This Young Disabled Life
The word “disabled” is a scary thing to me; I even occasionally shudder when I type it. As I write this, I’m 42 and classified as disabled. I have been since my late 30s when my multiple sclerosis progressed to the point that I could no longer work. When I was diagnosed nearly 20 years ago, I in no way expected to be pulled from the prime of my life and be in this position. Despite having a grandfather who succumbed to this same disease and was in pretty rough shape for much of it, I still never thought I’d be in my early 40s, unable to provide for myself. There are others like me, and maybe this article is for them, but maybe this is one of those rare self-serving stories, too. My life is not everyone's with MS (in fact, fewer and fewer will be like me going forward), but it is certainly some (and not only MS but any type of condition that makes a young person disabled). So anyway, here are some of my rambling thoughts about my young disabled life.
*Some of this may seem sad, please don’t let it be, that isn’t my intention. This is all said in a rather matter-of-fact voice from me.
It’s hard to think that I am “disabled”. If you saw me at my best, you might see me at a bar, having a few drinks and talking with friends. Yep, even laughing. Despite what many people think, you can be disabled and have decent moments. I’m not disabled because I can’t occasionally do things, I’m disabled because I can’t do things consistently. I cannot rely on my body to work, therefore I can’t be relied upon.
I'm not reliable
I may look fine on the outside and when people see me out, but I also cancel about 90% of the things I plan to do, often last minute, because my body or mind simply won’t work. Disability is really more about reliability than capability. So while I hate the term “disabled”, I also know that it is warranted.
There are good times, but...
You can pull yourself together and try to enjoy yourself for a brief time. I now cherish those times, they happen maybe once a week (if I’m having a “good” week), when I can leave my house. I enjoy myself and might even look good doing it, but I will pay for it. Often heavily. I call this the “MS Tax”, and like the government, my disease ALWAYS gets its tax. For me, this tax typically involves not being able to use my legs real well, being extremely fatigued, and being riddled with burning pain. The more I do, the more I pay, and the less chance there is that I get out next week. There are times when the tax doesn’t seem worth it, which leads to me not even trying, which then leads to some terrible isolation and loneliness.
Perhaps the worst part of being young (-ish) and disabled is that I feel like I have no purpose. I have days where I quite literally feel like a waste of space, like a drain on society. I spent my whole early life preparing for a career, only to be yanked from it when I was in my prime. Not working and feeling like I have no reason to exist is a huge issue for me and has led to depression and even suicidal thoughts. Just yesterday, I woke up and felt physically OK (relatively speaking, my “OK” is probably not your “OK”). I had nothing to really do, but instead of actually enjoying that day of not feeling awful, I became overwhelmed with guilt.
Mentally, I was in shambles
I didn’t feel physically awful, but mentally, I was in shambles. How can this be my life? With nothing to do, with no purpose? Particularly if you are living on a bare minimum amount of money from disability and have a body that doesn’t work a lot of the time. You can’t really work but because of that, you can’t really do much else either. I’m not trying to be a downer, but it’s a crappy existence.
Love and dating
I always think one of the problems I have with a purpose is because I’m single with no kids. I look at other disabled folks who are married and/or have kids and think, wow, they really have something going for them. I know that can present other issues, but to me, I’m extremely jealous. I feel like you have a reason to keep going on if you have those things. They’re reasons to keep fighting. I keep going for my dog, who is on the older side. When he goes, I’m not so sure I want to keep going (and yes, I am actively in therapy dealing with all this, so no worries, I’m just being brutally honest, because that’s who I am).
Dating with a disability is incredibly difficult
So, it’s me and my dog. I feel a bit too old to have kids of my own, particularly when, just being honest again, my disease will eventually progress. Not that kids of my own are even an option because dating while disabled is also incredibly difficult. How is a man in his early 40s supposed to date when he can’t even drive and also has to cancel plans at the last minute a lot? I’ve essentially given up on all that, open to it sure, but I’m also realistic.
