Going Out on 2 Limbs

This past month I had the opportunity to attend Aveda’s Education Summit in Minneapolis.  Aveda is a company that I have had the pleasure of working with over the past 10 years.  Approximately once a year they gather their top educators from around the world for a weekend of inspiration, education, and building strong bonds within the company.  This year’s theme was Inspire, Create, Change.  As part of this theme they had selected individuals from all over the world to share a message that fit this theme.   I was asked to share my story.

 (Color Educators of Spoke & Weal)

Being able to share my story with this group of people was very special to me.  Over the years I had done presentations and incremental parts of shows all having to do with the beauty industry.  This was my opportunity to share something personal and meaning to me. 

 The time limit I was given was 5 minutes.  5 MINUTES!   How could I ever tell my story in this amount of time.  I racked my brain trying to think of the most important parts or which parts would resonate with the audience.  Do I talk about the deep depression?  Do I talk about friends that stood by me?  Do I talk about learning to virtually everything all over again?  The truth is my story is, my story , and sharing it or any part of it was my new responsibility.  Its all of our responsibilities.

(INSPIRE, CREATE, CHANGE presentation)

During my time with over 300 beauty professionals  I shared about my new adaptations and about my emotions going through such a trying time and also the success that I have found but I feel the most important part of my message was to encourage everyone to share their experiences and stories that have made them who they are.  Watching people who I have my entire career looked up to and admire rise to their feet when I completed literally knocked the breathe out of me.  The support and love in that room that got me through the most challenging 18 months of my life was felt full force during that 5 minutes.   WOW.  Incredible!

 One person’s trial could seem so enormous or completely minuscule but understanding what drives each of us and what pushes each of us is the greatest gift of all. 

 I couldn’t believe the flood of people who began to share their incredibly inspiring stories.  Its motivating how resilient we as humans are.  Stories of loss, damage, and heartbreak started to transpire from my peers throughout the weekend in one on one settings.  I felt honored to be the recipient of these experiences being shared.  Not everyone can relate to limb loss but people can relate to depression, losing a loved one, or even financial struggle and those are the stories I encourage people to share because we are people just trying to make it through this insanely difficult world. 

Just as an FYI each amputation is very different from the next.  Having a below the knee amputation is far easier to adapt to then anything amputated above the knee. It’s a whole new ball game when you don’t have control of your knees.  Prosthetics for above the knee can run $50,000 more each, than prosthetics for below the knee. You have to get legs that need computerized motion as well as ports to keep them mechanically charged.  Can you imagine plugging in your legs at night right along side you iPhone 6 plus. Knees are a hard thing to replace and I thank God everyday that I was able to keep mine.  Also having a double amputation presents an impressive amount of challenges.  I’m not able to rely on putting any of my weight on one good full leg.  I have to put pressure on both of my legs.  I believe the statistic is that the body expends 70% more energy having a double below the knee amputation than you it would if it was a single amputation.  This doesn’t even consider what the energy difference is from having to deal with no prosthetic at all.   I tell you this not for you to feel pity, but to paint a picture as to the workout I get to have without even getting to the gym.  (win for me).

OK , so on with the story.  The night before my long awaited appointment to meet my new leg extensions I could NOT sleep for the life of me. Of course I haven’t really been able to get a normal amount of sleep since January.  I claim I’m still on hospital time.  Awake every 3 hours for about 2 hours consecutively all day and night long.  Which I’m beginning to think thats how we all should do it. It’s like 24 hours of power naps.  Anyway, I digress.  I am so anxious, nervous, and excited all at the same time.  I almost felt like I was going to show up for my appointment and they would tell me its going to be another two weeks.  This seem to be the case for almost three months.  I actually even called to confirm that all the parts were in and that I would have nothing to hinder my big day of growing an extra 13 inches or so.  

The time has come.  I’m there in the “trial room”.  (The place I get to try out my new legs.) Sam is with me because of course this had to be documented and there was no way he would let me go to such an important appointment with being present.  He’s the best!!!!  Ken and Matt (my two prosthetist) start pulling out these crazy gel like socks that have what looks like an enormous screw on the end and proceed to show me how to put these on.  Which by the way it looks like this screw has been surgically implanted into the bottom of my residual leg. And yes I have been asked many times if that were the case.  

“Its very important you center the pin in the middle of bottom of you leg” says Matt. “That way your prosthetic will fit perfectly and you can gain your balance easier.”

“You know Matt, I was a gymnast in my former life.”  was my reply.

“Well you will find this is very different.”

Really how hard could it be to literally balance my body on these foreign objects? Well I would soon find out.

