Rambling Thoughts of a Frequent Wonderer

   Every story must come to an end eventually, some end sooner than others. Some have happier endings than others, but in the end, they all end. Although we write the ending in the stories we tell, the control over how our very own story ends is often not in our control. I will in fact have a tiny bit of control over the very end of my story, I suppose I will be the one who hits the final period that ends my story.  All the messy stuff leading up to it, well I just played the cards dealt to me to the best of my ability, with the loving support of my precious Robin. 

     My story has come to an end, it’s time to put down the pen and close the journal, or more accurately in my case, close the laptop.  Just a few days ago I received a notification that my blog had started nine years ago.  I’m not sure what I expected when I started it, but I am so glad that my daughter Elizabeth had inspired me by starting her own, it’s been good nine years.

     Yes there are still stories wandering around the recesses of my mind but it appears I will be taking them with me. Yes there are partial stories sitting on my laptop, stories that somehow never found the traction to take hold, stories I would visit from time to time, but that will now forever remain in limbo. 

     I have no false illusion of having been a master storyteller, I was just an ordinary man, sharing ordinary stories about an ordinary life. I don’t anticipate they would be of interest to a great adventurer or great intellectual mind but to other ordinary folks I would hope they would give pause to ponder some points worthy of pondering. 

     For those who wandered this path with me, thank you for your company and your encouragement. A writer writes to be read. Would I have still written if no one was reading or listening?  Yes I believe I would have, a writer needs to write, needs to free those thoughts or stories trapped inside their heads but having someone appreciate the way you have strung together your words, it has been a wonderful gift to me.  I am so very grateful for the kind words sent my way from the folks who read my stories, thank you, your words meant a lot to me, they were the best payment I could have hoped for. 

     To my fellow storytellers, please keep putting that pen to paper, or those fingers to your keyboard. Our world needs more storytellers, they make such a valuable contribution to our society.  In a world that seems to favour speed, mass production of a cookie cutter world, dare to be original, dare to be mindful and slow. Dare to give people something to distract them from what is becoming a more unpleasant world all the time. Words matter, always have, always will. You don’t have to yell them, you just have to get them said. 

     So I’ve been thinking of Everyday Heroes a bit lately.  Not the heroes who are awarded medals, or get public recognition for whatever they did, or my least favourite of all, the Social Media Hero more interested in posting their good deeds to satisfy their own demented need for attention.  I’m talking about the heroes among us, the everyday people that we might not give a second glance to in passing.  People we might see everyday but have no idea about their lives as unrecognized heroes.  Think about that for a moment, can you think of anyone who might be like that in your life?  While you are pondering that, let me tell you that I have many heroes in my life, I would like to tell you about a few of them.  

     I have always been rather introverted, in fact I often refer to myself as an outgoing introvert, which I suppose sounds strange but in my case is accurate.  I had always wanted to work at my skills as a wordsmith, but on my own I was floundering.  One day I saw that the Powassan Library had a Writing Group and so I thought I would stretch my comfort zone and attend their next meeting.  Although I found it intimidating and stressful, I recognized that I needed this push to get me to write.  So every other Saturday at 10:00 I showed up, in time I got comfortable and tried my best to assemble my random thoughts into some kind of order that might be tolerable to read and just maybe give people a few things to ponder.  We are an eclectic group of people who support, encourage and help each other do something we all love.  Although we would all probably write without the group, for myself it is belonging to this group that pushes me to write, that helped me revive a blog that had long ago grown stagnant.  Even after I was forced to move away they still let me attend via Zoom.  This group was started by Faye, she is the glue that holds us together.  Now I know she would brush it off suggesting it’s no big deal, but it is a big deal to me.  If she had not started this group I would have missed out on an incredible gift, a gift that has given me purpose and so much joy as my world collapsed around me.  Faye is one of my Everyday Heroes.

     When Robin and I made our first visit to Sunnybrook Hospital in Toronto, it was a pretty overwhelming day.  First they did a bunch of tests to confirm the diagnosis before sending us to the far end of the hospital where the ALS Clinic is located.  We sat there in the hallway looking at the club I have just joined, the one no one wants to join.  Looking around at the others waiting, knowing this is a preview of what is ahead for us, these broken people and their exhausted caretakers, and my head was just spinning.  We eventually are placed in a room where a stream of doctors, specialists and research people come and go, the day was all such a blur.  On that first day, and every visit we made to Sunnybrook there was this one person who stood out, far above the rest.  Brianna couldn’t make me better, no one could, but Brianna could help make life more bearable, and she repeatedly did.  She is my Occupational Therapist.   She was the one who in the coming months would repeatedly help me get the equipment I needed to survive and adapt to the steady decline.  It’s not just that she is so incredible at what she does, or that she is so efficient at managing so many different things at the same time, it was her compassion and empathy.  Of all the people at that ALS Clinic, she was the one that calmed our frayed nerves, she was the one who we knew cared, was truly on our side, the one we could laugh and joke with despite the dire situation.  I haven’t seen her for months, and I won’t ever see her again, but I hope she knows that she made a difference, that she had an impact on my life, and that she is one of my everyday heroes.

     Robin and I were doing our best to navigate a complicated system involving our ALS Clinic, numerous different doctors and specialists, drug companies, Insurance companies, medical equipment supply companies, Community Care with all their services, ALS Society, and numerous other organizations.  It was hard to keep track and just generally overwhelming.  Then one day we met my Killer Blonde, she was one of the two Assessors I needed to be approved by for MAID (Medical Assistance In Dying). Although she certainly didn’t have to, she agreed to take me on as a patient in her Palliative Care Practice.  She is a kind gentle soul who immediately put us at ease, despite the nature of our first meeting.  She visits with us every two weeks for an hour, actually listens to our challenges and helps us to overcome whatever we are struggling with.  She doesn’t claim to know everything but if she doesn’t know, she does find out the answer and gets back to us.  She has laughed with us, and she has cried with us. We know without a doubt that she genuinely cares and you can’t imagine the amount of comfort that brings to us as we struggle through each day.  I’m not sure how she does the work she does, caring as much as she does while caring for the dying.  There are no happy outcomes in her work,  but she can help people to a kinder, gentler death, and that is a pretty noble profession.  Dr. Celine is one of my Everyday Heroes.

     When you are diagnosed with ALS you are given exclusive membership in this elite club, a club no one wants to join, but once in, you find yourself surrounded by others in similar circumstances who understand like others not afflicted with this disease can not.  You will see people who fight this disease by advocating for the rest of us, by fundraising millions of dollars hoping to find a cure, or maybe by just offering that helping hand to others.  Some of my ALS friends have helped, guided, supported, listened, inspired and just made this intolerable journey a little more tolerable.  My fellow ALS People, you are my Everyday Heroes, thank you for helping me make it through the dark days.

     Families that include someone with ALS, well… they know things other families don’t know.  Things they can only learn through walking through the hell that ALS brings when it moves in with you.  They watch as their PALS (Person with ALS) dies bit by bit.  They watch their dreams disappear, sometimes they watch their career suddenly end as they stay home to care for their loved one.  Their once carefree life full of possibilities is now just full of medical equipment, medication, expensive bills and lost hope.  It’s hard watching the person you love die.  The caretakers are so completely exhausted struggling to go on, longing for peace and rest but knowing that only comes after their loved one dies, and that’s a high price for peace and rest.  The family members who care for their loved ones, they are my Everyday Heroes.

     I want you to think about this seriously for a few minutes.  What would it be like if you lost your voice and couldn’t speak anymore?  It is something that we all take for granted almost from the time we are born.  A young baby will coo, gurgle, blow bubbles experimenting with sounds and quickly realize that people around them pay attention to them when they do this.  There is absolutely no doubt in any parent’s mind that a baby is very capable of communicating their displeasure from the moment of their birth. In time the baby learns words which slowly form the foundation of their language skills that under normal circumstances last until they die.

     Maybe for the rest of today I would like you to think about what it would be like if you couldn’t speak.  Every person you want to talk to, you can’t.  Phone or video calls? Nope, you can’t make or receive them.  You could use sign language or play charades or become a Mime, except your arms and hands don’t work very well. 

     ALS is in the final stages of stealing my voice from me.  Whatever is supposed to be working, whether it be my vocal chords or the way my tongue helps to make sounds, they simply aren’t working anymore.  When I do try to speak, I speak much slower, I focus on enunciating my words, what voice I have left is now much softer.  So even if you can hear the sound coming out of my mouth there is a good chance you may not understand it.  It sounds silly but I can now become exhausted just from talking.  I mumble and slur what used to be words but now are quickly becoming indistinguishable sounds.  I know what I want to say, the words are very clear in my head but by the time they leave my mouth its like they have gone through a blender and no longer make sense.   I would like to think I was once a good conversationalist, but now I’m just a listener, hopefully a good one.  I am no longer able to ask the probing questions that showed people I was really interested and helped bring their story out. 

     If I’m being honest, I knew that this day was coming.  I knew that with ALS when the person starts slurring their words, they normally lose their ability to speak four to six months later.  I am now coming up on that six month point.  Even though I knew this day was coming, I find it very difficult to believe and accept that I will not be able to speak anymore.  I find it hard to believe I sound like I presently do.  Yes, yes I know, finally my friends and family will be able to get a word in while I am sulking in the corner.

     So the other day Robin and I were out walking Kiwi, she went into store and Kiwi and I rolled down the street to a warm sunny spot to wait for her.  A young man approached asking if he could pet Kiwi.  I said that he could and then we began chatting.  He heard the garbled words coming out of my mouth and I could read his face as he tried to determine if the garbled words might also be indicating a mental disability.  I could see how difficult it was for him to understand me, and in the end I regretted having gotten into the conversation with him.  Chatting one on one with people has always been something I enjoyed, just one more thing ALS has now taken away from me.  

     Robin was out the other day when my phone rang, I normally don’t answer my phone these days preferring Robin take the call, but as it was Sunnybrook Hospital calling I thought I had best not miss the call.  They were calling to advise they were sending a form that needed to be signed, hearing me mumbling they then added my Power Of Attorney could sign it for me.  Numerous other calls like this have come through since I’ve been going to the hospital, this time with my mumbling they added the part about a POA being able to sign for me.

     Sadly, my communication methods are starting to resemble that of an obnoxious teenager who can’t be bothered to actually converse with his parents.  I now point at things, nod in the direction of things, or maybe just look at things hoping that Robin will understand what I want.  When someone is asking me if something is all right I now resort to the ever reliable thumbs up.  

