I’ve Arrived Down The Road. Thank You For Being There For Me.
Tuesday November 05th 2013, 9:57 am
Filed under: Family, Friends, Health (Not Cancer), Leukemia

This year has been a struggle. I lost a beloved cousin and her mother, my aunt. I lost a close confidant to suicide.

I spent so much of the year waiting for the thing that would help me. Waiting for the day and the person that would make me better, that would finally fix me. Appointments scheduled distant months away, only to prove fruitless when I’d arrive. Small steps forward threatened by new, complicated issues wanting to push me all the way back down the mountain.

Since the summer, I have struggled with violent and painful hallucinations that I can only feel, but cannot see. Whenever and wherever I try to sleep, I experience sensations of my limbs sawed off, my torso stabbed with knives, and my skin pierced with hundreds of burning needles. I am held by dozens of hands and I am molested by my own brain.

I have also developed vertigo and the tremors I earned from chemo have worsened considerably. Many of my doctors believe these things are all due to tiny seizures in my brain; so tiny that they don’t cause physical convulsions. Instead, they shake up my central nervous system just enough to cause me to feel that I cannot trust any of my senses.

When I had leukemia, there was evidence that some leukemic cells might hiding in my cerebrospinal fluid, the liquid that surrounds my brain and spine. I received radiation treatment to my brain and chemotherapy drugs injected into my skull in such a way that it splashed directly onto my brain and then stayed contained, killing things in the waters my brain and spine soak in. This particular chemotherapy drug was so toxic that one hemisphere of my brain bears a chemical burn that can be seen in MRIs and other advanced imaging.

Believe it or not, I’m not complaining. All of those things were part of a grand plan to save my life. Here I am: I am alive. All of those toxins and all of that radiation worked. They obliterated my cancer.

Unfortunately, though, as a result of the radiation and the toxic chemotherapy, my brain and spine are not as healthy as they once were. I was warned of possible side effects before I began receiving radiation. Hallucinations, vertigo, and tremors were all things I might experience “down the road.”

It seems I’ve arrived down the road.

I’ve had many tests run over the past months, but to diagnose the exact mechanism in my brain that’s causing these problems, I need to go into the hospital as an inpatient so that epileptologists (seizure experts) can study my brainwaves over the course of five days. There will be wires superglued to my head the entire time I’m there (checkout the bottom of my last entry for a picture of the wires I’ll be stylin’), and while I’ll be able to move about my room, I won’t be able to leave it. I’m hoping that the epileptologists will be able to gather all the information they need from this hospital stay.

It’s been a few years since I’ve been an inpatient at a hospital. Being an inpatient is very boring, which again, is not a complaint, just the fact of the matter. If you’re ever going to stay in a hospital for even a day, make sure to bring something to entertain yourself for more hours than you expect to be there. When I told my friend Jason that I was going in for this hospital visit, he told me to make sure to load up my iPad with lots of comics to read. When I responded that I don’t own an iPad, he was aghast to learn that I’d been reading comic books on my iPhone.

“How is that possible?” he asked.

To which I responded, “Lots of squinting.”

Joking aside, Jason decided to do something very kind for me.

Jason coordinated with a large group made up mostly of our tight knit group of high school (and many pre-high school) friends (plus some other very sweet people) to buy me the latest iPad to pass my time during my hospital stay. Over the past six years, I have emphasized over and over that my friends are my drug of choice–they are the best medicine to make me feel well. My friends are amazing even when they’re not bestowing material gifts upon me. The iPad is wonderful, and I thank them all for this fine gizmo. Even more importantly, though, what I take from this is my friends’ willingness to support me in getting well, even after so many years, climbing so high up the mountain, and walking so far down this road.

Thank you all so much. I love you all.


3 Comments so far
Leave a comment

Reid, at times I’m sure you didn’t want to have a reason to be an inspiration, but your approach to all the abuse your body & spirit have endured, is admirable. It seems you would prefer
to bolster everyone else supporting you rather than their giving you strength! Yes, you have that incredible survivor’s tenacity & an amazing outlook on life as the cards have been dealt. Our thoughts will be with you as you go in for this next stage on your journey. Your friends are probably so thrilled they could do something meaningful for you. We would love to help you load some great independent films from Film Festival Flix. Go to http://www.filmfestivalflix.com & let me know which films you’d like to watch. We’ll make this happen for you.
All our best wishes & abundant success, Nancy & Paul Oberman

Comment by Nancy Oberman 11.05.13 @ 2:45 pm

Amazing friends for an amazing person. Makes sense! It certainly has been a tough year but hopefully this EEG will be much more informative than the last providing answers to the cause of the 2013 health hellscape,toward the very end of the year, you know, because it’s in the script. It’s too bad that what might have been down the road wasn’t all that far down the road but you’ve overcome so much and I know you’ll get through this too. A thin silver lining but a silver lining nonetheless:Your stay at the hospital will coincide with five of the shortest days of the year so at least you aren’t missing out on lots of sunshine. The days will start to be a little brighter after you get out of the hospital both literally and metaphorically. Hopefully the health picture will start to look brighter as well. I hope the road to getting well will become less arduous soon, but as you said,there are lots of people who are in your corner no matter what. I know I am. I’ll be on the lookout for interesting things you can watch and read on your new iPad and if you want some company at any point, it’s no trouble at all to make the trek from one weird part of Aurora to another, the UCH Hospital District of Aurora. I’ll be thinking of you when you go in on December 17th. Other thoughts might be there but they’ll be random and of little consequence. ;-) Keep fighting the good fight, Reid. <3

Comment by Krista Harris 11.05.13 @ 10:52 pm

Ahh Reid,
You are a cool cat indeed. Your words are poetic and inspired. You ave touched my heart.

Comment by Cheryl Guzofsky 11.15.13 @ 11:00 am

Leave a comment
Line and paragraph breaks automatic, e-mail address never displayed, HTML allowed: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <s> <strike> <strong>