Ken brought out my new Rush Foot prosthetics.  Rush Foot is a brand that I had coveted since researching other amputees working with prosthetics.  From what I heard it had the most realistic like feel and had the smoothest roll over with less effort.  Ken was kind enough to surprise me with these little gems. 

After a few clicks and locks of my pins sliding into their position I was ready to stand for the first time.  As I braced my hands on the parallel bars on either side of me and my iPhone ready to capture the moment via Sam, my body filled with emotion and a whole sanctuary of butterflies.  I can’t believe this was actually happening.

I pressed all 130 lbs. of my weight into the sockets of my new legs and stood up for the first time in what seemed to be forever.  My knees shook as I tried to find some sort of balance.  This was not a balance beam! Matt was right!  

“Holy S#*t, did you make me 7 feet tall” I yelped.

I felt so high and so tall.  I wasn't use to being this far away from the ground.  i was in fact only 5′9″.  (I have to work up to the ideal height of 6 feet).

“Put most of your weight onto your hands. Take the pressure off of your legs.” said Ken. 

“Yeah, that helps. Can I take step?” 

“If you feel ready, but make sure to always keep both hands on the bars.” Ken firmly stated. 

I took one step, then a second, and another.  Pretty soon I had taken about 10 steps.  I could not stop smiling.  Wow this is amazing.  I didn’t know walking could feel so incredible. I’m never going to sit ever again.  Like my little cousin Jackson said later when he saw the video of my first steps “Dell is finally free!”  I figured by now I would be in tears full of joy just like I had seen so many other fellow amputees on youtube do.  But not a single tear,  it was more like successfully surfing for the first time.  So excited to be up and going but concentrating so hard not to fall and ruin the moment.  I had a few moments of not knowing how to react but so excited that someone took the time to present such a wonderful gift.  All grins!!!!  ( I did however shed a moment of emotion later as I reflected back at such an incredible event)

Shortly the truth began to settle as I slowly walked back and forth between the assisting bars.  These things were heavy.  I can barely lift my feet of the ground. If I take my hands off of these bars I will surely fall.  I for sure was not this magical baby horse. I in fact can not walk nearly to what I had imagined.  This was going to take work and patience.  Matt reassured me that this was going to be a process.  Don’t rush it, he insisted.

I for some delusional reason thought I would be walking out of the Hanger Clinic leaving behind my dreadful wheelchair.  I didn’t think I would need physical therapy.  Its funny how in our minds we think something as simple as walking would just come naturally back to us like riding a bike. After all I have been doing it for 30 years.  My body just wasn’t ready.  

A good girlfriend of mine, JP, told me this past week after I shared with her this experience about this idea of when we as adults change our thought process from being babies.  She discussed with me this concept of babies not understanding that giving up is ever an option.  Children learn to walk because it is their only option.  They fall over and over and over again each time continuing to try until they get it.  Same thing with learning to speak.  They just do it.  Babies never think “Well I guess I’m just not the walking type” or “I’m not cut out to ever speak.”  I thought this was so interesting to think about.  We as humans somewhere along the way have accepted that giving up is an option.  I hear and probably say things all the time to the effect that “I’m just not built to do that.” This simple dialogue between JP and I has completely changed my outlook on trying everything.   

Even though I couldn’t walk unassisted on Sept 2nd. there is going to be a day that I will.  I'm so excited to be underway to the next step of my journey.  First things first, I need to get all new shoes.  You can’t have new legs without getting new shoes.  I’ve always been one to justify a new purchase and what better justification than getting a new pair of legs that needed to be accessorized.  Which I will tell you that I went directly to the Asics store and found that even though technically my new mannequin feet were a size 9 I could also purchase a 8.5 or a 9.5 shoe if a 9 wasn't available.  I would never feel the difference on my toes.  And there my friends is the silver lining.

The next day I think I wore my legs for nearly 10 hours which was probably 8 or 9 hours too long.  I didn't realize that when Matt said this was going to be a process he meant work up to the tolerance.  I was kind of like the kid who got a new truck for Christmas and played with it too long on the first day.  I didn’t want to see my legs for the next two or three days.  I was trying to recover my throbbing legs.

When wearing the prosthetics you don’t feel pain on the end of your residual leg like you think you would.  There actually is no real pain at all.  You more or less feel pressure all over.   There’s a tendon just below your knee that can withhold incredible amounts of pressure and weight. This is where most of your weight is held and the sockets are designed to take the weight there so you don’t bare any on the bottom of your leg. Its pretty incredible.  I can only imagine that how a woman feels after a long day of wearing heels is pretty similar to what it feels like to wear prosthetics too long without properly working up the tolerance. 