     Now people in my situation have ways to communicate thanks to advancements in technology.  I was told early on to ‘Voice Bank’… save my voice so when it came time that my computer would sound like me speaking.  Sadly I just never got that done, by the time I started trying to do that it was already too late.  There is also something called AAC which is Augmentative and Alternative Communication which includes boards with buttons to push which then say common phrases, or even Eye Gaze Technology, where your eye movement is able to communicate with your computer which can then speak or write for you.  Presently my Text to Speech App on my phone has me speaking with an Australian accent.  I’m trying to distract the listener from this broken old man in a wheelchair and make them think of me more along the lines of a handsome Aussie on a beach with a surfboard under his arm.

     Robin and I have always gotten along very well.  We used this rather unconventional approach to our relationship, we actually talked and listened to each other.  We are each others best friends, and although we can certainly talk about the big things going on in the world, we are both much more interested in what is going on in our own little world.  When we lived on the farm there were always things going on, she would tell me about her gardens, I would tell her about the things I saw on my hikes, we would slip into those easy conversations much like you might slip into a warm winter sweater, they just felt good.  Those nice easy conversations that I loved are now slipping away from us.  Having to continually repeat myself, and still not being understood makes me want to give up attempting to converse.

     I am totally dependent on Robin for my survival.  It is extremely important to me to make sure that I am able to tell her how much I love her, not only for who she is, but also for all she is doing for me.  It is also so important to me that I can make her aware of how very grateful I am for everything she does for me.  Yes you are right, she does in fact know how much I love her and how grateful I am, but it is still important for me to be able to say the words, just as it is important for her to hear those words….but I can’t say them, and she can’t hear what I can’t say…..or can she?

     Through most of my later life when I was struggling with something I would “sit with it”.  Not everything requires immediate action or response, sometime by just sitting with something a solution presents itself, or I am able to come up with a well thought out plan to deal with it.  So I was sitting with my inability express my love and gratitude to Robin when an old Allison Kraus song came to mind.  It was an old favourite of mine, and one I had played on my guitar many times…..and it gave me comfort. 

When You Say Nothing At All

It’s amazing how you can speak right to my heart

Without saying a word, you can light up the dark

Try as I may, I can never explain

What I hear when you don’t say a thing

You say it best, when you say nothing at all.

    I’ve been thinking a lot lately about goodbyes.  Good goodbyes, bad goodbyes, unspoken goodbyes and final goodbyes.  I am sure there are other kinds of goodbyes but right now those are the one that come to my mind.

     People leave their home every morning to go to work and expect to return at the end of the workday, and almost all of them do.  However there are some who don’t.  A car accident, a workplace accident or some sort of health issue could all stand in the way of that safe return home.  Maybe they said goodbye to their loved ones, or maybe they left with no words, or even worse, angry words.  It is sad when people don’t get the chance to say goodbye, when suddenly someone is ripped out of their life never to be seen again.  The chance for a final goodbye stolen from them.  I know this has happened to me, and I suspect it has happened to you as well.  When someone is part of your life and then one day they are suddenly stolen away never to be seen again.  They are gone, you had unfinished business with them  that will never be finished.

     Some folks outlive their friends, end up in a nursing home alone, lost amid all those other old folks. Children or grandchildren busy with their own lives may visit occasionally but most of their days are filled with emptiness.  Most of their friends long gone now, and the one or two who remain have been abandoned by their minds and live in a world where strangers act like they are family and friends.  Some people dream of a long life but these people are tired of being alone with all these other old people. They don’t fit in anymore, they have seen and lived through things that the others haven’t.  They miss having a best friend, or really just any good friend. They sit there with their eyes closed, staff think they are sleeping but they are rummaging through the attics of their minds, searching for happy memories, or searching for their way back to a happy place. So they sit and wait until their time comes, awash in loneliness and despair.  It is like they are sitting on a bench at a bus stop. Waiting for that long overdue bus to come and take them where they need to go, wherever that may be.  They have come to the time to say goodbye, but they don’t have anyone to say goodbye to.  

     I know that these days with access to modern travel that as long as you have the money you can go back and visit family no matter where they are.  There was a time when family members would move across the world, where the young married couple would say goodbye to their parents before they got on a boat and crossed the ocean, never to see family again.  Chasing their dream of a better life in a far away place.  Imagine how the parents felt  saying goodbye to their child knowing that it was likely they would ever see them again.  What words would you say to your child, or your parents in those circumstances?

     Goodbyes are never easy, but I think some of the hardest goodbyes are the last goodbyes.  I remember caring for my Mom as she lay dying from cancer.  We knew the end was getting near and I had been sleeping in a LazyBoy chair I had dragged into her makeshift bedroom.  I needed to take a night off to study for an exam, I remember it was a Thursday night.  Some believe that a loved one often waits until they are alone to die, maybe that is what my Mom did dying in the company of a hired nurse rather than with her son sleeping at her bedside.   Although I don’t think we ever actually said the word goodbye, I think we lived our goodbye by sharing our love, stories and smiles over the last days and weeks of her life.  I suppose that was an unspoken goodbye.

     I remember getting up early one morning and driving four hours south to see my close friend Dave who was dying in a Cancer Hospital.  As soon as I saw him I knew it was the last time I would see him, and it broke my heart to seeing this proud man struggling like he was.  We said our Goodbyes, both knowing that this would be our final Goodbye, we hugged, said we loved each other and then I walked out of the room.  I stopped and stood in the doorway, my hand over my heart, tears streaming down my face and then I tipped my hat and walked out of his life.  Dave died a few weeks later, all this time later I can still picture my friend laying there in that hospital bed, both of us knowing that his story was nearing its end, and the last chapter wasn’t a pretty one.  

     So the goodbye I have been pondering a lot lately is the Final Goodbye, in this case my own.  I know it is coming, and to be quite honest I really didn’t expect to still be here now.  The fact that I am seeing spring flowers is a rather unexpected gift.  My best before date is long past. If I was a car I would have long ago been taken to the scrap yard.  I’m not sure how much longer that Robin and I can keep this wreck of a human body going.  I’m not sure how much longer I want to keep fighting.  I’m tired, Robin is tired and I’m not sure I can keep asking her to do everything that she has to do to keep me going.  Sooner or later the music has to stop, the dance has to end, the lights come on and the couple has to uncouple.  

     Friends have come from near and far to see Robin and I, and say their goodbyes.  Their love, affection and support is enough to make me think maybe I didn’t mess up this thing we call life too badly.  For the friends who came from a distance we just generally accept that this will be the last time we will see each other in person.  As the time for them to leave is approaching I feel sadness and apprehension at the final goodbye.  When you know it is your last in person goodbye you want to get it right, but what is right?  I know there will be tears on my side, my tough guy persona no longer exists.  I want to say the right words, speaking them clearly without mumbling, and say it all with shedding a tear, but it appears I am not capable of that.  Instead I say goodbye and hope that the person I am saying goodbye to knows how much I love them, despite my mumbling, despite the words not being said and despite the abundance of tears flowing down the sides of my face.

     For me personally there can be no harder goodbyes than saying goodbye to my daughter Elizabeth and wife Robin.  I am not convinced that the greatest authors or songwriters would be able to weave together a tapestry of words or music that could adequately do the job, because I just don’t think the words exist.  Even without the words I know that there is no doubt in Robin or Elizabeth’s mind about how much I love them.  

    And for those who couldn’t make it here, it’s okay….I know…. and I hope you know as well.  

“How lucky I am to

have something

that makes saying

goodbye so hard.”

     The last few nights I have been waking up in the early morning hours, usually between three and four.  I raise my hospital bed up to the seated position and take one of my ALS medications, hoping I am able to swallow it without choking.  I need to take two during a day, and they can’t be near eating times, so the middle of the night and middle of the afternoon is normally how I do it.   My hospital bed moves much quieter since I had Ravi my PSW lubricate the moving parts.  Prior to that all the creaking and groaning made it sound like a big old door in a haunted mansion every time I changed positions. 

     Normally I am able to get back to sleep but as of late sleep has been evading me in the early morning hours.  I lay there flat on my back because that is the only sleeping position available to me these days.  I watch all the city light seeping in through our windows and lighting up the bedroom walls to the point you would think it was dawn.  We are twelve floors up but still the city light reaches us, there is no escaping it.  As I lay there I see the occasional flashing lights reflect off the walls from the nearby fire station as the Paramedics respond to their next emergency.  Apparently they aren’t sleeping either.  I miss our home up north where the light seeping in our window was a softer, kinder light.  It told me how full the moon was or if it was cloudy, it was a soothing light.  City lights just seem cold and harsh.

     I close my eyes again, trying to block out the light but then I become more aware of the hum of the city.  They say the city never sleeps and I think they are right, maybe the city can’t get used to its own noise either. I can hear the passing traffic and a humming sound.  Not sure if that humming sound is from the city or from living inside a Condo, there is never silence here.  I do so miss the deafening silence that living on our farm brought us, I know this may not make sense to you, but the silence up north was quite loud, all enveloping.  The silence up north feels like being wrapped in a big warm blanket and sitting in front of a fireplace, feeling the warmth, as you watch the flickering flames.

     As I lay there I hear Robin stir from her sleep, I hear her slide open the drawer on her night table and a few seconds later I hear the familiar opening of the flap at the end of the medication box, then the crinkling of the foil and plastic medication wrapping as she retrieves her Migraine medication from it’s packaging.    This is not a good sign, it means her always challenging day is probably going to be even more challenging.  There is no phoning in sick and taking a day off when your husband is disabled, you just have to push through and get things done.  My heart aches for her, I miss the days when I looked after her when she wasn’t well.  Pulling down the blinds, covering her with blankets, bringing her ice packs wrapped in towels, warm soothing teas, and sometimes just holding her trying to offer her gentle comfort in the midst of the Migraine storm that was battering her.  I am no longer able to look after her like that, it seems so unfair to me that all the looking after is now a one way street, she has to look after me, and after herself.  I am glad that she has drifted back to sleep, perhaps she managed to get the meds in early enough to divert the storm.

     I’ve been awake for an hour now so I sit back up and decide to read, perhaps that will tire me out and let me find my way back to sleep.  As I begin reading it occurs to me that although I didn’t do this intentionally, this is the third book in a row about someone going on a journey or pilgrimage.  There is something ironic about reading about these great journeys when here I am limited to where my wheelchair can take me.  On the other hand this ALS journey is certainly a different kind of adventure, just not one I would recommend.  After a few chapters I settle back down and attempt to sleep again.

     I lay here, being cruelly tortured by this body of mine.  I can feel an itch on the top of my head and another one far down my right leg.  Both screaming at me to scratch them, but neither in a place I can reach anymore, it is my own body mocking me, cruelly laughing at me while I lay here helpless.  Okay, just don’t think about it, think about something else, but that doesn’t work, the harder I try not to think about them the more they push themselves to the centre of my thoughts.  In addition to that I have my almost constant headache, not a head splitting one but rather a dull constant ache.  I know that the headache is probably due to dehydration, it is hard for me to take in enough fluid when I can only take it in small sips or risk choking.

