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?”
Recently, I’ve made a few references to my brother, who has Angelman Syndrome. He is a full-grown adult but is incapable of the most mundane of tasks. But most of the time he is happy, for he is not capable of understanding that he has certain limitations (or so we believe). He will never understand what a teacher he’s been to myself and my whole whole family, but his mere presence is an inspiration – a lesson on priorities and what is so important in life. I’ve been meaning to write a bit more about him in a context that is relevant to this blog. This thought process keeps keeps taking me back to something I wrote earlier.
Last year, a member of TuDiabetes (whose name I will not include in this post) posted a message titled “Guilt.” This short but powerful message really struck a chord with me, and still resonates in my head to this day:
I feel guilty that I am alive and continue to be a burden to the people I love. They all deserve so much better.
I truly believe the world would be a better place without me.
Diabetes and all the side effects render me a useless waste of space.
–A TuDiabetes.org member