A few weeks ago, I became the last of the adult kids in the house. And now it’s just me and my parents. Just me, the disabled and sick 26 year-old, and my parents, whose almost-retirement years I can’t help but feel guilty for fifth-wheeling sometimes.
My friends are getting married and having babies. My friends are working jobs full-time, some of which are dream jobs and some of which they hate. My friends can do “normal” things, like maintain their own apartments, go to the store, and go on hikes in their free time. And then there’s me. I live with family and haven’t been able to go on a proper walk in over two years. I just lost an entire week of work because I was in another ME crash that left me too sick and weak to sit up. I might like to find a partner someday, but if I’m honest, I worry no one will want me if I stay this sick.
Every time I have a bad ME crash, all of my worst fears about my future and deepest insecurities about the present come rushing back. In the hours when I’m in pain all over my body, completely exhausted, and hooked up to an IV, I start to think maybe this is all my life will ever be. I forget everything I’ve accomplished and everything I am apart from my illness––and I am so many things besides sick.
As a perfectionist and over-achiever, it has taken me a long time, but I’ve finally truly internalized that my worth as a person isn’t tied up in my productivity or my accomplishments. My worth (and everyone’s worth) is inherent. You and I are valuable and important just for existing. You never know what seemingly small thing you might have said or done that made a huge impact on someone at just the right moment. You never know whose life you might have saved or changed for the better. But you also have permission to simply exist without having to justify it through impact.
This line of thinking has been essential for me in the last two years since becoming physically disabled. I have had to learn and re-learn that I’m not any lesser just because I sometimes have to take time off from being productive. And there’s nothing wrong with the fact I sometimes need others’ help to do “simple things” that others take for granted. We all depend on each other for one reason or another. As a disabled person, I just happen to be more aware of it.
Yet for many of us, existing isn’t enough. We have goals and dreams.
Before my PANS got bad seven years ago, I sure had a great plan for getting to the top of my field. I thought I had everything figured out. But when your brain gets attacked by your immune system, everything changes for a bit. I had to completely rebuild myself each time I relapsed (three or four times in all), yet I somehow landed on my feet each time.
But then came the Myalgic E, inconveniently forcing me to leave graduate school halfway through a master’s degree. Plans ruined, yet again. What would I be able to do without a graduate degree?
In the last couple of years since I left graduate school, I’ve been freelancing. And honestly, I’m happier than I was in academia. Once again, I’ve landed exactly where I needed to be. Nevertheless, I’ve had to turn down quite a few jobs and opportunities on account of my disability during this time. I’m to a point I accept my limitations rather than fighting them. There are things I simply can’t do because the cost to my health would be too great.
But I’m going to let you in on a little secret: you can both say no to things that aren’t possible for you and say, “F– it! I’ll find my own way to do X.”
And that, in essence, has been my survival tactic ever since I first got sick when I was eleven. And it is what I choose to live by every day now, and every time I start feeling like my unconventional life is somehow inferior.
No, I can’t work a normal job… But I’ve found lots of joy and opportunity freelancing instead. No, I can’t hike or really do any kind of physical activity, but it makes me all the more invested in everything else I can do. No, I haven’t fallen in love, but I’ve enjoyed investing myself in friendships and family relationships instead.
It’s not going to be easy, but the sooner you learn to open yourself to what is rather than what could have been, the sooner you can live in the moment and start making the most of it. And yes, you are absolutely allowed to grieve the things you’ve lost. I still grieve, especially when my symptoms are flaring. But I’ve also been able to pick up the pieces of shattered plans and make something new and maybe even better. There is no single door of opportunity that can close that’s your only key to success––there are many kinds of success, and many ways of getting there.
I don’t have the kind of life I may have once thought… But just because it looks a little different doesn’t mean it’s worse than what could have been. A difference in expectations versus reality doesn’t equal a difference in happiness or impact. It’s simply a difference. No one has to live your life but you, so why give a rip about how other people are living? You do you.
3 thoughts on “Expectations vs. Reality: Why “Different” Doesn’t Mean Worse”
This is a lovely post. You are definitely more than your illness. We can only live as best we can with what we have and that’s what you’re doing.
“You do you” I love it! Excellent article, full of motivation for any reader regardless of his/her situation.
Thank you so much for sharing this. I know so many people with disabilities will be able to relate. That every person is inherently valuable, aside from the things they produce. And yet, you do want to make an impact. And you ARE making an impact. 🙂