Johnny and the Bed Factory
For the past 3-5 years, I’ve spent much of my time in bed like Grandpa Joe from Charlie and the Chocolate Factory due to my myriad conditions. My diagnoses are Thoracic Spondylosis (a compressed spinal cord) and Arachnoiditis (a pain disorder caused by the inflammation of the arachnoid). What a mouthful!
These conditions cause extreme burning, tingling, and soreness on every inch of the body. In addition, it causes extreme inflammation after what a “normal” person would consider very light activity.
Or maybe, it’s just withdrawals from all the Wonka Bar’s I’ve eaten over the past few weeks trying to find that damn Golden ticket!
It’s All About the Family
I rarely get to see my family, so it was a great opportunity to see everyone when my sister Cara and brother-in-law Andrew’s newborn son, Talon, had his baptism. It was a lovely ceremony because my Grandfather and Uncle led the communion and sang a beautiful song on acoustic guitar.
When Pain Kicks In, You Want to Retreat From the World
During the communion, things went well. I could only bear to stand and socialize for 10 mins (while leaning on my cane). I spent the rest of the ceremony on my gravity chair, which we bring EVERYWHERE and is my defacto sitting device. No matter how comfortable it is, it still hurts after a while. There is no escaping the pain, just deciding which kind I’d prefer. There’s a lot to choose from on my menu, which makes it the best *joint* in town!
After the communion, my wife and I walked to the Apple store (in the mall). We had a Genius Bar appt to fix my laptop screen. My wife had to carry the huge gravity chair into Apple, open it up, and lay it out (where I sat for the duration of my ‘Genius Bar’ appointment). My wife is an angel transplanted from Heaven to Earth for me 😇
Please don’t get the impression that this chair is my holy grail. It’s just “a” chair I’ve found that causes less pain than others. But after hours of sitting, the pain starts to build. If I don’t get out of the pain, inflammation builds and a months-long flare may commense.
We left Apple and started walking toward the exit of the mall. I was shivering with pain and, in 15 minutes, I may collapse – I never know as the pain is very unpredictable. My wife went to grab the car and helped me in. As I lay on the mattress in my car, my nerves calmed and I started to feel better. If you don’t know why I use a mattress in my car, please read, “Why I Use A Mattress In My Car”.
After more of the same that weekend, my wife and I drove back home, knowing we’d be back the next weekend.
The Trip Back
I haven’t traveled for 2 weekends in a row for 6 years. But, I had a Doctor’s appointment where my family lived (2 hrs away) on the following Monday. My wife and I decided to stay with my family from Friday to Monday.
I could not wait to spend more time with my grandpa, who was diagnosed with Parkinson’s. My grandfather has been a huge part of my life since I was a boy, and one of the biggest advocates for my myriad conditions. He is also still as sharp as a tack, as indicated by his performance on Jeopardy.
I also dearly want to catch up with the rest of my siblings, immediate, and extended family when I see them. Sometimes, however, I feel like I’m just “there” taking up space. Many times I’ll notice others chatting with each other about their hobbies and work, avoiding asking me questions because they already know the answer – he’s still sick, still in pain, and still basically chair/bed-ridden.
I met up with my sisters and their significant others for Sushi downtown. I enjoyed myself, but after two hours I felt the fire creeping up my back. After that, we went to my sister Cara’s place and watched the Argentina/Brazil game. Four long hours later, it felt like someone was snapping my lower back in half. We decided to leave and get some sleep.
The next morning, we went to my grandparent’s retirement community for close to seven hours. We watched Jeopardy together, which my grandfather, myself, and my wife all love! Then I showed my grandparents my music, and my grandma & wife went to the mall while my grandpa and I talked. My back was really getting irritated from the gravity chair by the time we left.
The Start of a Long Flare
From there, we went to my sister Christina’s and I laid on her couch. 30 minutes after arriving, all the movement caused my entire body to spasm and lock up.
I couldn’t move or stand up. I attempted standing from my sister’s couch with my cane, but everything hurt so damn bad I just kept collapsing. It took 2 of my brothers to pull me up and walk me out, where my wife had the car waiting.
I’ve been in bed for 2.5 weeks now, and it still feels like a gang beat me with bats. I’ve had dreams of dying violently, only to wake and realize it’s my pain. Sleeping has been very difficult, but finding the strength to stand up and be on my feet has been close to impossible since the incident.
Moving On and Finding Peace
I know I’ve got no other choice than to push on and face my current and future struggles. Arachnoiditis is currently untreatable and gets worse over time, so that is giving me a lot of anxiety about the future.
However, I’ve discovered that documenting my journey not only forces me to put what I’m feeling into words but gives me a journal to look back on. I also hope this helps other individuals in a similar situation as me.