An Open Letter to All Who Know Me:
Hi everyone,
I have been meaning to update you all about what’s been going on with me, but it’s been hard to find the right opportunity and the right words. As many of you know, I was born with a form of Muscular Dystrophy known as Spinal Muscular Atrophy. I had a brother named Steven who died from this disability when I was 11, and he was nearly 13. My disability is progressive in nature, and thus, it continues to get worse as I get older. Over the last 4 or 5 years, my health has started to decline a great deal. I have a severe scoliosis of my spine, which affects everything from my positioning to my breathing to my chronic pain. I have also developed arthritis and nerve damage in various limbs which causes pain and swelling. And now I have IBS, which is Irritable Bowel Syndrome. This causes me a great deal of discomfort everyday.
In the past year, sleeping comfortably has become harder and sitting in my chair is no better. Back in February, my chest started to feel like it was on fire, and this pain in my chest has spread throughout my back and my shoulders. I have medicine that helps it sometimes, but it does not always work. So oftentimes I feel like I have a full body fever, even though I don’t, and I’m always so hot. My anxiety makes all of my pain worse. And lately I have been more anxious than ever.
Some of you may remember, I was hospitalized in January of 2015 because I was suctioning phlegm out of my throat and injured my tonsils. I could not swallow for several weeks and had to start pureeing my food. Although I tried to keep my swallowing function in tact for as long as possible, my muscles have continued to grow weaker and weaker, and even though earlier this year I was still able to swallow partial whole foods during the day, my swallowing crashed completely over the summer. I noticed that I wasn’t able to swallow pureed foods, liquids, or even my own saliva.
My nurse told me to go to the ER, and they set me up with a speech pathologist whom I went to see when my brother, Brian, was visiting. At the follow up swallow testing, they saw that things were actually very bad with me, and I had to be immediately admitted to the hospital. When I swallow, some of it goes into my trachea, and it can go into my lungs and cause pneumonia. Basically I aspirate on my own saliva, but the problem is that I don’t feel it because my throat muscles are so weak.
I had to have an emergency feeding tube put into my stomach, and I am no longer able to swallow anything for the rest of my life, not even water or medication. Because of my IBS, this feeding tube causes me a great deal of pain and discomfort everyday. I’ve tried various medications and formulas, but nothing seems to be helping me. Some days are worse than others, but I don’t know how to fix it because the thing I need to sustain life is the very thing that is causing me so much pain. And then that pain spreads to my back, my chest, and my neck among other places. It also causes me to use the toilet more often than usual, which is a very time-consuming and exhausting process. The worst thing is that my swallowing gets really bad at night, and I feel like I can’t swallow anything because it just pools in my throat. This makes me more anxious, and sometimes I can’t sleep, which is bad because I need sleep to recover. I also have a lot of extra phlegm that I am constantly having to suction out of my throat and my nose. I sometimes can’t even leave the house without my portable suction, and it’s super loud. Not convenient for the movies or a concert or things like that.
The speech pathologist in the hospital basically told me that things are going to continue to get worse, and there’s really not a whole lot I can do to strengthen my throat muscles because the problem is that my brain is not transmitting the proper signals to my muscles to make them work. My spine is going to continue to get more crooked, and there’s nothing I can do to fix it. So basically my pain will continue to get worse, my breathing will likely become compromised because of my lungs, and I won’t be able to swallow at all at some point. Whether I end up with pneumonia in my lungs that I can’t cough up or I choke on my own saliva, the doctors basically looked at me and said there was really nothing that could be done.
I am in the end stages of my disability, and I’m going to die. They didn’t give me an exact date or anything like that, but everyday feels like a struggle now. My life feels exhausting all the time; even just waking up in the morning feels like a daunting task. Knowing how much pain I am going to be facing is bad enough, but the fear and the anxiety and the depression that’s come on as a result can feel debilitating. No matter what awful things I’ve been through in the past, and I’ve been through a lot, I always felt like I wanted to get up and face the day. And now I don’t always feel that way. Most of the time I don’t. I dread it.
To be clear, I am not suicidal. But sometimes I don’t know whether I am more terrified of dying, which petrifies me, or living the life that I have now. I am not writing this for people to worry about me or feel sorry for me. I just wanted to share all of the crap that I’ve been going through and get it off my chest. I am hoping that by stating this as plainly as possible, it will help me face what is inevitably coming. I’m grieving right now. I am trying to reach acceptance.
I have no family in Boston. My parents are in Florida, and I need to go be near them now. They were here for a month with me, but they had to go back home to get things set up down there because I will be moving there sometime in the near future. I’m just trying to wait until I get my new wheelchair. The problem is that I cannot live in their house for a variety of reasons, so I will likely be living in some type of rehab/nursing home. And thinking about my future and how much worse it’s going to get also keeps me anxious, depressed, and sad. I’m just not safe by myself anymore.
I’ve lived on my own since I was 18, and I have no regrets. I love Boston. I love my independence. But I am scared, and I can’t do this by myself anymore. I need more specialized care than ever, and I don’t have the staff to do it. I love the people who take care of me. They are my friends and family here. But I need more help than a lot of them can give me now, and everyday I worry about whether or not somebody’s going to be able to come in. I was able to work through that before. But I am less capable now.
I also stress about having to teach a bunch of strangers who don’t know me how to take care of me, especially in a rehab type place. With all of my pain and anxiety and stress, trying to teach anybody new about my body and all its changes seems so much harder now. It’s hard in my own home, nevermind in a setting where I won’t have one-on-one care.
Thank you to everybody who has reached out to me since my hospitalization and who has sent love, thoughts, prayers, and support my way. I appreciate it more than you know. And I am trying to reclaim some sort of normalcy in my life. I am sorry I have not been around on social media or texting as much. The idea of explaining to everybody what’s happening to me is disheartening, so I kind of just wanted to do it all in one post.
I want you all to know that I have not given up, that despite the dark thoughts I often feel and the dark thoughts I have expressed here, I am trying to cope and live my life. I want to spend however much is left of it the best way I know how. But I have my good and bad days, and I will continue to have those. I love you guys. Thank you for being in my life, no matter what capacity you’re there in. Thank you for knowing me and loving me and being kind to me and being my friends and family. Thank you to the people I’ve met in person and the people I haven’t. I have friendships with people all over the world, some of whom I may never get to see in person, but you are no less meaningful to my life. Whether I talk to you every day or every couple of years, I appreciate it, and I appreciate you.
- Lisa
