Deb Brandon: Living in Radiant Color


“Survey: what effect from a bleed has impacted your life the most? Eg: facial droop, anxiety….” I didn’t even know where to start. But on second thought, I didn’t know whether I truly had anything to contribute.
I follow a closed group on Facebook named “Stemmies.” It’s a support group for those of us affected by brain-stem Cavernous Angiomas. My second brain surgery was to remove an angioma in my brain stem that had bled.
I’ve never categorized my deficits from the three surgeries separately. The, now rare, tremors, the excruciating headaches, sensitivity to sensory input, lousy balance, my occasional difficulties swallowing and breathing, my memory issues, epilepsy, excessive fatigue, and ADD. I’m sure that the balance, breathing, and swallowing come from the brain stem, possibly the tremors as well, the seizures probably from the angioma in the right parietal lobe. But the rest, who knows. Maybe all three surgeries contributed to those. Ultimately, it doesn’t matter which came from which, and quite frankly I’m not that interested in the matter.
However, I do find the question asked on the Stemmies page on Facebook intriguing. It made me think about my life during acute recovery and my life now, how far I’ve come.
Which effect did impact me the most? The seizures were one of the main reasons I opted to undergo surgery. But now, they are well managed by medication. My difficulties breathing really haven’t been much of an issue, and given that I suffer from asthma…
Once upon a time, in a land faraway. photo by Amir Auerbach. Once upon a time, in a land faraway. photo by Amir Auerbach.
My issues with my memory are much better now. Yes, they occasionally still cause some “interesting” situations, but mostly, the effects are entertaining, at times hilarious. The tremors and truly rare. The ADD-type issues certainly aren’t at the level that I would need meds. My balance has improved over the years. When was the last time it was really bad?
On the other hand, my difficulties processing sensory input are very much there.
A couple of days ago, while shopping at Whole Foods, I had trouble moving and started tearing up. I probably looked like a total nutcase as I stood frozen, leaning heavily on my cart. On the one hand, I hoped that someone would come to help me get out of there, on the other, I knew that if someone did ask me if I was all right, I would break down sobbing which is one of my favorite activities, especially in public.
I usually manage to avoid bad situations. I don’t attend sporting events and if at all possible, I shop when the stores are relatively empty. I try to avoid overly crowded and noisy restaurants, and when I do eat out I choose a seat that faces lower traffic areas. When I go grocery shopping, I restrict myself to two or three aisles.
My sensory overload issues have had a major effect on my life, but it’s become and integral part of it. Most of the time I don’t even realize that I’m incorporating avoidance strategies and coping mechanisms into my daily life.
The headaches. Many are crippling. They force me to rest completely. No work, no reading, no writing, no talking, nothing, just a world, a universe, that is pain.
And fatigue, the root of all evil. After the brain bleeds, fatigue has been my nemesis. I tire very easily, anything that requires brain power drains me of energy—reading, writing, teaching, talking, listening. Everything. It’s always there, to varying degrees. If I don’t get sufficient rest it can become all consuming. Sometimes it creeps up on me, other times it strikes suddenly with little to no warning.
Fatigue restricts me from accomplishing more than two tasks a day, prevents me from attending sporting events and meetings. It limits my ability to join in on social activities. It causes vertigo and trouble with my balance. It can lead to tremors. It messes up my memory and shortens my attention span. It’s also the root cause of my excruciating headaches. Fatigue aggravates all the other effects.
I have my answer to the Stemmies surveys—fatigue affects me the most.