     I have suffered from sleep apnea for a long time, prior to getting my CPAP Machine I would have nightmares where I was drowning, gasping for air.  I would wake up trying to catch my breath and having to calm my racing heart.  Something about the positive air flow causes my airway to stay open and helps me get a better sleep.  I had taken my CPAP off to read and as I am no longer able to put it on myself, I tried sleeping without it. I remained in a mostly seated position as this helps me to keep breathing, but still every few minutes I stop breathing and wake up again.  It is apparent that a return to sleep is not going to happen this morning.  It is also quite apparent that ALS has made my sleep apnea much, much worse.

     I think about this not breathing thing.  Last time we spoke to my Doctor, The Killer Blonde, I had explained having trouble with something ALS patients call Acid Tears where one or both of your eyes suddenly start to burn and tear up.  She made some inquiries about it and learned that it is likely caused by a buildup of CO2 in my body.  Apparently my body is no longer able to expel all the CO2 and this cause some kind of Acidic buildup which seeps out of my eyes causing the burning sensation.  I may be due for a new machine called a BiPap which pushes air in and then sucks it back out, hopefully reducing the CO2 buildup.  I have seen other ALS patients using them, just another stark reminder of the onward march of this disease.  

     After she mentioned the build up of CO2 I am suddenly aware that my breaths have become much more shallow.  I had been a runner for most of my life so my breathing and lung capacity had always been above average but these are no longer Runner’s lungs, they are now ALS lungs, now below average and continuing on their downward spiral.  I believe my breaths are a third or half of what they once were.  This must have been gradually getting worse for a long time and I just didn’t notice it.  Just more breakdown between the brain and the muscles that keep a body functioning.

     I’m still awake when I hear Robin get up and go to the washroom, I recline my bed until it is flat and when she returns she climbs into bed with me.  The hospital bed is small and narrow, definitely not made for two but we snuggle into each other, my right arm wrapped around her, her right leg draped over mine.  Although normally this is the best part of the day, today Robin is softly crying into my shoulder, overwhelmed at the thought of having to get through another challenging day when she feels so poorly.  This is a reminder that heroes don’t all wear capes, they too struggle and get overwhelmed.  I admire Robin so very much for how bravely she faces our challenges.  Some mornings as we lay in each others arms, our tears intermingle, not because one of us don’t feel well but rather because of what we know is coming.  I will share something with you, something that surprised me, and may surprise you as well.  It is not this dying thing that is the heart wrenching devastating thing that we are facing, the dying thing will probably be quite easy.  What is rocking our foundation is the knowledge that soon our paths will part for the final time, Robin will continue on her path alone, and I will go through a door to the unknown.  

     As Robin and I lay together I can feel the fasciculations -the muscle twitching I can’t control beginning.  They start and stop twenty four hours a day now.  I can feel my right thigh twitching, Robin’s leg is draped over it so I know she must feel it too.  Oddly, I can feel the right side of my stomach twitching as well, not a place where I think of having a muscle but obviously there must be something there.  I used to spot the drug addicts walking down the street by the way they twitched, seeking out their next fix, now I am just like them twitching in my bed or wheelchair.  Their twitching stops after they get their fix, my twitching is more unpredictable, coming and going however it pleases.  

     So recently my wife and I were walking our dog Kiwi through an area cemetery.  It is a nice part of this particular walk as it is quiet, peaceful and away from the traffic.  It also allows us to be beside each other so we can talk more easily.  City sidewalks are not conducive to my wife, my wheelchair and our dog Kiwi walking side by side.  This means any conversation must be had over the shoulder competing with the noise of passing traffic.  To be honest, that was hard at the best of times, and these aren’t the best of times.  Combine my mumbling with my dear wife’s denial of any hearing loss, our conversations could involve a lot of smiling and nodding with minimal comprehension.  The comment about my wife’s hearing loss, can we just keep that between us?  She’s a little sensitive about it.

     We were walking through the cemetery, chatting about different things enjoying the sunshine and fresh air when  Robin then turned to me and asked; “Where should I go to talk to you after?”  Meaning after I’m dead, it is one of the many things I love about Robin, we can talk about the hard things and it’s okay.  Deny it all we want, but we both know what’s coming so why not talk about it while we can.  If I do this last part of my life right, hopefully I will leave no unanswered questions and perhaps that will bring peace to those I am leaving behind.

     So where does one go to speak to those who have died?  Do we all do it?  This got me thinking about those times I spoke to those who had died.  I will clarify that these conversations can be held aloud, or as most of mine are, held totally in my head.  Although I may not be getting actual responses, sometimes in my heart I feel a connection to the person I am speaking with, I suspect because they still reside there in my heart.

     My Mom has been gone some 21 years and I speak to her from time to time.  Mostly I have been telling her about life  events and telling her that I am sorry that she is missing them.  I say that I wish she could have seen her granddaughter Elizabeth grow up into the amazing person she is.  I wish that she could have met my sweet Robin, I just know that they would have gotten along so well as they have so many things in common.  I tell her that the brave way she faced her cancer and left this earth inspires me daily as I walk a similar path.  My Dad has been gone ten years next month, I talk to him telling him that at the end of his life when I was making his healthcare decisions that I hope I got it right because it still haunts me.  I apologize to him that I wasn’t more patient with him and for feeling the need to correct his many tales.  My Dad was never one to let facts get in the way of a good story, I should have allowed him that.  I have lost some well loved friends along the way, I speak to them telling them how much I loved them and that I hope I was a good friend to them.  Sometimes I talk to them about how screwed up this world is getting, and I wonder what they would say about it.  I don’t hear their response but I take comfort as it feels like they are sitting there beside me.

     In Tom Hanks’ recent movie, A Man Called Otto, it shows Otto going to the cemetery with his lawn chair and thermos of coffee.  He sits there by his wife’s gravestone talking to Sonya like she is sitting there across the kitchen table, and not six feet under him.  It is poignantly heartwarming and devastatingly sad at the same time. In the movie An Unfinished Life, Robert Redford’s character Einar walks up the hill behind his house to his son’s grave almost daily where he sits on a bench and talks to his son updating him on mundane daily life.  Both characters seem to take comfort in the practice.  It makes me ponder what is more important, to speak or to be heard?

    Now I should confess that I have a love/hate relationship with cemeteries.  One part of me finds them to be of amazing historical significance.  Names of those long past, dates of their births and deaths, connecting them to a spouse or child.  Sometimes some snippet of information giving you a minute detail about a life lived.  There are the tombstones with lambs on them for the death of a loved child.  There are sections with row upon row of crosses for the Veterans who gave their lives In a foreign land at the whim of the politicians at the time.  Mostly cemeteries are peaceful, well maintained green space, with little to no traffic.  They have places to sit, sometimes under a tree, or perhaps just on a patch of grass.  Now I am a story teller who is always in search of a new story and it occurs to me that these places contain thousands of stories, most of them destined to remain untold forever, and I think that is sad.  

     One of my old running routes used to include the road that circled through a cemetery near my workplace, it added the extra distance to stretch my run on my lunch break to five kilometres.  It was a newer cemetery, not like the massive old ones that have thousands of graves, many over one hundred years old.  I would only occasionally see someone visiting a grave there, sometimes it was a fresh grave, more often than not it was an older person who I suspect was visiting their lost partner.  

     I don’t like the idea of being buried after I die.  The idea of burying my body in the ground to slowly rot and decay has no appeal to me. I have already arranged and paid for my cremation.  The whole dust to dust thing just makes sense to me. 

     So where should Robin go to talk with me after?  

     Well the best place would be to walk the trails I cut on our property up in Nipissing, but that is problematic because someone else owns that property now and I doubt he has maintained the trails that I built up over the four years of living there.  I did also hike the trails behind our property that cut through a hunt camp and then led to Crown Land, so that could work, although that’s a pretty long hike.

     She could go to the Lowville Bistro where we had our first date and subsequent wedding exactly one hundred and fifty months later.  Next to our property up north I would think that would be the next most significant spot.

     When I lived in Hamilton Robin and I would go with my dog Buddy to the Arboretum at the Royal Botanical Gardens where we would often hike the trails.  I had a yearly membership there but avoided it during the summer.  We would visit there often in the fall, winter and spring when less people were about.  There are a few places to sit, or lookouts we used to visit that would be a good place to sit and chat with me.

     Realistically I would tell her that any place, inside or outside, where she could sit in the quiet, and perhaps sip on a hot cup of tea would be a good place to talk to me.  I would encourage her to talk to me about what’s going on in her life, just like we did when we laid together in bed, wrapped in each others arms on our lazy mornings.  Those times when life was as perfect as life could be.

     Will I send messages back from the other side, and if so what would those messages look like?  

     I don’t know but I suspect the postal service and wifi won’t be up to par over there.  Some believe messages from the other side look like butterflies who might land on you, rainbows, birds (usually red cardinals), flowers, or finding coins, particularly dimes for some reason.  

     I have, or should say had a friend named Margot who also travelled on the ALS Highway with me for a bit.  She chose to exit this life on her birthday last December, but since then her Facebook page is still being updated. Did I mention she was a bit of a character?  Maybe she got the upgraded WiFi package on the other side.  The day after her death her Facebook page advised she had arrived safely at the Pearly Gates and that it was cocktail hour.  She advised us that she would still be around, “Just keep your eyes open for blue herons and ghosts with red lipstick”.  The Grand River is close to where I live, rest assured that when I see a Blue Heron I will smile and give a nod to Margot who is now flying free.

     Robin will know what my sign to her from the other side is, there is only really one thing it could be.  It will be the full moon, what we have always referred to as “our moon” because it was watching over us as we drove to our homes after our first date.  It was the moon we would point out to each other over our near fourteen years together, the moon we would stare at while wrapped in each others arms looking out our bedroom window on the farm.  It is the moon I will want her to gaze at, smiling as she remembers all the days we shared our moon together.  Most importantly I will be reminding her that there is always light in the darkness, and that is what I need her to always remember.

“It is during our darkest moments that we must focus to see the light”

     Over the years I have spent some time in jails and prisons, as you might expect they are not nice places.  Once you get past the front lobby you see nothing but block walls painted in some dull uninspired colour, they are devoid of any decoration that might be weaponized.  Long empty hallways broken up by Modules, the places where the guards sit locked away behind thick glass.  The guards open the gate which slowly slides sideways. Once you are inside, that gate slides back closed and only when it is completely closed does the next gate begin to slowly open.  There is a very loud, cold, metallic clanking sound when the the gate completely shuts and the locking mechanism engages.  You may have heard that sound in movies or on TV, but I assure you the sound is much more profound in person.  That haunting sound tells you that you are now a prisoner and whether you are visiting or not, freedom is on the other side of those bars and you can’t get out unless someone lets you out.  No matter how many times I went in, that sound always sent a chill down my spine.

