I turned 34 at the end of 2018. But that was never a certainty. I mean, it's not really a certainty for anyone. But I have always had an expiration date that I didn't exactly stick to. I am the expired milk of humans. Limping along, just hoping to make it to breakfast. Breakfast has sausage and egg muffins.
What am I even talking about? Right...so I'm disabled. If you saw me, you'd say, "What's wrong with you?" Because unless we see it, we don't believe it. Well, let me take you back. ***Dates and times aren't exact because I have a horrible memory and many situations blend together. So bear with me!***
I was born in 1984. Premature. And according to my mother, "a real quiet baby." A dream right? Well, to some yes. But that was a sign of a much larger issue that wouldn't be addressed for many years. About 8 or 9 years later, actually. Remember the dates issue? This is where it starts. And my first major surgery to fix a very unusual, unique problem.
But first, bloody noses. That was the first real sign as a child something was wrong. I would wake up in a pool of my own blood, soaking my pillow. White pillow cases stained dark red. And horrible headaches that lasted for hours. "On a scale of 1 to 10...10 being the worst. What would you rate your pain?" Well as my favorite comedian would say, "Four stars!" I always pick 8. If you're an ER nurse...it's always an 8 because I can't bring myself to say higher. I want to. But I won't. Just give me the drugs and lets not play this game lady!
So, the bloody noses led us all over the southern part of the country. We saw every pediatrician and psychiatrist...or psychologist. Which one tries to convince an 8-year-old they are inventing headaches and life-endangering nosebleeds...THAT ONE. Or the one that told my mother we were just looking to "score drugs." THAT ONE.
You caught me Doc. I'm the 8-year-old White Boy Rick. Slinging pain pills all over the playground to kids that want to perfect their hopscotch game, but need that competitive edge. That's what you took years of extra schooling for? I either imagined it or I am a drug seeker? Take all the money! You earned it.
So after a good while of that, my local pediatrician, suggested I see a twin brother Neurosurgeon team in Panama City, Florida...the Stringers. Two of the most amazing human beings to ever put on a white lab coat...Spoiler Alert...they kept me from dying. They see that I'm not faking my symptoms, scan my head and discover I have Hydrocephalus. While I was being investigated for drugs and imaginary friends, I was slowly building up spinal fluid in my head. That's a huge "uh oh" in the brain world. Your brain needs room to do its thing. And it can't breath when its got all this extra pressure from fluid that just won't leave. So once they knew what the problem was, they knew how to fix it. Drill into my head and put in a shunt. In simple terms, a shunt is a tube that drains fluid from the head into your stomach or an extra space in the body cavity that can take it and get rid of it naturally.
I got to chill in a hospital room and play Super Nintendo during my recovery. And I got some sweet baseball cards. My prized possession was a Don Mattingly. And while my body and head healed up, I was homeschooled, sort of. I went to my Middle School for some classes that year and some I did from home. I believe it was my 6th-grade year. Then shortly after, I started having some discomfort with the shunt and the tubing in my stomach. Little known fact: If you shove a tube into someone who has a brain issue that stunts their growth, relieving the problem and not putting enough tubing in the stomach is a "no-no". Now, it wasn't NBA level heights I was reaching here, but it was more inches than they anticipated. I topped out at a whopping 5'3. So surgery to add tubing was done and I was perfect. I don't remember any real need for surgery anymore after that. Maybe a corrective eye surgery for double vision, that wouldn't take because the fluid buildup behind my eyes would tear the work they did. So I just learned to live with it.
As I reached my 20s, the catheter tip in my stomach decided it wanted to play. So it started causing problems. And thus began a love-hate relationship with surgery that lasts to this day. They would cut me open, I'd be fine for a while. Then the tubing would freak out and clog up, like a frat house toilet. Too much?
Anyways. My stomach and abs...I miss my abs...started to reject the tubing. And the scar tissue buildup was so extensive and solid, they were doing surgeries just to remove scar tissue. And cutting into me to remove scar tissue, creates SCAR TISSUE. So it was an uphill battle. But now we were in the 2000s. Recovery time was reduced. Hospitals are discharging you the next day or even the day of surgery. Either to keep you from getting sick or reducing costs they pay that your insurance won't cover. And even the surgery is becoming less invasive. Ah....the advancement of medicine. But now I'm in my late 20's and I've just had a huge yelling match with one of the twins. Remember the Neurosurgeons? Not sure which twin. But I'm yelling that they would just rather I die than have to cut me open. He's yelling about stats and complications. It's a real Lifetime movie moment in there. It erupts into a parting of the ways. Now, I have to do something I've never done: Find my own Neurosurgeon as an adult.
Just an FYI...the whole Scarecrow thing is...because he wanted a brain. I wanted a brain that worked. Now you know.
Part 2 COMING SOON!