Needless to say I have since arranged to see a physical therapist two times a week and have cut down on the amount of time I wear the legs.  

I do however see an incredible amount of progress from day to day.  I am able to walk across the room in my apartment using a walker after only 5 days of owning my new Rush Foot prosthetics.  

As babies we learn what we are shown and what we observe.  As we grow older we continue to learn it seems from what others have already paved the way for.  For example we learn to eat with a fork because our parent gives us a fork and we watch them use it.  We open doors, use step stools, turn on electronics, and nowadays 3 year olds can use any Apple product better than the developers themselves.  These are all things we do without question or hesitation.  How do we react when mobility, sight, or any other ability we have is suddenly stripped away?  

My whole 31 years of living I have done everything that someone around me has done before, allowing me to learn from what has already been tried.  As much as I like to think I was some sort of innovator or a path maker.  I have quickly realized that when it came down to it I had a whole world filled with people around me who have or were already doing anything I desired to do myself.   Now my legs are gone.  Well 1/3 of them anyway, but an important third nonetheless.  How am I going to be able to do all of the things I previously knew how to do and wanted to do in the future.  May 26th 2015 (the day of my amputation) was the day that ended all hope for being able to use my legs made of flesh and bone again but also marked the beginning of finding out who I was and what I was going to allow my limitations to be.  

Without the use of my legs I no longer knew how to get from point A to point B. I didn't know how to cook, use the restroom in a traditional way, make my bed, walk the dog, get the mail, shower, do laundry, etc.  Really the list could go on.  Its amazing how not having full use of my legs challenges more than walking, running, or just standing.  It affects everything.  If you want a small glimpse of what this feels like you should tape your thumb to your palm for only 24 hours.  You too will begin to understand the frustration of everyday obstacles.  AND THATS JUST A THUMB. ( My stepdad is missing his thumb and so he can share in my frustration...ha)

So at this point I have no choice but to figure life out all over.  People with a singular limb complete marathons,  How do I go from learning to get in a car to running a marathon?  Well I can tell you it helps to know its definitely one challenge at a time and one day at a time.  However there is a grieving period where you don’t do anything at all or at least this was my experience.  If food was not made for me and brought to me I wouldn't eat.  If there was a 2 inch ledge to get into the next room I didn’t go in.  If the tv was stuck on America’s Next Top Model reruns and the remote was out of reach I had a day spent with Tyra.  

Slowly, probably out of starvation and supermodel overload, I began to make each day different.  I went from eating pre-peeled oranges to cooking my own bacon and eggs.  I was able to find ways to get the sugar down from the top shelf.  I suddenly found myself walking the dog (cost me a bag of treats), doing laundry, and taking public transportation.  Thank goodness for Lyft.  By the way Lyft will automatically take anyone with a foldable wheel chair or a service animal no questions asked.  Uber requires you to request a car willing to take “access” type people.  Its not available in every city and the cities it is available in there is about a 1 in every 15 car ratio.  #WinForLyft.

All of these new victories became more frequent.  My poor mother started getting phone calls almost every other day if not everyday.  

“Hi mom! I made a chocolate cake all by myself.  I even put it in the oven.”

“Hey mom!  I organized my closet today.”

“Guess what mom! I went to the store by myself and bought milk.”

She was always so excited and so proud. I could tell she had that ‘my kid is the smartest kid in 5th grade’ look on her face.  It was silly to feel the need to tell someone but if I didn’t then it wouldn’t seem real.  You’ve heard that expression If a tree falls in the woods and no one is around does it make a sound.  Well, I needed to make sure someone heard the tree falling.  

To continue my quest to find my limitations I spent a week with my extended family camping in the woods for our family reunion this past summer.  It was the first time I was going to have to really put all of my adaptive skills to the test.  My parents own a camper so I knew I wasn’t going to be “slumming it” in a tent (real camping). However my dinosaur of a wheelchair was not going to be able to fit in there.  My mom bought me a hot pink office rolling chair so I can shuffle myself a little easier, which in the end I just scooted across the floor.  Lets be honest when you are camping you don’t really spend that much time inside anyway.  