     My visits to the “inside” always involved some crime, usually something that happened before the person entered the prison.  Sometimes it involved a crime that happened inside those walls, a Prisoner on Prisoner crime, but sometimes I had to investigate a Guard on Prisoner Crime.  Those were the days when the people opening and closing those gates, the very people who had total control over me regaining my freedom, might be the very people I was investigating.

     All the times I went “inside” I never got used to the feeling of being trapped, vulnerable.  I knew that I could never work as a guard in a prison, I don’t think there is enough oxygen on the inside for me to breath and I truly feel that those walls would close in on me.  I am glad that there are those who are willing to work there, but I think they are just wired differently than I am.

     For myself, I have received my prison sentence.  With a traditional jail sentence, the prisoner goes to a penitentiary, then before they are free they are paroled to a half way house and slowly integrated back into society, gaining more and more freedom as time goes on.  My journey goes in the opposite direction, I have less and less freedom as time goes on. I have been thinking about this prison sentence a lot more lately.  Although in a lot of ways it is similar to a traditional jail sentence, in some ways it is much more cruel.  There is no hope in my case, there is no appeal that overturns an ALS sentence.

     My voice has now reached a point where if given the chance, I would probably remain silent.  There are a few close friends I still feel comfortable to “mumble” with, but otherwise I am adopting my new persona as the weak silent type.   I am just getting too hard to understand and speaking takes a lot of effort.  Gone are the days of the confident, strong voice that once spoke so clearly.  Now I’m just some guy who mumbles and is hard to understand.  I really hate losing my ability to speak, I’m losing the chance for those really quiet heartfelt chats about things that matter.  It’s just not the same when I am mumbling, hard to understand and I have to keep repeating myself.  My voice is being silenced, and for a storyteller, a ponderer and a guy who enjoys a good conversation, this cuts me to my core.  

     Now if you’re reading this then obviously you can see that my one finger typing does still allow me to share my thoughts, and hopefully when you finish reading my latest ponderance you feel it was worthy of your time.  This is my one creative outlet that hasn’t been taken from me….yet.  I know that day is coming soon, my ability to reach out my arm is slipping away.  I can no longer fully extend my arm, but with my elbow tucked against my side I am still able to slowly work my keyboard.  One day in the not so distant future my arms will hang limply by my side.  My voice silenced, my typing silenced, just a head full of thoughts trapped, unable to escape and be expressed.  If I let things go that far I will spend the remainder of my life looking through eyes that are my windows to the outside world.  I will be able to see and hear everything in front of me, but when people look at me it will be like watching a frozen computer screen, no sound, no movement other than a little eye movement, and possibly some head movement.

    I will not need to be confined in some over priced modern super prison, you can just drop me down anywhere, no further restraints required.  I will lay there on my back, unable to roll over or even sit up.  I assure you that you can always find me just where you left me.  There is no great escape in my future.

     When I enter my prison I will be headed for Death Row.  Unlike others on Death Row, there will be no appeals, no phone call from the governor at the last minute, I won’t stay on my death row for long, there is no purpose to a long stay there.  I don’t even get my choice of a great last meal, my ability to eat is more and more compromised all the time.  My last meal isn’t steak or some exotic dish.  In all likelihood my last meal will be some form of smoothy to avoid choking, probably not a last meal request they would get on the other Death Row.

     Questions do remain, who do you allow to visit you on Death Row, do you share with your friends the date of your execution, and do you have friends attend?  Or do you just sneak away, out the back door and avoid the painful last goodbyes that are unlike any other goodbyes?  Some folks have a big party, singing, dancing and laughing their way out of this life, but then I’ve never been one for big parties.  A friend suggested a living funeral, where the soon to be dead get to hear if anyone has anything nice to about them.  I have had the great privilege to have those people nearest and dearest to me visit.  We have laughed, cried and shared great stories, and said the things that we each needed to say.  Yes, there is always something more that could be said, but if I have learned one thing from my writing, sometimes less is more.  I used to write something inside the front page of the notebooks I issued to my young Detectives,  It said “Talk Less, Say More”, generally a good Motto I always thought.  If there is such thing as a good goodbye, then I do believe I have achieved that.  There is a line in the Tuesday’s With Morrie movie where the wise Morrie explains to his young distraught friend Mitch, “Death ends a life, not a relationship”.

     It is a hard thing to wrap your head around, being in control of the time of your exit, some would say it is a blessing, some would argue and call it a curse.  For me, in my circumstances, it is a blessing.  So when my Killer Blonde comes to open that final exit door for me in her kind, gentle, reassuring way, hopefully I will go through it feeling at peace with how this final chapter of my life has ended.  My story will be over, the book will now be closed.  Although my story may not be a best seller, hopefully it will have been a good story, one worth the time it took to live it.  Maybe from time to time those left behind might think back to my time with them and share a funny story or perhaps some wisdom that was shared in my writing, or that we talked about while out on a dog walk.  I hope that shortly after I am gone that any memory of me will bring a smile rather than a tear.  I hope that when I am thought of, I will be thought of as a  simple, good man.  A friend, a father and a husband who just maybe touched a few lives and left this world a tiny bit better than he found it.

To laugh often and much;

To win the respect of intelligent people 

and the affection of children…

To leave the world a better place…

To know even one life has breathed easier

 because you have lived.

This is to have succeeded.

     I think we all know what a detour is.  You are going somewhere and the way you were going is blocked for some reason. You have to divert and go a different longer way.  Detours aren’t always a surprise, sometimes we plan a detour into a trip, maybe we detour to see some sight or perhaps to visit with a long lost family member.  So to summarize, a Detour can be planned or unplanned, but normally involves going in a less than straight direction.

     So what I have described above normally applies to some kind of trip you are going on, but what I have been pondering lately is Life Detours.  That is when your life is going in a certain direction but then goes off in another direction, often because of someone who you have met on your life path.  These people can often act like a bumper in a pinball machine sending you off in an unexpected direction, perhaps playing a small role but having a big impact.

     Now let me tell you how my thoughts got hitched to this train of thought.  A young man that I used to work with came to visit me recently and shared with me something that he said had a big impact on his life.  Apparently one day many years ago, before we really knew each other I stopped him in the hallway at work one day.  I hadn’t exchanged more than a few words with him prior to that day, but I had read enough of his reports to know that he was a good, hard working officer who I felt would be a good fit for our detective office.  I stopped him that day and suggested he apply for an upcoming opening we had in the Detective office.  He told me he hadn’t thought about applying before I suggested it, but he went home that night, spoke to his wife and he applied the following day.  From this short conversation, that I only vaguely remember, he was brought into the detective office, which led him to being promoted and just recently leaving the Police for an prestigious position in the Justice system.  He credits that conversation I had with him as having a significant impact on the direction of his life.  I had totally forgotten that conversation until he mentioned it.

     Another example I can offer is a woman I worked with years ago stopped me one day to thank me for being there for her many years earlier.  Apparently we were working together on the same squad and she was having a really challenging time.  She tells me that after a tough nightshift I had taken her out for breakfast, listened to her, offered her some guidance and sent her home feeling a lot better about her situation.  It was more than ten years after that breakfast that she was thanking me.  I had absolutely no recollection of that breakfast, but it had a significant impact on her as she made some changes after we spoke that sent her life in a different direction.  

      So this got me thinking about some of the detours I took in my own life, and the people that were largely responsible for those detours. 

     My first real significant job of note was when I was hired on Security at General Motors in St. Catharines.  It was supposed to be a summer job but I stayed for seven years, and during my time there I my life took two significant detours.  

     One of the people I worked with there was Gerry, a guy about ten years my senior, who became a very dear friend to me, and still is now, some forty-four years later.  Gerry was significant in my life because, well I would say he is largely responsible for the person I am today.  When I met Gerry I would describe myself as a twenty year old young man who was like many people that age.  I thought I knew everything, when in fact I knew very little, and if I met myself at that age I don’t think I would like me.  Gerry was just this really likeable young guy, married to a beautiful wife and with two handsome young sons.  He was kind, thoughtful and gave me the impression of being an exceptionally good person.  He didn’t directly teach me how to be a better person or a better father, but I learned so very much by watching him, listening to him and then emulating what I saw and heard.  Sometimes when I was struggling with a decision I would think to myself, what would Gerry do, and I would then do that.  I guess you could say he was a life mentor for me.

     Also working with me at GM was a guy named Wayne who left the Provincial Police and eventually ended up with GM Security.  Wayne knew of my desire to pursue a career in Policing, and one day as I was approaching ten years of failed attempts to get hired by a Police Force I shared with him that I was thinking that maybe I should give up this dream as it did not appear it was ever going to happen.  He looked at me and said why don’t you apply to the Hamilton Police?  I explained that it was too far away, but he pointed out that lots of guys drove down the highway to the steel plants everyday.  I thought about it, then did as he had suggested and a few months later Hamilton Police hired me.  I haven’t spoken to Wayne in over three decades, and I doubt he would even remember that conversation, but thanks to him my life took a huge detour. 

     My life took another detour one cold, wintery January day when my daughter made her entrance into this world.  Suddenly I was a Dad, and so began the desire to be the best Dad I could be. I am still working at it some 42 years later.  I watched how Gerry parented and copied him, I watched how some others parented and did the opposite, but mostly I just tried my best not to screw up the most important role I would ever have in my life.

     There are as many different styles of Policing as there are Police Officers.  It was important for me to be the best officer.  I had three Sergeants that made me a good officer, each causing me to detour from the way I had been doing things.  Peter who taught me that I had the best career in the world, and if I wasn’t having fun than I wasn’t doing it right.  Robert who was such a stickler for detail that we would often get our handwritten reports back covered in sticky notes with questions that needed to be answered.  Once I learned to write reports to his standards I never had a Sergeant send my reports back for further work.  John who taught me that true leaders create an atmosphere where those who work hard for you don’t do so out of fear or intimidation, but do so because they don’t want to disappoint you.

     There is an old saying, its better to be lonely and alone, than lonely with someone.  I was a broken man, living an unhappy life with little hope for my future.  This is when I met Traci who convinced me that my company was enjoyable, that I was interesting, that I was attractive and desirable.  Although Traci and I didn’t get our happily ever after, I credit her with opening the door that allowed me to find my way back to a happy and fulfilling life.

     Like many others I am a survivor of an ugly war in Family Court that stretched over ten years and cost an obscene amount of money.  I was trying to represent myself, drowning in a tank of sharks when Gina stepped in to throw me a life ring and pull me out of the shark tank.  She directed me to Michael, my third family court lawyer who was a kind, gentle and wise man who managed to win in court and give me back my life.  Gina and Michael, two people with minor roles in my life, but who both had a major impact.

