.....I’m sorry, this is very long winded but it just kept pouring out as I typed. I think I should have written this all down sooner to help deal with some of this. It felt therapeutic. Thank you for listening. The pics are at the end if you don’t want to see them.
I remember at the beginning of the year, everyone said 2021 was supposed to be the year that made 2020 feel like a bad dream. It certainly didn’t turn out that way for me. This is the tale that led me to begin posting here on OPPO after years of lurking around for a decade.
Step 1. Have a seizure.
Almost 42 years of near perfect health came to a sudden and discouraging end on March 6th, 2021. Seriously, almost nothing ever wrong. I broke my first bone, the tip of my finger, last year. Sure I’ve had bumps, bruises, stitches, and I even knocked my front tooth in. The difference is that almost all of those were self inflicted damage. This was different. I had no control over what was about to happen to me.
At one of my closest friends 40th birthday weekend celebrations, at a lake 1.5hrs from home, I had a full blown seizure right in the middle of the party. Thankfully I was sitting down at the time and was surrounded by the kind of people you want to have there in your time of need. People who care about you. One was even a physician’s assistant, who really took charge of the situation while the ambulance came.
The seizure wiped out all of my memory from the previous week to that point, so I got find out what happened second hand. From what I’ve heard I was acting a bit more confused and strange as the day went on right up until I seized that night. My girlfriend had tried to get me to go to a doctor but I was being stubborn(typical) because we were at the lake for the weekend to celebrate my friend. So I agreed to sit on the couch and drink some water. She went outside to get some air and that’s when I started seizing.
My first memory was being on the gurney about to be loaded up in the ambulance. I had been out for about 20-30 minutes at that point. Being in the middle of nowhere can really affect ambulance response time. I had just snapped back into reality and locked eyes with my crying lady. Obviously confused, I asked her what was going on and I will always remember her saying “You had a seizure”. I can assure you that sentence didn’t compute the first time I heard it, but there I was, about to take a ride to a small town hospital to get checked out. I don’t know how to describe it other than scared shitless.
After my brother and mother came to meet us, I spent the night curled up in a hospital bed while they ran some tests. The CT scan was clear, but the small hospital was limited in what they could test for, so I was released the next morning. I soon discovered that I couldn’t walk. My muscles were absolutely destroyed from the intense clenching of the seizure. I had to take time off of work to physically recover and to try and figure out what was wrong with me. It would end up taking weeks to get into a neurologist, so my doctor had more blood tests run during that time than I even knew was possible. They took 16 vials from me in one sitting. That was the first of 4 rounds of tests. None of it would provide any indication of a problem. Discouraging.
Step 2. Get a MRI
I finally was able to meet with the neurologist and described what had happened to me. His first words were “First thing is, you can’t drive anymore for at least 6 months”. I don’t remember what he said after that because I had just been destroyed inside. He had just taken away my favorite thing. My wheel time. My me time. My therapy time. My rock out as loud as I want time. My coping with stress time. My independence. My new car sitting in the garage now just waiting on me. Whenever I needed a break in the past, I could always take some time on a weekend morning and just get behind the wheel to wander off and reset. I’ve been doing it since I got my license. Now I couldn’t use that to deal with what is easily the most stressful thing I’ve ever gone through. As I refocused on his words I heard that I was being scheduled for a MRI and put on some anti seizure meds that might cause depression. They do just suck the life out of me by the way. Feeling stressed.
Fast forward a couple of weeks to the day before my 42nd birthday. I had had my MRI a couple days before. My neurologist’s assistant called to ask if would come in to speak with him about the results. I informed her that I couldn’t that morning as I had gone back to work at this point. She said she would have him call me later that afternoon. For some reason I found that reassuring. Maybe it was no big deal and he’d tell me I was fine. Clearly it was not to be. I was diagnosed with an Arterial Venus Malformation in my brain. It is essentially a tangle of blood vessels that can allow for increased blood pressure in the brain and strokes. I had been born this way and the only way to fix it was to have brain surgery performed. Death, although a very slim chance, was on the playing field now. Fuck. Happy fucking birthday to me. Fully fucking terrified now...
Step 3. Get a Craniotomy
There are words that exist that you don’t ever want to hear in reference to yourself. Craniotomy is one of them. That word almost made me vomit the first time I heard it in pre-surgery. May 24th they put me under and removed a portion of my skull. That hole allowed them to go into my brain and cauterize and remove my small AVM. They covered it with titanium and 22 staples. It took less than 2 hours to complete beginning to end. That included 2 MRIs for before and after checks. What followed was what I describe as a 6 day migraine. Nausea, light and sound sensitivity were all at level 10. I spent 3 days in the ICU while I recovered enough(i.e. could keep food down) to go home 4 days after surgery.
After a couple of days at home I finally started to feel a bit like a human again. I was still being knocked down everyday by the medication but at least I had stopped puking. Looking in the mirror was tough because of the swelling on my head. 2 weeks of gingerly moving about my house and I got my staples out, which was an excruciating experience in itself. Since then I’ve had to figure out how to operate in my new existence. It’s been a humbling and frustrating experience. The first month I wasn’t allowed to be alone. It took 6 weeks for the random drooling from the left side of my mouth to stop. At 42 I have get rides from my mom to work every morning. I go to work and come home. I can’t go grocery shopping. I can’t run errands. I couldn’t run out to buy my girlfriend a birthday present last month. I do get to work on The Fidget some, but the progress has slowed dramatically The last 6 months have been the hardest that I have ever had to deal with, but I’ve learned that I can deal with it. I do feel lucky though. My family and friends have been more supportive than I could ever imagine and I have a new appreciation for slowing down and relishing in the little things that make life good. Also I got my full smile back from the dropping left side of after the surgery. Along the way I gained the courage to start sharing with this group and it’s been helpful to talk with like minded people. Thank you.
Monday I had another MRI as a 3 month follow up to my surgery. They are checking to make sure that there are no bleeds or any other surprises. Tomorrow morning I meet with my surgeon to get the results. If I get cleared I get to go back to my happy place behind the wheel and resume a normal life. I’ll be cleared to go work full time and to get out to work in the garage without worrying about my head. The anticipation is like a knot in my stomach right now, but all I can do is cross my fingers.
Oh, the Colin Chapman title refers to the surgeon simplifying my brain and the titanium adding lightness. It’s a reach, I know.
Just after surgery with my sweet new haircut.
After staples out
From about a month ago