At the end of the week camping I will say I spent about 36 hours upset and feeling defeated.  For years I have been attending these reunions and have taken part in every festivity and aspect of what goes into a reunion. This time was different.  I was different and it was the first time my ever-so supportive family was seeing me in this light.  Being in a campground with a wheel chair I found myself “stuck”.  It wasn't easy wheeling that chair over roots and rocks.  I would get myself to one circle of people who were catching up and visiting only to find that naturally the circle moves as people are called to different areas of the campground.  There were nearly 70 people in attendance so there was a lot for people to see and do.  I couldn’t go swimming with everyone because I was still healing from surgery.  I wasn’t able to take part in a lot of the games because they were so physical and the games I could take part in I needed to be at the end of the relay or take part in something stationary.  This was not how I remembered spending my time at the reunion.  It was different in every aspect.  My conversations were different, getting through the food line was a challenge, even sitting by the fire cooking marshmallows was a luxury I passed on.  

After my silly 36 hours of moping about how my family reunion was different I realized “wow it was different”.  I accomplished so much.  I spent 7 days in the woods not standing once and was able to have a great time.  I crawled in and out a camper 5 times a day up three steps.  I cooked crepes for my entire family for the breakfast I was assigned to.  I rode a four wheeler all week long through the mountain side.  I took showers outdoors all by myself.  And I used the outhouse completely independently, which for someone who was using a bed pan for over two months, this was the greatest accomplishment of all.  These were all things that I took for granted.  

Cousins, aunts. and uncles would watch me crawl onto the four wheeler to go get ice or prepare my own plate of food and would say “You’re my hero”.  “I couldn't be that strong.” “I don’t know how you do it.”  My reply was and is still always this.

“I’m not a hero, I do what I have to do and what anyone else would do when faced with this challenge.”  

You never know how strong you are until everything you know is taken from you.  My world was taken from me only to give me a bigger one and brighter one.  I get to feel victory every single day.  I get to know my limitations and how to overcome them.  I get to understand human will power more than ever before.  And most importantly I get to experience life on the other side.  

There is nothing more powerful than getting the chance to live in someone else’s shoes.  I have the opportunity now to see what it means to be “disabled”. What it means to be an amputee.  What it means to have every person in the room notice you and instantly feel sorry.  

I don’t feel sorry.  I now drive my own car, I go stand up paddle boarding on the weekends, and I am currently registered to compete in my first crossfit competition this November thanks to Crossroads Adaptive Athletic Alliance.  All of this is possible because I realized my limitations and have overcome them one day and victory at a time.  

No words can truly express what its like to feel like you are living someone else’s reality.  It’s scary, it’s difficult, it’s empowering, it’s humbling, it’s enlightening, it’s surreal, it’s magical.  

I am Adaptive.

I am Able.

I am an Amputee.

And I am Proud.

“Lady I need to go to the bathroom or you’re going to have a problem on your hands.  Don’t you have a bedpan or whatever it’s called.” Was my reply.  My mother’s a nurse so I’ve heard all sorts of bedpan horror stories.  

“Can someone bring a bedpan” The nurse yelled

“Did someone ask for a bedpan?” A man poked his head in to ask.

“Yes a bedpan please” said the nurse.

“IF SOMEONE DOESN’T GET ME ONE NOW IT WILL BE WAY TOO LATE” that was me of course.

The nurse was shocked I instantly knew what to do with it as she tried to assist me before I snatched it out of her hand.  Sorry for the introduction to this next blog post but this was literally my first 10 minutes in the ICU.  I was horrified that I had already done about 5 things I never thought I would do in front of anyone.  Introductions to the staff came later as I clearly needed to get settled in.

The next 5 days were going to set the tone for what my future had in store for me.  As a team of Dr’s and I do mean a team of Dr’s each came to examine me their responses were rapid because at the time without me fully realizing the severity of the situation each of my organs were failing one by one. I had central line placed in my neck because I couldn't get antibiotics or pain medication fast enough.  I had to go on dialysis because my blood was literally poison and needed to be cleaned. I had trouble breathing so I was intubated.  Which is not an easy or pleasant thing to have done.

Being intubated involved having a tube placed down my throat so a machine can breath for me.  I also had a tube placed down through my nostrils so I could be fed because I was intubated for 4 days.  No drinking, no eating, no talking.  It’s like being imprisoned in your own body. The only thing I could do was look at people and hope they knew what I needed.  This for me was HELL.

Having all of these tubes placed and work done of course happened while I was sedated.  When I woke up I saw the most amazing thing one could see when something like this happens to you.  My mother.  As soon as my mom got the call she along with my stepfather and brother flew to LA and rushed to Cedar Sinai where I was fighting for my life.  My father, stepmother, and sister also had driven down from Idaho and arrived the next day.  

I always knew I loved my family but I didn’t know how much I loved them until I didn't know if I was going to see them again.  It’s amazing how you think you have the flu one minute and the next minute you have some disease you’ve never heard of before.  