     After two failed marriages I had begun to wonder if perhaps I wasn’t meant to be single for the rest of my life.  My friend Lynda convinced me to try out online dating and I reluctantly agreed.  I went on a string of dates and had some fun along the way but wasn’t really clicking with anyone.  Then one day I received a message from a pretty young woman, I was above her requested age range, and she was below mine, but there was something about her.  I wrote back and we began to message back and forth daily.  After a month we met, and she was every bit as special as her pictures and messages suggested.  I sometimes wonder what our lives would look like today if she hadn’t been looking outside her age range that day.  It was this detour which led me to my last, best and final wife.  The woman I was meant to be with.

     There was the Neurologist who was the first one to tell me that I had ALS and would likely be dead in 2 - 5 years.  This was an unplanned an unwelcome detour I found myself on.  If we go back to the Pinball metaphor, the steel ball has now hit the last bumper and is rolling down the centre of the game, out of reach of the flippers.  It is the last play, the game is soon to be over, there are no replays.

     Every life has detours, some good, some not so good.  

     What detours has your life taken?  

     Who in your life has had a minor role but a major impact?  

     Something interesting happens as you are approaching your own death, people suddenly think that you have gained wisdom.  They ask you questions and wait for something profound to come from your mouth or keyboard.  Has this act of dying suddenly made me wise? No, I don’t think it has, but what it has done is it has given me the gift of clarity.  Suddenly I am able to see through the haze of all the things that don't matter, something that was so hard to do through most of my life.  Suddenly I can see, and understand what is important, what really matters, which in some ways can give the impression that I am wise.  

     I have a counsellor named Gord who visits me every other week.  He is a quiet, gentle and wise man.  He is a counsellor connected with some of the nearby Hospices.  He has been asked to speak to an area Men’s Group, and he has been asked to share what wisdom the men in his Palliative Care Ministry would share with this group of men based on their current and life experiences.  What follows is my reply to Gord about his question to me.

     It can happen to you.  I think we all wander through life feeling we are somewhat invincible.  I was in good shape, loving my retirement, living my best life when suddenly the trap door under me opened and the world I knew was suddenly gone forever.  So next time you drive by that cancer hospital, see that disabled person struggling, visit that dying friend in the hospital, pause for a second and realize that that person could be you…..I hope it never is, but it could be.

     Stop putting everything off until tomorrow because sometimes tomorrow doesn’t come.  My wife and I had planned adventures but put them off as we had moved to our dream property and got busy there.  I feel badly that I didn’t give her some of those dream vacations because she deserved them, but I just thought we had more time.  Even after getting my terminal diagnosis we got busy taking care of things to prepare for what was coming, and I missed the chance to travel before my illness took the opportunity for travel away from me, from us.

     Life isn’t about collecting “things”, life is about loving, making memories, helping others, pursuing happiness and just maybe leaving the world a little better than you found it.  All the money in the world can’t save me, but somehow as I journeyed through life I managed to collect a menagerie of the best friends one could ever ask for.  Walking the road toward your impending demise can be a lonely and scary path on your own, but continually I find one of my friends there beside me, they don’t even have to say anything, the comfort comes from just finding them by my side.  So I hope that you have been a good friend, because those that have good friends tend to be good friends themselves.

     Time is very valuable but sadly we tend not to be aware of that until our Time is running out.  These days life seems to be lived at a super fast pace, which can be dangerous because all that Time we are hanging on for dear life, our life is passing us by.  Children grow up, friends move away or die, our health gets stolen away from us and we come to the end of our life without ever having lived.  Take it from someone who’s Time is running out, Time is more valuable than all those things you think you want or need.  When people are interviewed near the end of their life the thing they wish for more of isn’t money or things, it is more Time.  Once Time is gone you can’t get it back, so spend your Time wisely, very wisely.  

     I hope that you have a great spouse, partner, significant other, or whatever you might call them.  I am very lucky because I have the best wife of all time, I already knew she was great, but when my illness moved in with us she surpassed, and continues to surpass all my expectations.  I wouldn’t be here now if it wasn’t for her, she saves my life every day.  She manages to wring little bits of joy out of this small fraction of a life that remains, and she does it every single day for me.  Prior to diagnosis we were a very happy couple, but struggling through this illness has brought us to a level of love I never knew existed before.  I hope that if you ever find yourself confronted with a serious illness that you have a partner like mine.  A partner that loves you, shows you kindness and compassion, and is your rock to steady you when you stumble on your journey. I also hope that you recognize although you may have the terminal disease, both of you share it completely.  The very small life I live is also lived by my wife, she can’t travel, she can only leave our home for short periods because of my care needs, in her caring for me she has had to do things no one should have to do for their spouse.  She has no days off because she is caring for me 24/7, and somehow through all the exhaustion, unpleasant tasks and tears she continually shows so much love for me, despite how unlovable I may feel I am.  If you are visiting someone with a terminal illness don’t just check on them.  Take the time to check in on the caretaker, they are often forgotten about but carry such a heavy burden.

     Say the things that need to be said, because one day you, or the person you should have said those things to may be gone, and the things that needed to be said will then forever remain unsaid.  Tell people you love them and that you are grateful that they are in your life.  Don’t cling to grudges or old hurts, they are only stealing joy away from you.   How many of us have lost someone and regretted not telling them how we felt?  I know I certainly have lost dear close friends and family members before I said the things I should have said to them.

     I went out of my way to speak to numerous widows and widowers who had lost their partner to a terminal illness.  I asked each of them about the aftermath, the time after their partner had died, and asked them what went well and what do they wish they had done differently.  I have tried to learn from others who have travelled this road, I want to make things as easy as I can for my wife and daughter afterwards.  It is sort of the final gift that I can give.  So if you don’t have your affairs in order, terminal illness or not, get them in order,  Ensure your Will is up to date, that people know your wishes, and maybe even make your own funeral arrangements for yourself, it is a burden you can relieve your loved ones of during a time when they will be struggling.

     Do nice things for people, they don’t have to be huge things, sometimes the smallest of kindnesses can turn someone else’s day around.  Kindness costs you little if anything, but it pays huge dividends.  I can guarantee that kindness is the best investment you can make.  

     Be grateful for everything.  Gratitude is a core ingredient of happiness.  Even when something bad happens, don’t just focus on the bad thing, look around because there is good there too, it’s just harder to find.  My terminal illness has brought many amazing people into my life, brought countless acts of kindness to my wife and I, made me so appreciative of what I have, and made me feel so much love from my wife, daughter and friends.   I know this sounds a bit crazy, but this dying man is very lucky in so very many ways.

     As my ALS marches on stealing more and more from me, the lists of my “Lasts” continues to grow.  In the past few weeks I had my last Christmas and my last New Years.  This week I shared my daughters birthday with her, the last one I will ever share with her.  Next year by the time her birthday rolls around I will be long gone from this earth.

     I enjoy my time with Elizabeth, this year for her birthday Robin and I ordered in food from her chosen restaurant, had desserts from an area bake shop, watched a movie and then played some Mexican Train Dominoes, which is a bit of a family tradition.  It was a quiet but nice afternoon and evening.  As much as I was enjoying this time I will admit that I was struggling a bit, but I managed to hold it together until after Elizabeth had left to go home.  Elizabeth had just gone out the door to go home when the emotional floodgates burst open, the devastation of knowing that I will never again be with her on her birthday sharing the joy of her reaching another age milestone.  No more birthday cards or gifts to buy for her, it’s done, it’s over, she will carry on without me as she should, just as I have after losing my own parents.  I suppose it’s this whole circle of life thing.

     While Elizabeth was here I had joked with her that I was struggling with this whole having a Middle-Aged Child.  Earlier in the day I had shared this lament with my Step-Mother, but I gained little sympathy from her as she pointed out that all of her offspring are well into their senior citizenship.  Intrigued or perhaps depressed at this thought when I shared it with her, Elizabeth pulled out her phone and goggled the average life expectancy of a female in Canada, and learned it is 84.47 years, so having just turned 42, she was indeed “Middle-Aged”.  There is no disputing that she does actually look 10 or 15 years younger than her actual age.

     There was a time Elizabeth and I would plan adventures for her birthdays.  For her twenty-third birthday I flew to New Zealand to spend three and a half weeks touring the south island with her in an old rental car we named Sputter.  On her actual birthday we were backpacking across lush green mountaintops, going from warm sunny weather into an ice storm and back to warm temperatures as we came down out of the mountains.  This was only time I ever had Elizabeth all to myself on her actual birthday, it also lives on as one of my favourite memories.   For her twenty-fifth birthday I picked her up in Ottawa and we drove to Quebec City for a few days, this also coincided with a brutal cold front that was setting record low temperatures for the month of January there.  We booked a walking tour and the poor guide must have thought us crazy, it was only the two of us on the tour, he added a lot of church interiors to the tour just so we all didn’t freeze to death.  When Elizabeth’s twenty-seventh birthday was rolling around she was living in England and we decided to meet in Paris for her birthday adventure.  I met her at the Charles DeGaulle Airport and together we hauled our suitcases onto the subway and found our way to our rented apartment for the week.  Okay if I’m being honest here, Elizabeth found our way to the apartment, I just followed along like the well behaved parent I was.  We walked all over Paris for the entire week, and on Elizabeth’s actual 27th birthday were standing on top of the Eiffel Tower together, another life highlight for me. 

     I would like to introduce you to the amazing woman who has the good fortune, or perhaps misfortune of sharing half my DNA,  Elizabeth Louise entered this world on a cold January day at 3:58 p.m. at the Niagara Falls General Hospital.  She was named after two of her great-grandmothers.  If memory serves me correctly she was 6 pounds 8 ounces and measured 17 inches tall.  I was there when she made her entrance, but in all honesty it’s all a bit of a blur to me now.  

     She grew up being a happy child, an active child and a pretty well behaved child, yes and dare I say it, a very cute child. 

          We moved to a country home where Elizabeth stayed with my wife and I, until she moved to her Mom’s the summer she was fourteen.  Elizabeth and I always got along very well, she was a good helper and like to learn so she and I would be building or fixing things in the workshop, or changing electrical fixtures in the house or working on the truck or tractor.  I was a runner and when I would go for a run Elizabeth would often join me on her bike, carrying my water bottle.  During the run we would have the nicest conversations, away from all other worldly distractions.  It is one of the things I am very grateful for, that Elizabeth and I were always able to talk.

     When she finished the University of Ottawa she went to New Zealand and Australia living in each country for six months.  Later she moved to England and lived in Leeds for a year, using her grandparent’s British Lineage to get her a work Visa.  After returning to Canada she lived in Toronto before meeting a partner who she followed out to Victoria for several years, and then down to Colorado for several more.  

     She has worked for Ikea in four different cities and three different countries.  Then in her thirties she decided to go back to school where she qualified as a welder which is the career she continues to pursue.

