Angelman, diabetes, and self-worth

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 member

My reply to this person appears below.  I don’t know if inspired the original poster, but I hope it may inspire you.  At the very least, I hope it helps you better understand AS.

My only brother is severely mentally disabled. He’s 35 years old and has the overall abilities of a 3 year old. He doesn’t speak or read, can’t comprehend complex directions, doesn’t dress himself, rarely uses the bathroom himself (and has his share of accidents), and has a mild seizure disorder. He is very uncoordinated and often breaks things, either by accident or as a simple result of childish behavior. He communicates by grunts, hand gestures, facial expressions, laughs and cries. He sometimes eats things that are toxic, and has had multiple stomach surgeries. He lives in a residence for adults like him, at a cost shared by my parents and the state. He requires constant supervision. By any dictionary definition, he is indeed a “burden”.

My only brother is the most emotional person I know. He expresses joy in the most jubilant way possible, laughing and pulling people together in group hugs. He appreciates the simple things in life: a funny slapstick moment on TV, a dog licking his hand, a visit from his brother. His smile makes everybody around him smile, his laugh makes everyone else laugh. He has a very endearing personality. When something upsets him, the rest of us feel bad because he can’t comprehend what just happened or why. My life can be so stressful, yet I’ve learned to essentially live vicariously through him and simply enjoy the moments through the eyes of someone who doesn’t comprehend anything more.

I don’t know why Daniel is the way he is, but I do know that he is the reason so many other people are the way we are. We are a bit more sympathetic to those who can’t help themselves, a bit more appreciative of the good things around us, a bit more tolerant of those who are less able.

When I was younger, I dreamed of the day when he could somehow be “normal” and I could have a sibling to talk to and play with like all of my other friends did. Today, I know that won’t happen, but I couldn’t imagine Daniel being anyone other than who he is, He has meant so much to me, to my parents, my grandparents, my aunts and uncles, and my cousins, and has shaped our lives and beliefs for the better. Is he difficult to handle? Of course. Would I be absolutely devastated if something happened to him? Absolutely.

My point is this: in our day-to-day lives, we tend to only look at our day-to-day needs – what we ask of ourselves and what we ask of others. We tend to lose sight of the larger picture, how important we are to others and how we, unknowingly, help others. But people need us, rely on us, love us. I’ve been diabetic for 30 years, and I’ve sometimes felt like the “burden” you speak of. But I’ve seen the other side as well, with my brother. People don’t necessarily contribute to society by the inventions they create or the money they raise. The most important contributions can be simply by the interactions we have with others, and the lessons and thoughts that those other people walk away with.

It took a lot of courage for you to write this post, and your four sentences are more powerful than my long ramblings of meandering thoughts. But I hope it helps you to believe that you are not a burden, and you are not a useless waste of space. Unless you are a pure evil-doer (which I’m sure you’re not, those types have reached international infamy), you mean something to somebody. Your living with diabetes has inspired somebody. Your expressions of guilt have come as companionship to someone else who feels the same way, and feels alone. You’ve been open and honest, and inspired others to be the same.

We need you here. Please understand this.

For more information on Angleman Syndrome, please read the topic’s Wikipedia page, or visit the Angelman Syndrome Foundation website.

Posted on June 28, 2012, in Diabetes, DOC, Inspiration, Personal, Support and tagged , . Bookmark the permalink. 9 Comments.

  1. What an incredibly powerful response, Scott. Thank you SO VERY MUCH for writing this, and offering your insight based on your own family experiences. Such a personal topic and I appreciate you sharing that with us. I felt it really touch my heart, and think you’re absolutely spot on about just the human interactions contributing so much to our world. I couldn’t agree more – every single person contributes something that we are all better off for, even if we can’t see it or understand at the time or moment. Stepping back and realizing that is so important – no, necessary. This is one of the best posts I’ve read in awhile… thank you for this, my friend.


  2. Many many years ago, I added a “signature line” to my personal email account, and it’s still there to this day. I’m not even sure where i first heard it but it always stuck with me. “To the world you may be one person. But to one person, you may be the world.” I think that applies here, too. Very well said, Scott. 🙂


  3. For years I wanted to know why I had diabetes. Why I was the only one around. I didn’t think anyone ever saw the struggle I went through, and I felt like nothing but a big burden on everyone around me. It changed somewhat when I met the DOC. I knew I had a purpose in helping people, but how or in what fashion, I still wasn’t sure. I still didn’t know if I even mattered to people. That all changed last month when my cousin was diagnosed. Since then, I’ve been able to help and support them. Her dad has told me numerous times how he watched me all through the years and was amazed at how I could juggle all that I did and not lose my sanity.
    We’re all pieces of a HUGE puzzle that we can’t see. Even the Bible speaks of Jesus and his flock. He has 99 sheep, but He left them to find that one that got lost. Every person matters. Sick, handicapped, diseased, or whatever, we ALL matter. The disease is the burden, not the person. And it’s the love of the person that overcomes the burden.


  4. I love this (typed with tears streaming down my cheeks). Beautifully expressed.


  5. Hi Scott, I have an adult son with Angelman Syndrome named Scotty and you described him perfectly. And you are right, everyone’s life is important in some unique way most especially those like your brother and my son. Thank you, this was beautiful


    • Joanne, thank you SO MUCH for reading and commenting here! I’m not sure what brought you to a diabetes blog, but you’re the first person I’ve been in touch with who also knows Angelman so intimately. As I read your blog, I keep wanting to comment on every little bit of it, and once I’ve collected my thoughts, I surely will write something over there. But from what I’ve read so far about your family, Scotty sure has good reason to be happy!


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