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 TuDiabetes.org member

How big is my diabetes?

Last week, I read the excerpt from her book Balancing Diabetes, titled “Siblings” that Kerri shared on her Six Until Me blog.

I don’t mean to take away from any other blogs or bloggers out there, but when I read this one, it was different – I absorbed the words of this post much more deeply than I take in most diabetes blog posts. I read with more intensity and found myself in more self-reflection than usual. (If you haven’t read it, I recommend you do).

Why was it so unlike anything else?

Because I couldn’t relate to it at all. Not one word of it. And it opened my eyes to things I had never seen and have never fully understood.

But before I get into the diabetes part of things, I was really captivated by the expressions that came directly from Kerri’s brother. Very much like his sister, Darrell has a real talent for painting a picture with his words, using phrases like “looking rather dour,” “memory … indelibly put on my mind,” and “everyday cumulative tightrope.” He finds the right words to bring the reader into his mind, looking straight through his eyes and feeling the energy of the moment. The writing talent in that family is truly extraordinary.

My brother, if you recall, is nothing like Kerri’s brother. He can’t talk at all. With his limited cognitive function due to Angelman Syndrome, Daniel can only live in the present; his ability to remember past events is minimal, and his ability to predict future events is nil. He is unable to express himself using words, resorting to grunts, groans, and gestures (sometimes aggressive ones) to express the most basic of emotion, and his behaviors are sudden and impulsive. Growing up in my family, Daniel was always the one who required the extra attention. Food was kept behind locked doors to keep him, not me, out.

Although there were only two of us, if someone were to play the famous (at the time) “one of these kids is not like the other” game, Daniel would unquestionably be the answer. And, since there were only two of us, that left (and still leaves) me without someone to talk with in a typical “sibling” type of relationship.

Bringing the topic back to diabetes, this is probably why I’ve often grown up with the understanding that my diabetes was mine, with all the rights, responsibilities, and privileges pertaining thereto.  Back in 2012, I wrote a blog post about it, titled “It’s mine, and I’m not sharing.”  I got quite a bit of heat from that post, likely because I didn’t acknowledge everything that my loved ones contributed to and sacrificed because of my diabetes.

Because I didn’t know.

In very recent history, there are two things which gave me insight into what may have gone on in my house as I was growing up, which I didn’t see. First, was the excerpt in Kerri’s book which I described above.

Second was a string of comments to a status-update I left on my Facebook page last month on the 34th anniversary of my diabetes diagnosis. The status itself was rather low-key (and included an image I’ve shared here before):

 

 

My memories of those early days with diabetes are filled with images and interations with a hospital bed, the school nurse, eat), the school nurse, urine tests, Life Savers, and  an inconvenient 10:00am snack.

This wasn’t the first time I’ve acknowledged the date on Facebook (I don’t do it every year), but it was the first time I saw a stream of responses like this.

• My cousin, a few years older than me, wrote: “You were still so sick at my Bat Mitzvah. I remember you sitting/leaning on Grandpa.“
• A friend, a couple months older than me and who I’ve known since before I learned to talk, wrote: “Ugh I remember when you got sick [sad-face emoticon]“
• My aunt, who in  age is just a half a generation older than me, wrote “One thing I remember about when you were in the hospital that time, besides everyone being very upset and crying, is that you played with the controls on your bed until they broke.“

I never EVER thought other people remembered me looking or being “sick.” I don’t remember feeling it myself (though I did miss some school), and I’m shocked that another then-seven-year-old remembers it more distinctly than I do. Any my cousin’s Bat Mitzvah was still a few years later, so the impressions (and apparently, my own efforts to stabilize) went well beyond the time immediately following diagnosis.

More importantly, I don’t ever recall seeing any hint of worry or sadness on my parents’ faces because of diabetes, and I certainly didn’t see them cry. In fact, it wasn’t until five years later (in a completely unrelated circumstance) that I learned how they looked when feeling scared and helpless. Even though my brother’s obvious (yet undiagnosed) developmental issues and my diabetes had already given the one-two punch, my parents approached both challenges – from my vantage point – with strength and unwavering confidence. I’ll bet this is why my attitude towards diabetes is similar to that of my parents: strong and determined (two traits which, by the way, peacefully co-exist with sheltered an naïve).

Any recollections of sickness, fear, or reactions of others (other than my classmates’ jealousy over my 10:00am snack) from that time are non-existent.

I posted a comment stating my surprise to the response I’d been reading, including the words “I don’t remember anybody crying“.

To which my aunt responded with something so predictably obvious, yet so profound that it deserves to be put in italicized-boldface type: “of course you wouldn’t. No one ever cries in front of the children.”  Whether parents should cry in front of their children is not something I’m suited to answer right now, but I am absolutely certain that it can affect the child’s life-path decades later.

Until the thirty-fourth anniversary of my diagnosis, I never had a clue how my diabetes affected others. Or, to repurpose Darrell’s words, how memories of my own diabetes experiences were indelibly put on the minds of those around me. Nobody told me. Nobody showed me.

I never had a clue.

This, I suppose, is why I wrote that post back in December of 2012.

Though I knew everybody has some sort of obstacle to deal with — some interfering demon that gets in their way of living a perfect life — I believed my whacked-out immune system was my demon and it was up to me and me alone to own it and control it. That’s how I’ve lived my life for thirty-four years — acting in my very own sheltered existence where diabetes doesn’t come in and diabetes doesn’t get out. Oftentimes, I still default to that way of thinking — I find comfort and righteousness in keeping it to myself. It’s the whole “do unto others…” thing. I’m reluctant to “do” diabetes to anyone else, just as I prefer it hadn’t been done to me.  The rational conclusion is that sheltering others from my diabetes works out best for the both of us.

The idea that my diabetes can penetrate through my shelter walls and affect people on the other side is still very awkward and confusing to me, and I’m trying hard to comprehend it. Kerri’s post helps me learn what to expect if I crack open the door and peek outside.

 

 

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?”

It’s not fair

I can’t help myself. My mind can’t escape what I read in Christina’s blog post a few hours ago.

A third child diagnosed, none of the parents showing any evidence of carrying diabetes. I’m just sitting here, shaking my head, and wondering why – why do some families get hit once, twice, or thrice, while others don’t get hit at all? I want to tell Christina and her family how I’ve shared in her fears, and how I now share in her tears. I want them to know how – as a parent – their new reality brings about an emotion deep inside my chest that I just can’t put into words. I know diabetes is something that’s manageable, but it’s something that nobody wants to manage. Especially more than once.

But I’m not here to capitalize on her family’s streak of luck in order to earn page views on my own blog. That would be heartless and wrong.

Diabetes: My earliest memories

This is how I remember the time of my diagnosis. To a seven year old, memory is selective, and most of what I selected to remember – surprisingly – does not involve diabetes (family members and medical records filled in what I missed later).  To a 38 (almost 39) year-old, memory gets hazy, so this is my attempt to write down my diagnosis memoirs before I forget anymore.

* * *

I had been home from school for quite some time. I’d been itching like crazy from the chicken pox. My parents would slather cream on my sores like one would schmear cream cheese on a bagel.

They brought my brother to the doctor who gave him some a shot to give him chicken pox as well, but in a much more mild outbreak. At four and a half years old, he hadn’t yet been given the diagnosis of Angelman Syndrome, but there was definitely something wrong with his brain, his motor skills, and his development. Everyone knew that – if he got it as severe as I did – that it would be worse than unbearable. So in the absence of a vaccine (which, apparently, they now have these days – medical breakthroughs do exist!), they gave him this. He seemed to do alright from what I remember.