     Elizabeth has always been somewhat fitness oriented, maybe she thought it looked like fun all those years earlier when she rode her bike beside me as I ran.  One year she gave me the gift of running with me in a Father’s Day 5K in Ottawa, it was her first race.  It was cold, it was raining and there was a large hill on the course.  We finished that race side by side but she was in tears and physically spent.  I thought that might have been both the start and the end of her running pursuits, but it turned out she was no quitter.  We ran numerous other races together over the years, and in time I no longer had to wait for her, it was her waiting for me.  In time she has beaten just about all my running records, and done several marathons compared to my one.  If that wasn’t enough she then took up Triathlons and eventually completed an Ironman, finishing under her goal of fourteen hours.  Now days she is also competing in fitness competitions through her gym, in her last one she won her age category and was the third female overall.  She was, and continues to be a fitness machine.  

     Now the person behind all these achievements also happens to be one of the nicest, kindest, most thoughtful people you could ever meet.  Yes, you’re right I am very biassed, but I’m also right about this.  She makes me so very proud, she will live on long after I am gone, and where she goes, a part of me will always go with her.  

     Sometimes in life we search far and wide for inspiring people or great stories, but sometimes we should stop and look a little closer to home, because sometimes those around us have stories just as amazing as those we seek out.  Such is the case with Elizabeth, this beautiful, kind, wise, world traveller, adventurer, athlete and all round incredible person.  She also happens to be my daughter, my legacy, and my best contribution to trying to make this world a better place.

     When you spend thirty one years arresting people you are bound to meet some brilliant criminals.  The story that follows is definitely not about one of them.

     I had only been on the job for a year or two so I would frequently be sent to calls that were different than any I had ever been to before.  It was the late 80’s and a few days before Christmas when I was dispatched for a Theft Report at an apartment in the east end of the city.  I arrived at the four storey brick building and proceeded to the basement apartment I had been sent to.  

     After knocking on the door it was quickly answered by young man around 24 years old who was in obvious distress.  I hadn’t even made it all the way into the apartment when he told me, “I can prove it, I have evidence.  I saved the condom, it’s in the toilet”.  Let’s call him Joe.  Even as a young officer I was having trouble connecting the dots in my head.  There has been a theft, there is a used condom in his toilet, what has been stolen? I must admit that Joe seemed a little disappointed in me when I declined to seize the used condom as evidence.

     I managed to get Joe calmed down and seated on his couch beside his Christmas Tree which was fully decorated with sparkling lights and tinsel.  He then proceeded to tell me the story of this theft which had him so upset.

     Earlier in the evening Joe had found himself feeling a little lonely so he decided to call Teddy Bear Escort Service and order himself a little company.  A while after he made the call there was a knock on the door, he payed the driver $160 the driver then left, while the female came in for a one hour visit.  Let’s call her Destiny.

     Now Joe decided he wanted to impress his new friend and showed her his fancy watch that was on the night table beside the bed.  He told her about how expensive it was and that he had just gotten it.  Joe felt it was important to make a good impression on Destiny.

     In Joe’s mind I’m sure he felt Destiny was impressed, Joe and Destiny then did what escorts and their clients normally do.  I’m sure in Joe’s mind it was amazing, in Destiny’s mind maybe a little less so.

     After the business transaction was complete Destiny got up from the bed and went into the bathroom to freshen up.  When she came out Joe went into the bathroom where he disposed of his vital piece of evidence, the condom in the toilet.  

     Joe strutted out of the bathroom to find his new friend Destiny was fully dressed and just going out his front door.  Joe was disappointed to see his new friend leave so soon.  

     Joe wandered over and sat down on his bed, savouring in the afterglow, and that’s when it happened.  Joe looked over and saw the empty spot on his night table where his watch had been.  Panic set in, how could this happen to him?  Joe being the deep thinker that he was did the only thing he could think of doing.  He called the Police  and reported the theft of his watch.

     I sat there thinking about the bizarreness of this call, definitely not something we had covered at Police College.  So I called up  Teddy Bear Escorts and told them who I was and that I wanted to speak to the woman they had just sent to the address.  The woman on the phone told me that they had most certainly not sent anyone there.  I then explained that I didn’t care why the woman had been sent there, that I was investigating a theft and that was where my interest ended.  There was a pause and then she said she would have her phone me.

     I had some time on my hands waiting for Destiny to call me back,  so I checked Joe through the Police Computer system and found that he had an Outstanding Warrant for Failing to Appear in Court.  Being the conscientious officer that I was I arrested Joe on the Outstanding Warrant and transported him to the Police Holding Cells.

     At the station Destiny called me back and I could sense how annoyed she was.  She explained that she attends far nicer homes than Joe’s, and that she certainly didn’t steal his stupid watch. 

     I had lodged Joe in the cells and was getting ready to leave when the Custody Officer told me I had another phone call.  I took the phone and spoke with Joe’s brother who asked that I tell Joe that he had found the watch, it had fallen off the night table and was on the floor beside the bed.  I went down to Joe’s Cell to give him the happy news, but it seemed that this update just depressed him more.

     Now I would like to fast forward about twenty years, I am now working as a Detective at the downtown station.  I was called to the front desk for an Extortion, a wife stood there and as soon as my partner and I introduced ourselves the wife who was quite clearly furious turned and stormed out.  The husband who looked like a beaten puppy remained there with us.  Let’s call him Fred.

     Fred then told us about his morning.  After working night shift at a local factory he was driving home when he saw a woman standing on a street corner who caught his eye.  Circling the block he stopped to chat with this lady and they came to a, let’s say an agreement.  This lady got into Fred’s car and they went and parked somewhere for a while.  After spending time together Fred dropped his lady friend off and continued on home to his wife.  Unbeknownst to Fred, when his pants had been around his ankles his new friend was, among other things, stealing his wallet from his pants.

     Upon arriving home Fred was met by his very angry wife, apparently after dropping his new friend off his friend had called the number in the wallet and left the message with his wife that if he wanted his wallet back he had to bring $500. to a downtown street corner at a prearranged time.  

This old guitar taught me to sing a love song

It showed me how to laugh, and how to cry.

It introduced me to some friends of mine

And brightened up some days,

And helped me make it through some lonely nights.

What a friend to have on a cold and lonely night.

     John Denver wrote the above lyrics about a guitar he was given by his grandmother when he was an awkward and lonely twelve year old.  One day it was stolen and years later he finally got this treasured guitar back, that night he wrote the song This Old Guitar.  When John Denver died in 1997 he was cremated along with this same guitar and their ashes were spread over the Rocky Mountains.

     I suspect I was like most young boys when I was growing up, we wanted to be Hollywood Actors or famous musicians or Police Officers (thank you Adam 12) and if you were Canadian, you of course wanted to play in the NHL

     I quit playing hockey when I was around twelve years old when I suddenly had a nasty coach who was nothing more than a bully and took every ounce of joy out of the game for me.  Although I did act in High School and performed in several Drama Festivals, Hollywood never came calling and I never went looking.  I was more fortunate than most to achieve my dream of a career in Policing.  That leaves my dream to be a famous musician.

     I still remember the Christmas when I received my first guitar.  I’m sure my parents thought it would just be a passing fancy.  There is a picture of me holding it in front of the Christmas Tree, wide grin on my face, electric guitar with polished red wood and ivory inlays on the neck.  Probably the best, certainly the most lasting gift my parents ever gave me, the gift of music.  Although I can’t remember the name of my first guitar teacher I can still picture him, a tall thin man with a heavy accent who struggled to remain patient as I tortured that poor guitar.

     In time I traded in that shiny red electric guitar in on my first, and only handmade Classical Guitar.  I had no idea when I bought that guitar that it would be with me for the next fifty years or so.  

     My skills as a Classical Guitar player were mediocre at best, but the study of classical music did teach me how to be a guitar picker, someone who played with his thumb and fingers.

     As far as fame and fortune goes regarding my musical career, I did play on a local TV Talent Show once singing and playing my guitar, a classmate had wandered into his living room and saw me playing on his TV, I think he may have been the only person who saw it.  I also was in a Drama Festival once where I played my guitar during part of the play.  There was of course my Rock Band playing Proud Mary in a Grade Eight Variety Show, when I think back now I can only imagine the parents cringing at the racket we were making while butchering a classic song.  Oddly enough after all these performances there were no agents waiting by the stage doors to sign me to a record contract.

     The only other playing in public I really did was at the weekly Folk Mass at my church.  Some friends and I would play and when we could, we would slip in a pop song but only when we could somehow convince the priest it had some religious connection.  We must have done okay because soon the Saturday Night Folk Mass was one of the best attended masses the church had.

     Somehow as I emerged from the teen years my comfort about playing my guitar or singing in public slowly evaporated.  My guitar and I then took up a more reclusive existence.  Yes there were times when perhaps I went months or even years without playing, but somehow we always found our way back to each other.

     When you play a guitar you develop calluses on the ends of the fingers on your left hand, and if you don’t play you lose those calluses and it hurts to play.  As well the fingernails on your left hand are cropped close so you can easily and firmly press the strings hard against the frets to get clear tone.  If you are a picker like I was then the fingernails on your right hand tend to be longer to assist you in plucking the strings, the sound from nylon strings is softer quieter when plucked with a finger, and louder and more distinct when plucked with a fingernail.

     At one point I found myself living alone in a small one bedroom apartment with lots of time on my hands.  My guitar and I got reacquainted then as I quietly played in the bedroom, so no one passing in the hall would hear me.  My friend Suzanne lived a few blocks away and we began playing together, this small amateur duo who played just for the joy of playing.  She has a wonderful voice and there were times when I would pause after a song and think to myself that we sounded pretty darn good.  Not sure that we played before anyone other than our partners, but it didn’t matter, we were playing for ourselves.

     Eventually we moved in different directions and I was back to playing on my own.  We did get together occasionally but I had returned to being a solo player.

     My guitar was like that friend most of us have, someone you don’t see or hear from for a long time but then you get together you just pick up where you left off.  My guitar was never angry that I hadn’t visited for a long time, it was always glad for any time we spent together.  Bringing it out of it’s hard case, tuning the strings to bring back it’s beautiful sound and then playing.  Interesting isn’t it, you don’t work the guitar you play it, because playing the guitar is a joyful thing to do.  Although the song you play may not sound perfect there is a good chance you will have played a few perfect notes, and maybe as you sang maybe once or twice your voice was actually in tune.  My joy from playing the guitar comes from inside me, just me and a good friend having fun together.

     Sometimes things happen that are out of our control, sometimes you have to make decisions that are hard for you, but are best for your friend. That time came for me and my guitar, my hands just don’t work like they once did and now playing the guitar only brought frustration and sadness.  Now this is a handsome handmade guitar and I expect I could have sold it for a decent price, but it was also a dear friend so it wasn’t about the money, it was about finding my friend a good new home, somewhere where it would be well appreciated. 

