What’s it like, living with a rare disease?
It’s a question many people ask – maybe not verbally, but I can tell it’s on their mind:
What’s it like living with a rare, incurable, progressive, debilitating, terminal disease?
And I really pray that whoever is wondering can never answer it themselves.
However, honestly, neither can I.
And I know that’s a bullshit response, but the thing is, I’ve never known another way of living. I don’t know adult life without ataxia, so I have nothing to compare it to.
Which, in a way, I think, makes life easier, because I’ve just accepted it? It is what it is, right?
I hear A LOT (Side note: “A lot” is two words. “Alot” is not a word. You wouldn’t write “Alittle.” And “allot” has another meaning entirely.) of “You’re just so positive all the time!”
Well, yeah? I’m always genuinely confused about this comment.
Do people expect me to be miserable all the time? Is that how I’m supposed to act?
Don’t get me wrong – I have my woe is me, pity party moments … in the privacy of my home, with my husband who knows whether to comfort me or just tell me to suck it up.
But why be sad all the time? What’s the point in living like that?
Ataxia is one part of my life; being upset about it sure isn’t going to make it better. If my life is already difficult, why would I emphasize that?
A couple of years ago, a friend said to me, “I don’t know how you do it. There would be days I wouldn’t even want to get out of bed.” And honestly, until that very moment, I didn’t know that was an option. Oh, because it’s not.
On the other end of the spectrum, there are people who strongly believe that since I’m living with a terminal illness I should spend every waking moment fighting it.
Not only should I work out all the time and adopt a gluten-free diet and take certain vitamins and avoid alcohol and hire a personal trainer and see my neurologist on a weekly basis and take vocal lessons and partake in clinical trials BUT I should also live life to the fullest!
How have I not published a book and swam with manatees and been to Alaska and all the other things on my bucket list if I know I have a shorter-than-average lifespan?
I mean, if you knew you were going to die someday, what would you do?
As my disease progresses, I obviously think about it more and more… because I have to – I have to figure out a new way to do things, or I risk not being able to do them anymore.
But I try not to think about it as much as possible. I don’t ignore it, I know it’s there, but I don’t let it consume me.
In a scene from Love & Other Drugs (an underrated, powerful movie that deserves its own post), an early-onset-Parkinson’s-diagnosed Anne Hathaway says, “Parkinson’s isn’t my life, I have Parkinson’s. Why can’t I just live my life…?” She says it hurriedly, in the middle of a fight with Jake Gyllenhaal, and I’m sure most viewers don’t give it a second thought.
But I think about it constantly, because I really couldn’t agree more.
Love this and your way of looking at it! You are so right! Good for you Meg! Have your cry when you need it, then get right back to living your best life with your best friend! Thank you again for letting us in a little bit😘❤️🙏🏻
What a wise young woman you are! I just discovered your site and absolutely love your insight and ideas. I am about 50 years older than you, but you have such a better approach to ataxia than I do. After 5 years of diagnosis, I have (almost) left denial behind and have become much more accepting of myself. However, you have reached a better place than I have and the truth you speak will make me get there faster. Reading your posts have already improved my attitude. Thank you!
You amaze and inspire me…A LOT. Thanks for sharing yourself with us.