Who am I? Who are you?
Most of the blogs I read are about diabetes, but there are a few others to which I regularly make the rounds. Among them is a blog written by the mother of a
boy man with Angelman Syndrome. If you’ve been following me for awhile, you know that my only brother has Angelman (or, to phrase it in a way I learned from that blog, “is an angel”).
And as a quick refresher on what this means, and I’ve blogged about it a few times before: my brother is 37 years old. He is unable to talk, read, or perform basic tasks (like getting dressed or using the bathroom) without assistance. He communicates by way of grunts, gestures, and facial expressions. He’s got the mind and behavior of a 2-year old but the strength of a grown man, and a hug can literally knock you to the ground. I watched my seven-year-old son pass him, intellectually, long ago, and my two-year-old is passing him in some ways now.
Anyway, this blog that I read ended with a link to a petition to the White House to increase funding for researching treatments and a cure for Angelman Syndrome. And that got me thinking. Not the treatment part (of which we could use all the help we can get, and hopefully put an end to the rotating cocktail of meds and side effects that he consistently uses), but the cure part. I asked myself, “do I want to see him cured?”
Daniel is innocent, and oblivious to why things are. He doesn’t know that he is disadvantaged compared to other people his age, he just knows that he has boundaries – some drawn by nature and some defined by his caretakers – and that’s the way it is. He doesn’t have the capacity to ask why.
Everybody loves him. Not just because he’s family and that “requires” us to do so, but because his exaggerated displays of affection and his simplicity charms us. Perhaps some of this is due to his personality, but a great deal of it is due to that altered chromosome which makes him the way he is.
I seriously doubt that there’s a way to “fix” the genetic DNA in every cell of a grown man’s body. But suspending belief for a moment — if he were cured, what would that mean? Who would he become?
He would be a man in his late 30s, with little to no recollection of his life to date, and a fraction of the knowledge he needs to be a contributing member of society. To say that he would need some hardcore and speedy education, Billy Madison-style, would be an understatement. However, he would suddenly recognize just how different he is from everyone else, and that would make him very sad. Though he’s been angry at not getting his way at times, he’s never truly and emotionally been sad before, and the thought of it is heartbreaking. Innocence is bliss.
Most definitely, if Daniel were cured, he would no longer be the same person. I don’t know who he would become or what he would do – or if it would be for the better.
But this isn’t a blog about Angelman, it’s about diabetes.
So I ask you this — if you (or your loved one[s]) were suddenly cured, who would you be? What would you do?
Would you have other mountains to climb? other demons to conquer? other goals to achieve? other ambitions?
Or would you feel lost — like the one true thing you care about – that you devote all of your time and energy towards – has been taken away from you?
This is all hypothetical, of course. But my point is this. This is my plea:
Don’t let diabetes consume you. Let it be a part of your life, and depending on your comfort-level of advocacy, it could be as big as you like. But make sure there’s something else. If diabetes is removed from the equation, make sure you – a person – still remain.
Don’t miss out.
I’ve struggled with this very question. Diabetes is all I’ve ever known. It’s what I build my advocacy efforts around because I don’t want anyone to feel as lost as I did for 20-something years. It’s also what caused me to want to be as healthy as possible.
If I were cured tomorrow, I’d feel an immense amount of joy but at the same time I’d be lost. I know it’s hard to imagine, but it’s what I’ve done for so long, I’m sure there will be a few months that will go by that I’d feel “awkward”. But, I’d eventually just shift focus and find the time to do more with my life and find another thing to advocate for.
..And possibly have the money to go to back school or get a new car… or at least take a nice vacation.