My mom is single handedly the most incredible human being on the face of the earth, this may be a little bias.  This was going to be the start of 7 weeks by my bedside, 100′s of hours of crying phone calls, a few dozen homemade cookies to make me feel better, and a number of unmentionable things no grown man wants their mother to do for him.  Jane Zyph knows unconditional love. However she is a horrible player at charades.  Being intubated it was the only form of communication I had.  Luckily my brother knew exactly what I needed and when.  He also is a nurse. 

My family, boyfriend, and one amazing friend (Jess Brown) all stayed in shifts watching after me, never leaving me alone.  I also had someone call a very special person to come give me a blessing.  Seth Johnson, the husband to one of my childhood friends, and a companion of his came to the hospital upon my request to help ask God for help.  I grew up in the Mormon faith and understood what the power or prayer can really do.  I have seen miracles happen through prayer and I guess that was what I was hoping for this day.  Seth asked me if there was anything I would want in particular for him to include in the blessing and I motioned towards my feet.  I was worried about my legs because they weren’t right.  

There were a lot of powerful and beautiful things mentioned in my blessing however, I distinctly remember that during the blessing he never asked God to heal my feet but rather help me to understand his plan for my legs.  This was a key phrase that not only did I pick up on but my brother had also knew would be of significance.  Miracles don’t happen the way we want them to but the way we need them too.  I can’t begin to thank Seth for the miracle I’ve experienced ever since that night.

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No one ever told me how close to death I was and even exactly what I had.  It wasn't until weeks later that a nurse said to me “You look so much better than when i first saw you, I didn’t even expect to see you when I came back for my next shift”  Really?  It was that bad? I am so happy to be alive in this moment. The thing that you always think never happens to you was in fact happening to me.  

You know nurser are funny.  They make a few promises they don't keep, I think to just keep the patient...... hopeful I’ll say.  They told me over and over that I would be getting my intubation tube out each time being a lie.  I was suppose to get it out on a Thursday was the final say and it never came out until that Friday.  Once they took it out they said I could only have ice chips because my throat was too sore to handle anything. I WAS HUNGRY AND THIRSTY. After about two hours they said I could go ahead and have something to eat.  I am not kidding when I say the first thing they brought we was a salisbury steak.  Really I can’t eat anything and now I suddenly can have steak.  What happened to giving a little pudding and jello to warm up the ole esophagus.  Anyway i wasn’t complaining I was just glad to be able to finally feel something other than rubber in my throat.  However hungry I was, eating was a little tough because I wore a sore on my bottom lip from the tube rubbing against dry scaly lips.  I managed.

I finally got moved out of ICU once I seemed fairly stable. My dad, stepmom, stepdad, sister, and brother all stayed until I was settled in the general population (as I like to call it) side of the hospital and then of course they all needed to go back to their lives that had been abruptly interrupted.  It seemed as though no one left before apologizing and giving forgiveness for every wrong doing that we may or may not have committed on one another.  I needed my dad to know how much I loved him even if I never called as often as I should, and he needed me to know that he was proud of me even though my life went in a different direction than maybe he had planned. 

8 years ago I was diagnosed with HIV due to an unfortunate circumstance.  Very few people know, in fact this may really be my coming out paragraph to this detail of my life.  My mother knew and a few other family members.  I wanted to call and tell my dad but at the time he was dealing with some pretty heavy things and it seemed too much to burden him with at the time.  Of course time goes on and HIV is such a treatable illness that it almost seems invisible.  Needless to say my dad never knew until this visit to the hospital when it was a concern that it may have had something to do with why I was sick (which it has no relation to the infection I got).  He was hurt I never told him.  As a father I think he wanted to be there for me to make sure I didn’t bare the burden alone. He is a very protective man and I admire him for that.  I guess I was also protecting him from something to, I’m not sure what but sub-consciencely I didn't want to share the pain.  He knew now and he needed to get through all the stages of grief in a very quick way because I was possibly dying for a completely different reason.  

Often times we convince ourselves that we don’t hold grudges or we’ve been able to get over past dealings.  I learned that I never did let go of hurt feelings until now.  I am so lucky that I get to live and i get to live without regret of not saying the things I should have said or the things I needed to hear.

 Now years later as I’m going through my own personal journey preparing for amputation I was searching for others to give me inspiration and ran across a familiar face.  Its a small world that I find inspiration in the very guy that led me on one of my most memorable adventures.  Scotti now an amputee himself has become someone I look up to and has welcomed me into the world of adaptation.  Watch his story and hopefully you too will be inspired by such a brave positive person.

Below is a few photos of my canyoning experience!