When discussing my everyday life, it again comes back to reliability, consistency, and payback. Those three aspects are always conspiring against me. When my brain isn’t completely messed up from cog fog, I try to write about and talk to others with MS. I try to care for my dog. I’ll work on a LEGO set if I am feeling really decent. Try my best to handle common activities like feed myself and my dog, laundry, or whatever. Many times, I even need my roommate to help with those activities, depending on the day.
Focusing on survival
I sort of live every week in anticipation of the one or two times I get out of the house to hang with friends (I wish/hope they know how important that is to me, even just having one beer at happy hour, how it’s the true highlight of my week). Honestly, most days I’m not even sure where the day goes. Not only does time fly, I have moments where I get confused and forget things. I guess to summarize, much of my daily life is focused on simple survival, my dog, and thinking about the moment I’ll get out of the house that week and many times, I still need help with all of that.
Being disabled is extremely lonely. I’d say it’s more so because of being young, but I don’t believe that at all. It’s lonely no matter what the age. It gets to the point that I have trouble dealing with people when I do get out of the house, because I’m just not around them much. I still crave being around people though. When I get out to see friends, I often pick a bar because I know there will be others around. Even with some sensory issues, I still want to see and hear other human beings.
Separation anxiety when I'm away from my dog
I have my dog, and he’s great, but it’s not the same. Oh, and to add another little wrinkle to all of this, because I spend most of my time with just my dog, there is now an attachment there, such that I’ve developed extreme anxiety when I do leave him (again, dealing with that in therapy, too). So much so that I have had moments where I’ve gotten out and then immediately gotten a ride home because I couldn’t handle being without him. If you’ve ever seen the movie Castaway, my relationship with my dog is very much like Tom Hanks’ with Wilson the volleyball.
I’m sure you can understand that social media is both a blessing and a curse for someone like me. On one hand, it allows me to still take part in the world some, it allows me to communicate with people, even ones just like me. It can also be pretty depressing, seeing what everyone else is up to, making you long to be where they are. I’d say folks in my position have a roller coaster of emotions more frequently than most. I admit it, I get jealous sometimes.
Growing apart from friends
I also admit I’ve stopped talking to some friends from my past, not only because I’m jealous that they are living the life I thought I would be, but also because I simply have much less in common with them now. Going to work, having a family, going on vacations. I’m now very far removed from all of that, and not only is it tough to see, it’s also hard to talk about and hear about. Former friends now have lives that I can’t even comprehend anymore. Being young and disabled has made me grow apart from friends more quickly than I expected.
I’m sure this whole thing has been a downer to some, so let me find some good things to talk about. Most of what I’ve talked about is kind of matter-of-fact for me at this point. Even with all this, I still routinely say that I know I have a good life, one far better than most. I wholeheartedly believe that, too. It hasn’t gone the way I thought it would, but I’ve been living it long enough that I don’t consider it bad. I have tremendous friends and I have found some things that I am passionate about. It isn’t always an easy life, but whose life is? I truly don’t mean all of this as negative as it may sound.
Finding gratitude in the smallest things
Those moments I get out with friends, I truly cherish and appreciate those, it makes paying that MS Tax worth it to me. I guess when you are in my position, you learn to find appreciation and enjoyment in some of the smallest of things. So in some ways, this life may be even more rewarding than if I weren’t disabled. So please, this isn’t all doom and gloom.
An important note
Not everyone who gets MS will end up like me, despite what some people like to say. Science has made some amazing breakthroughs since I’ve been diagnosed. Most are too late for me, but the next generation of people with MS will be in a great position. After seeing the difference not only over my 20 years of being diagnosed, but also my grandfather’s life before me, I can honestly say that these efforts are paying off. All that time raising awareness, all those MS walks, all of that has helped science make tremendous advances. It’s easy to lose sight of that. There is no cure, but we are further along than we’ve ever been and that because of everyone who ever raised awareness by sharing an article or donating or participating in an MS Walk or Bike Swim or Readathon, and I thank you for that.
Do you have a fear of needles and take medication that requires injection?