     I sat it there by my front door and when my friend Suzanne came to visit I sent it home with her.  She is the one who I played it the most with, and I know she will look after my friend well, maybe she will think of me from time to time while playing.

     What is a life worth living?  Perhaps more importantly, when is a life not worth living?  When you have a terminal illness you can find yourself pondering such things.  You have no choice but to sit back and watch as your life slips away.  What you were able to do yesterday, you may not be able to do today.  Although your brain may be tired it still works as well as it ever did and it has these two lists, one for what you can still do, and one for what you can’t do anymore.  As one list continues to grow, the other is dwindling down, dwindling down to almost nothing.  

     You know that old saying about seeing the light at the end of the tunnel, normally it refers to coming out the other end of the tunnel, and leaving whatever problem behind you.  Not in my case, in my case that light is a locomotive speeding down the tracks, through the tunnel and straight towards me.  The light I see is the headlight and its getting very bright, and very close.  I can hear the sound of the train and it is close enough that I can smell it.  I should get off the tracks, jump out of the way but my body isn’t responding, the train is blowing it’s horn and neither can the train stop in time, nor can I avoid what is coming.  All that remains is the time needed to cross the space between the speeding train and me standing dead still in the centre of the tracks.  

     As this disease has progressed I have often pondered the question, when is a life not worth living?  What line does one cross and then decide that life is no longer worth living?  Probably not something most people would consider if they aren’t aware that their time is running out.  

     Is life worth living when……your legs stop working….when your arms grow too weak to lift yourself up….when you can’t sit up anymore……when you can’t lift your arms over your head anymore to put on a hat……when you can’t roll over in bed…..when you can’t shower yourself or use the toilet by yourself……when you no longer have the strength to lift a cup of tea……when you lose the ability to speak and be understood……when you lose the ability to do your writing because even that last finger you’ve been typing with is no longer listening to what your brain tells it to do.  I would like you to think about that……where would you draw your line?  

     Now let me share something with you, where you think you would draw your line, and where you would actually draw the line are likely two different places.  Where I thought I would draw the line when things were being pondered hypothetically is well…., well I have passed that line and I am still here.  

     I know many others who are travelling the same road that I am, and who are fighting the same monster.  During our online meetings we all look at each other, assessing each others points in our journeys.  I look at some and tell myself that what is enough for some, isn’t enough for me.  Don’t get me wrong I respect their personal decision to hang on, but I don’t believe I would do the same in the same circumstance.  It’s an incredibly personal decision, there is no right or wrong, all I can do is try to get it right, right for myself.   My dear sweet wife is wise enough to acknowledge that this is my decision alone and she will respect whatever I decide.  I do seek and accept her input, but in the end it is my decision alone, and it should be as no one else should have to carry the burden of that decision.

     So today, is my life worth living?  The answer is yes it is.  Why you ask?  My life is worth living because this morning Robin and I spent twenty minutes laying in bed together wrapped in each others arms.  It is the only time when my illness isn’t front and centre, the only time I can forget about being sick and am just a very lucky man and for twenty minutes I am in the best place in the world.  My day with Robin will have many tender moments, many I Love You’s, and a good deal of laughter.  I also get to go out and take our dog for a walk, enjoying the fresh air while sharing the love and companionship of our sweet loyal girl.  A dog who likes to remind me that you don’t need much to be happy, you just need to focus on the good things all around you.  And finally I will have some family or friends visit, sharing stories, memories, laughter and their good company.  Good friends who know that under this mess of a person I have become is still the same person who they have known for years.  So yes, there is still goodness amidst the daily struggle to survive.

     I have met the person who will in all likelihood be easing me out of this world.  She is a pretty young doctor with a kind gentle nature who is good at putting us at ease with everything that is going on.  I call her my “Killer Blonde”.  Imagine having a Doctor come to your home, spend an hour with you, actually listen to what you say because she doesn’t have to rush out the door in five minutes to get to the next patient.  My impression is that instead of being focused on how to fight whatever disease or illness they are faced with, they focus on quality of life for their patient.  There is a quote by Steve Leder here that I think fits.  He suggests that you ask the doctor this question, “Is what you are thinking of doing going to prolong my life or prolong my death?”  I believe this is a very special kind of doctoring that Palliative Care Doctors do, and from what I’ve seen I believe I have a good one.

     For now I am hurrying to get done what I need to get done, to make things easier for after.   Although presently I am a mess getting messier, I would like for all my affairs to be neat and tidy.

     I spent thirty-one years Policing in a economically challenged city with a population of over a half million people.  During that time I was involved in thousands of investigations, as you might expect, some of those investigations are forever etched into the fabric of who I am.  What follows is one of those stories.  My exceptional recall of the circumstances is because this is one of the calls that still haunts me all these decades later.

     I spent the first eight or nine years of my career as a front line uniform officer and that was where I was working when I was dispatched for this call.  All these years later I can still picture the house that I was dispatched to on that nightshift.  It was in the downtown core, a two storey red brick home with a white front porch badly in need of paint, in a litter strewn neighbourhood that had seen better days and was still on the downward slide.  It was the first house on the east side of the street behind what had at one time been a large car dealership. 

     The call was for a suicidal female so there was some urgency to it and I recall arriving there first.  I went in prior to my backup arriving, upon entering I observed the stairs to the second floor were on my right, the front hallway led to the dark kitchen at the back of the house, the sparsely furnished messy living room was to my left and behind the living room was the dinning room which where I found her.  The glass had been smashed out of a cheap China Cabinet and the woman sat there at the dinning table, tears streaming down her face, bloody slashes to both wrists and up her arms, blood stained glass that she had used on the table in front of her.  She was not aggressive, she was not threatening, she was just someone drowning in her own despair.   Let’s call her Mary.

     The ambulance arrived and did what ambulances do, I had explained to Mary that she was going to the hospital, not going was not an option.  My backup had arrived and as I was updating them in the front hallway I looked up and saw those scared little eyes peeking at me through the balusters on the staircase.  I am guessing she would have been about four years old, dressed in a white flannel nightgown with small flowers on it.  I guess all people coming in and out, and the noise from police and ambulance radios had probably woken her from her sleep.  Let’s call her Louise.  I went up the stairs and sat down near where she was hunched down.  Sitting down avoided me towering over her, I was sure that she was scared enough.  I don’t remember all of our conversation but I remember holding her hand and looking her directly in her eyes when I told her that her Mom wasn’t feeling well and that I was going to take her to the hospital where the doctors would make her feel better.  I told her that everything was going to be okay and she would see her Mom again soon. I told her that her Dad was coming to pick her up for the night.  I then went back down the stairs leaving those wide innocent eyes watching me.

     While my backup stayed to await the father’s arrival I followed the Ambulance up to the nearby hospital that had a Psych Assessment Unit.  In those days it wasn’t uncommon to spend most of a shift in the Hospital E.R. waiting to have someone assessed by the Psych Department.  Normally it was a two officer job but the streets were busy that night so I told my backup that I would be okay on my own.

     The process at the hospital for such things is that first the person has to be medically cleared, the Emergency Doctor speaks to the person we have brought in for 3 or 4 minutes before agreeing that they need an Psych Assessment.  The problem is in a big city E.R. it usually took between two and ten hours for the E.R. Doctor to see the person, depending how busy they are.  

     After getting past the Triage Nurse, Mary and I were allowed to wait in one of the treatment rooms.  It was a busy night in the E.R. so I figured we were going to be there for a while.  I like to think that I am good at talking with people and it wasn’t long before Mary and I fell into easy conversation.  I learned about her failed relationship with Louise’s Dad, and her struggles as a single Mom trying to make things work.  The more we talked, the more the walls she kept around her slowly came down.  I came to know Mary and a lot of her challenges.  Like many, Mary didn’t trust Police, but as the minutes turned to hours I could sense that I was slowly gaining her trust.  

     Obviously I had to remain guarded about what I shared about myself, but a few tidbits of information did much to help her understand that there was a human person behind the badge.  

     Like so many others Mary had had some contact with the Police, she had some alcohol and substance abuse issues, but as her guard came down I got to learn about her as a daughter, a sister and a mother.  Yes she was a broken person, but she was a good person struggling to do her best in the unkind world she found herself living in.

     After seven or eight hours Mary and I were like old friends, talking easily, even sharing the best meal we could put together from the hospital vending machines.  Our time together had helped bring her out of the dark place I had found her in.

     The E.R. Doctor finally came in, I still vividly recall her, a pretty young greek woman with dark curly hair down past her shoulders, maybe in her early thirties.  She spoke with Mary for all of two or three minutes and then informed me that she was releasing Mary.  I asked about the Psych Assessment but she told me that Mary didn’t need it and then walked out of the room.  Prior to this I had brought many, many people in for a Psych Assessment and never ever had I had the E.R. Doctor decline to send the person for one.  I was just a lowly Police Constable, certainly not in a position to argue with a Doctor.

     Mary assured me she would be okay, and although it was against protocol I offered to drive her back home.  As she got out of the car I gave her my business card, told her not to be afraid to contact me.  I had reached the end of my nightshift and I returned to the station before heading home to bed.

     I returned to work that night and as I was heading into the briefing room an officer from the opposite squad stopped me and told me that Mary had killed herself during the day, jumped to her death from a bridge.  My business card was still in her pocket.  I felt like someone had just hit me in the centre of the forehead with a sledge hammer.  Survival as a Police Officer means that it is wise to stay detached from people and circumstances, but I had let myself care, and now it hurt me to my core.

     I was seething as I went out to my Cruiser and drove back to the hospital where I found that pretty Greek Doctor and I told her that I wanted her to know that the lady she had refused to admit last night had killed herself today.  She then looked at me and said she was surprised that Psych didn’t admit her ……and I just stared at her while she looked back at me, both of us knowing that she was lying, that she hadn’t sent Mary for the Psych Assessment.  I then turned and walked away, there was nothing more to say, Mary was dead and there was no bringing her back.

     Envy is defined as a feeling of discount or resentful longing aroused by someone else’s possessions, qualities or luck.  Aristotle defined Envy as pain at the sight of another’s good fortune.  The Bible states Envy is a sin.  As one evangelical dictionary puts it, envy is the “sin of jealousy over the blessings and achievements of others.  The words Envy and Jealousy are interchangeable.  

     So it seems pretty straight forward that Envy is a bad thing, hard to see Envy as anything but a bad thing.  So I hope that you won’t think less of me when I share with you that I am a very envious person these days.  I envy so much, I spend so much of my day feeling envious of so many of those around me.  Don’t get me wrong, I don’t want for those around me to be pulled down to my level of struggle, I just wish that I was still able to live at my former level of living, the level that most around me still live at.  

     So what do I envy….where do I start…….

