ioma

I had every intention of writing more this month. I wanted to write about my TennCare escapades, issues regarding age discrimination in people with disabilities, and lots of other things. I still intend to, but the truth is, I’ve been too distracted to get it done. My mind has been on only one thing: my brother’s upcoming surgery.

My brother, Isaiah, will be having surgery on December 26th. He will undergo a laparoscopic surgery to correct an intestinal stricture (narrowing) and fistula (erroneous connection between two parts of the bowel), as well as an appendectomy (because they will already be removing that part of the bowel). These defects are the result of Crohn’s disease, which he was diagnosed with a few weeks ago.

He had a colonoscopy for Thanksgiving. He’s having surgery for Christmas.

When he was born, my main concern was for his eyes. My eyes were malformed at birth, and we still don’t have a definitive answer as to why. I didn’t let myself think about what would happen if he had a more serious problem, especially after receiving my EDS diagnosis when I was 20 and he was 4.

I can’t speak fully for him, but I do know that we had some hiccups with his health while he was growing up. A slipped wrist (or elbow?) here, allergies and asthma there. Some weird skin problems. He’s stoic, so we kind of just let things go.

Over the past few years, he has had trouble keeping weight on. He has also been anemic for quite a while. We went to his doctor here in Tennessee, who brushed it off as a growth spurt. We were told he would “even out” and that some people are just very thin. If I had a dime for every time this family has been told something would “regulate” or “even out” when that wasn’t the case, I would be rich enough to buy my own medical center. I have no idea how long ago his stomach pain started; as I said, he’s stoic and doesn’t mention things until they get very bothersome.

His doctors up at Yale took him seriously right away, thank goodness. They got him scheduled for an MRI and colonoscopy, among many, many other tests. A buttload (heh) of testing and a specialist consultation have determined that he has Crohn’s disease and the structural abnormalities need to be corrected surgically.

On top of that, both my geneticist and his doctors agree that he probably has EDS as well. He’s still waiting on a referral to genetics.

These are things he’ll have to deal with for the rest of his life. Crohn’s can be put into remission, but that’s not the same as a cure. EDS is not curable yet.

I have such mixed feelings about this. Of course, I hate that he has to deal with any kind of chronic illness. On the other hand, I’m glad I can help him navigate this new part of his life.

He has an excellent surgeon, and he’s happy with his life otherwise and is eager to get past this. He has every reason to do well. I’m still nervous as hell. I’ve been dealing with it by looking at things logically and imagining myself telling everyone that his surgery went perfectly and he’s recovering faster than everyone expected.

If you’re the praying/sending good vibes type, please send lots of good stuff his way. I will try to keep everyone updated as much as I can.

I started my first blog in 2001 at the age of 17, half a lifetime ago. I wrote about what any other teenage girl would write about: school, my first job, family drama, fun plans with my friends, and what I wanted to be when I grew up (I still haven’t figured that out yet!). The whole idea of putting your life online for everyone to see was still new and exciting, and I loved it. On my blog, I took center stage. I was interesting, unique, and funny. Maybe I would even write something that would resonate with someone enough to make a difference in their life! Not only that, I learned much of what I know about web and graphic design from making new blog layouts. Hammering out the dents in a new layout while listening to the radio in the middle of the night are some of my fondest memories.

One of my first posts – lost not to the ages, but to my carelessness in accidentally deleting it – was about a Halloween bonfire that my mom and I had. We invited our neighbor, Lance, which only served to reinforce his parents’ belief that I was a Bad Influence. My brother, Isaiah, was a year old at the time, and probably asleep rather than worshipping Satan with the rest of us. The night was warm and humid, balmy enough for the blue floral summer dress I was wearing. We weren’t sure if we would be able to get the fire started without the use of hazardous chemicals, but we prevailed! The night was filled with ghost stories and sugary snacks. As the fire burned down, the flames morphed into the faces of fairies, goblins, and the ghosts from our stories. Smoke and embers swirled into the sky and out of sight. Now that I think about it, I do remember Isaiah on our mom’s hip, watching wide-eyed and mesmerized as the fire crackled. I went to bed buzzing, a gentle tingle thrumming throughout my body, lulling me to sleep.

My blog entry at the time went something like, “We had a bonfire. It was pretty fun!” There is no way I could have known how significant this memory would turn out to be.

This memory is one of the few that, no matter how hard I try, I cannot conjure up any thoughts of my illness. I don’t remember any pain. I scarfed down the Rice Krispy treats and soda with no thought toward nausea or how destroyed my stomach would be later. It is a purely happy memory with no ominous signs of the struggles to come.

Over the years, my blog would shift from the melodramatic worries of a teenager, to inklings of something amiss in my early adulthood (that actually started in childhood, but were forgotten thanks to denial and poverty), and on to hospitalizations and diagnoses in my mid-twenties and beyond.

It has been at least five years since I have maintained a blog, preferring instead to keep my family and friends updated through other forms of social media. I frequently thought about starting to blog again, craving the depth and sense of accomplishment that writing provides. Every time I would falter, not knowing in which direction my blog – or my life – would go.

Just as my 17-year-old self could never have predicted what was to come, I cannot foresee what my future holds, and that’s okay. For now, I will allow myself to rekindle my love for blogging, one day at a time.