     I envy those who get to sleep in their own bed, with the love of their life.  I sleep in a borrowed hospital bed where I can grab onto the bed rail to help me roll over, since I can’t do that anymore on my own.  I look over at my wife sleeping quietly in the next bed missing the comfort received from reaching out and feeling her beside me in the depths of the night.  When a caress, embrace or soft kiss was all that was needed to chase away the demons and ease us back into a restful slumber.

     I have led a good life and had some adventures along the way, there were times when what I was doing in my career was quite dangerous.  You know what the most dangerous thing I do now is?  The most dangerous thing that I do everyday is I go to the bathroom, struggling to get in and out, legs quivering under the strain and exhaustion of standing, praying that I won’t fall and require rescue, or even worse break something.  I worry about the day when my legs stop working totally, and I know that is only days or weeks away.  I envy people who can easily and discretely take care of their bathroom needs.  

     I envy those who have the ability to be independent, I was once independent but now I’m totally dependant on others for my survival.  It is one thing to accept another’s help, it is another thing to require someones help for almost everything.  It is a hard lesson to learn, how to accept the constant help of others, not sure that there is anything more humbling.

     I envy those who are able to dress themselves.  My wife picks out my clothes, although she does accept my input.  I wait for her to have a break in her busy morning so she has the time to help me get dressed.  Something that used to be done so easily and quickly is now a major ordeal.

     I envy those who can quickly jump in the shower, wash, dry off and get dressed.  I feel like I have run a marathon by the time I just make it to the bathroom, then I need my wife to lift my legs into the tub as I sit on the shower bench.  I then do my best to shower myself while sitting.  I miss standing there under the shower head letting the hot water run over my body, it just felt so good.  Now I shut the water off, dry myself as best I can before Robin helps me get my legs out of the tub and helps me to my feet again.  I stand there on my unreliable legs while Robin drys the rest of me and I struggle out into the other room where Robin helps me get dressed, by which time I’m physically spent.  

     Your odds of getting ALS in Canada is .25%, or one out of every 400.  About 4% of people with ALS have something called Laryngospasms, basically where your vocal chords spasm and close off your windpipe so you can’t breath.  Yes I have hit the long odds twice, and I envy those who don’t know the panic off suddenly having their windpipe close off while you wonder if this is your time to die.

     Connected to the Laryngospasms, is the weakened throat and mouth muscles I now live in constant fear whenever I eat or drink that I will choke.  We were out to a restaurant with another couple recently and I spent the entire time extremely stressed that I would choke and make a big scene, embarrassing me and everyone with me.  I ate slowly with small bites and was still eating when everyone else's plates were empty and had been taken away.  I envy those who can eat and drink without giving a thought to the risk of choking.

     I envy those who can go out, get in and out of a vehicle easily, can climb those stairs into that really nice restaurant, just walk through that door without struggling to hold the door open and maneuver a wheel chair through the opening.  I envy those who can go out and just use the washroom, that don’t live in fear that maybe they drank too much and won’t make it home before needing a washroom.  Very soon my wife and I will not be able to go out in the van anymore because I won’t be able to transfer between the wheelchair and the van.  I will be trapped in my Condo, only able to go where my wheelchair will take me.

     I envy my friends who are living their best life, travelling or living their dream, friends that have a world full of possibilities in front of them.  I envy people who don’t have a major struggle to make it through every single day.  

    I envy people who can communicate easily.  You see my arms and hands are becoming non-compliant to the directions my brain is sending them.  Most of my writing on my laptop is now done with either one or two fingers.  Everything takes longer, and I don’t know that I will ever get the writing done that I wanted to get done before I die.  

     I envy people who can talk clearly.  You see for years I spoke very well, I had great diction, spoke clearly and intelligently during many Press Conferences.  I also felt I had a great voice, I used to joke that when I turned it on that I had that Late Night Radio Talk Show Host Voice.  Now I mumble because of the muscle degeneration, I dislike the sound of my voice, I don’t like talking on the phone now because I am hard to understand.  Now at Social Events I am more inclined to just sit quietly hoping no one tries to converse with me.  It’s not worth having to repeat myself two or three times and even then still not be understood.  No one wants to be a spectacle, yet that is what I have become.

    I remember warmth and snuggling in darkness.  Nudging my Mom’s belly for food, being bumped around by all my brothers and sisters,  Mom licking me and moving me around with her snout.  I don’t think I felt happy or sad, I just felt safe.  

     As time went on my eyes opened and I was no longer in the dark.  My brothers and sisters were all having fun rolling, nipping and chasing each other.  Then one day we all got to go outside for the first time, it was fun to be in the sunshine and the grass felt good on our paws.  People were coming to visit and they played with all of us on the grass.  I was very happy, every day was so much fun.  Then something strange started to happen, people came and some of my brothers and sisters went away with them.  Then one day this man and woman came and took me away, I was so scared, all I wanted was to be with my Mom.

     I sat on the ladies lap in the big machine that vibrated and went so fast.  When I looked out the window everything was just a blur.  She smelled different than the lady at my house, and both her and the man were talking to me in high pitched voices as the lady gently petted me.  I felt very scared, yet I wasn’t scared of these people, I guess I was scared because I didn’t know what was happening.

     After what felt like a long time the big machine stopped beside a house.  I saw there was a lot of grass around the house, I like grass.  I wondered if I could run and find my way back to Mom but the lady carried me into the house.  As soon as I got inside I could smell another dog, a different dog I had never smelled before, then I heard the barking.  The man called the dog Tia, she was bigger than me but not as big as my Mom.  She seemed very curious about me, I was curious about her, but I was also a little frightened of her.  I couldn’t  tell if she was happy to see me or if she was mad at me.

     The days went by, and then the weeks went by and I learned that my name was Kiwi.  Tia was my big sister, sometimes she played with me, but sometimes she would just go off by herself but I would always try to follow her.  She was smart and brave, and we explored every inch of that yard.  I couldn’t go home to my Mom because there was this big metal thing all the way around the yard.  I could see out through it but I couldn’t get out.  In time I stopped thinking about trying to find my Mom. Tia and I had to look after this man and lady, they became our human Mom and Dad.

     Dad would take us for hikes and taught us lots of things.  I think our human Dad might have been an old human because he started to move slower, but he still loved us very much, I could tell.  I really liked my life, we had lots of fun and I was always happy.  It had been many years and then one day a very noisy and flashy machine came and took our human Dad went away.  Tia and I never saw our human Dad again and our human Mom was very sad.  We moved from our home to a new home in the city.  This home was very big, but we only lived in a very small part of it.  It also had a magic room where we would go in, the doors would shut, the whole room would shake a little bit and then when the doors opened up we were in a different place.  Mom was still very sad and no matter how hard Tia and I tried we couldn’t make her happy.  One day Mom took us somewhere and then drove away, we never saw this Mom again.

     We now lived with a new human Dad, and he had three other dogs.  It was a bit crazy with five dogs in the house but our new human Dad took us for lots of hikes.  He also taught me how to play fetch with a frisbee and that became my new favourite thing.  We thought this was our new home but after a few months our Dad took Tia and I for a ride.  This was strange because before it had always all five of us when we went out.  We drove a long way away and we met a man and lady and they took us for a walk on leashes.  They seemed nice but it was strange as this had never happened before.  Then we got into a truck with the man and lady.  We never saw this human Dad again.

     We travelled for a long way with this new man and woman and finally we came to a house.  This house was different, there were no other houses around it and there was some short grass around the house but then there was long grass everywhere else.  Tia and I thought this would be a neat place to explore.  This new man and woman showed us around, it was different than anywhere I had ever seen.  There was a wild smell here, not like all the other dog smells in the city.  Sometimes I would smell other animals but I didn’t know what they were, but I could tell some of them were big.

     Once again the days turned into weeks, months and years.  Tia and I were very happy here, we would go on long hikes for hours and we would never be on a leash.  There was so much to see and explore.  Tia liked to go off exploring but I liked to drop a stick for my Dad, he really liked throwing the stick so I would always bring it back to him.

     Sometimes in the winter we would still go for long hikes in the snow when our human Dad would put these big things on his feet.  Sometimes when the snow was deep Tia and I learned it was better to walk behind Dad because otherwise we would get stuck and it was much harder.  Sometimes Carol and Sherry would come and when that happened Sherry would bring her dog Gus.  I didn’t really care for Gus but I think he liked Tia, and that Tia liked him.  

     Our new Mom and Dad worked in the yard a lot, Tia and I would always go out and help.  We would also keep the other animals away to protect Mom and Dad.  Sometimes these big bouncy animals would come into the yard and eat Mom’s vegetable gardens. Tia and I would chase them out of the yard, I think Mom called them deer.  Sometimes Dad would take us out to that other building, we had beds there and Dad always gave us lots of treats.  He would make lots of noise in here, he would get mad at me when I took the sticks in here, they were square and rectangular sticks, I didn’t understand why the outside sticks were okay but the inside sticks weren’t.  

     Tia was very brave and was always looking for an adventure.  Sometimes Dad called her Dora The Explorer, I think that was because she would wander off.  There were two things Tia was very afraid of though.  One was when there was a bad storm the really bright flashes of light and the loud explosions.  The other thing was when the weather turned cool and suddenly there were lots of trucks and men around.  The men would carry these long sticks and sometimes in the distance we would hear loud bangs.  Tia would get very scared and run away, twice she ran away for two night times.  When she came home she would be very tired and not feel well.  I was always glad that she found her way home, I worried when she wasn’t home.

     Then suddenly it seemed like Dad got very old, very fast.  He didn’t take us for walks anymore.  He and Mom seemed sad, Dad could hardly walk at all.  Mom and Dad seemed sad, our friends who came to visit seemed sad and then one day we left our home, now Tia and I were sad too.  

     We moved to another home like before with the magic room.  A lot of our stuff from our old house was in our new home in the big building.  It was strange to be back in the city, so many dog smells everywhere, so much noise and now we always had to be on leashes, that was hard.  

     When we moved to the big building I could smell that Tia was different, it gave me a bad feeling.  I could tell she didn’t feel well before Mom and Dad could tell.  Mom and Dad took her to that building where there were lots of other dogs and some cats were.  I didn’t like it when Tia went into the room and I had to stay out.  I howled and talked about how this made me unhappy, then Dad and I had to wait outside.  

     Tia started to feel better but I could smell that whatever was wrong with her was still there.  We learned to adjust to living in the city, but we still missed our last home.  Then Tia started to get more sick, this made me sad, it also made Mom and Dad sad.  

     One day Mom, Dad, Tia and I went back to that building with all the animal smells.  Tia wasn’t feeling well and Mom and Dad were sad.  The man who is gentle was looking at Tia who was up on the table.  And then Tia went away, I mean she was still there, but she wasn’t.  I don’t know why but I knew was never going to see Tia again.  

     Tia was gone, Tia who had been with me since I was 8 weeks old.  I was sad, Mom and Dad were sad, and we were all too sad to try to cheer each other up.