Original Injury – How it began – Picture it, 1974
I would like to share with you some information on how our Organization got started and why by telling you my story.
I must warn you ahead of time that even though I will try to be brief that when you are telling a forty year long journey it can take some time, so grab a nice cup of tea, sit back, and enjoy 😉
I was officially diagnosed with RSD (now known as CRPS) in April of 1993. That was 8 years after the auto accident which broke my back, tore both rotator-cuffs, and covered me from head to toe with bruises, but that was 19 years after my medical ordeal started in 1974. Apparently the spinal injury was when the disease evolved into full body, or systemic CRPS, not unusual for CRPS patients.
Up until then my CRPS had been fairly well contained above my neck; face, eyes, ears, top of head, etc. It manifested itself in the typical CRPS ways though; constant burning pain 24/7, migraines, extreme sensitivity to touch, sound, vibration, temperature changes, and all of the other allodynia issues we all know so well. As well as in some unusual ways such as having some part in taking away the vision in my left eye, but compared to systemic CRPS, wow, it was a walk in the park 😉
My symptoms had been going on and slowly increasing since my original injury in 1974. I was hit in the face with a baseball, crushing my cheekbones, breaking my nose, and resulting in the loss of the vision in my left eye. It was partly my own fault I guess. I was the pitcher and if I had thrown a curveball instead of trying to challenge the hitter with a fastball, well, maybe I would have struck him out instead of having him hit it straight back at my head. Actually most of the pitchers in the videos below probably would say the same thing because their pitch counts were mostly full! Coach wanted me back in the game, I wanted back in the game. I was winning, WE were winning, and my dad just wanted me to go to the hospital.
Funny thing was it didn’t hurt that badly right away. Not until about 30 minutes later, then, yeah boy! It did bleed like a son of a gun for a long time. We couldn’t get it to stop bleeding. They had towel after towel of blood. Sorry to be gruesome here but it was pretty gruesome and I will warn you now, don’t watch the videos below if you are squeamish.
Let me show you a few videos of other pitchers in similar circumstances. These are guys who suffered the same injury I did, some ended up worse than I did, some better. How can that happen? How can it be that bad? It’s just a little tiny ball right? In almost all of the videos, doesn’t matter the age of the pitcher, 14, 17, 22, the pitcher gets hit when the ball is going about 100 mph. I was 14 years old at the time, playing with 16 and 17 year-olds so my ball was going about 100 mph too when it hit my face. Maybe I should have learned to throw knuckleballs? If you know baseball that makes sense.
Video 1 Pitcher gets hit in head by pitch
Video 2 Pitcher gets hit in head by pitch
Video 3 Pitcher gets hit in head by pitch
Video 4 (this last video talks about how they are working on new hats and helmets)
Pretty rough huh? Especially to the the guys getting hit. They are now developing special helmets for pitchers and even hats with extra padding so if they get hit in the head it won’t result in brain damage, as you saw in the last video. I don’t know if anyone else ever developed CRPS from this type of injury besides myself. If they have and read this, I would love to hear from them.
I still remember lying on my back on that skinny little bench holding a blood-soaked towel to my face and thinking, I wonder if that counts as a hit or an error because I had a no-hitter going and had three hits in the game. That seemed very important to me at the time and I still remember it. I also still remember my dad and the coach arguing back and forth about whether or not I should stay and try to go back in or go to the hospital. It got pretty heated.
Of course I ended up at the hospital where they re-set the nose, fixed my cheekbones, packed the nose with about three hundred yards of gauze and gave me a big beautiful nose cast. There is nothing like a big ole white nose cast on an already good-sized italian nose let me tell you. And they don’t tell you what it is going to be like taking out the six miles of gauze when they take the cast off either! Yikes! Holy Moly! It felt like a magic trick gone horribly wrong. I kept waiting for some cheesy circus music to start and a rabbit to come out at the end of the gauze!
Doctors, Doctors, Doctors
Looking back, it does explain a lot of the physical issues and memory problems I had in high school as well as in college that either the Drs. never could figure out or I never even mentioned to them because it never occurred to me to do so. Symptoms like short-term memory problems, migraines, problems with sound, vibration, light sensitivity, loud and/or sudden noises, extreme pain with the onset of the change in seasons, and then I even started having difficulty with physical activities like running for any length of time which made football practice and other sports activities so much harder in high school than they were in junior high. I didn’t understand why I couldn’t keep up physically anymore like I did before. Now I understand that it was the beginning of the spread of the disease, fight/flight response, allodynia, and many of the basic symptoms of the disease.
And of course they did not actually diagnose with me with RSD back then, in 1974. Not yet. Back then they had no clue what RSD was. They had no idea what I was dealing with medically. My parents took me to pretty much every physician in the state of Massachusetts and then we crisscrossed the country visiting every hospital seeking an answer. We didn’t find one but we did find some interesting Doctors with some not so interesting opinions of my “problem”. See if you recognize any of them 😉
Recognize these diagnoses?
Your son is on drugs. Your son wants more drugs. He is seeking attention because he is the fourth child. He is acting out. He is making it all up. The pain is all in his head. He is exaggerating his pain. A few even tried to say it was a couple of other diseases which they then researched and dismissed. And so forth. I remember a speaker we had at one of the first conferences we held back in 1995 I believe. His name was Dr Hooshang Hooshmand, or “Hoosh” as he asked us to call him once we became friends. He said “Of course the pain is all in your head, that is where you feel pain!” Gotta love the Hoosh! Anyone who knew Hoosh knew all of his little sayings like that.
College – 1982
We never found an answer though. That didn’t stop me from graduating high school, playing sports all through high school, or attending and graduating from college. While the short-term memory problems did make college interesting, especially learning my lines in the dozen or so plays I was involved with, my illness not only didn’t stop me from graduating in 1982 but I was also blessed with being able to be Technical Director at the University’s Theatre for the last three years of my time there. Memories I will always cherish. I did not understand why I had so much difficulty remembering things, studying, learning new things, etc., especially compared to everyone else but I simply found ways around it. I learned ways around the pain as well. Most people I went to school with probably never knew I dealt with chronic pain that whole time, with no meds, no self-medicating, no drugs, hardly ever drank, etc.
Auto Accident 1985
So we jump to 1985 and following the auto accident, came some very interesting years. Suffice it to say I spent quite a few months restricted to bed due to the severity of my injuries. I had spinal surgery and rotator-cuff surgery in 1987. Following the surgeries I spent a total of 20+ months going through physical rehab and during that time I was on SSD for a short period while I recovered. Afterwards I went back to work. I thought I was good to go. Remember, still no CRPS diagnosis. I still had no clue what the underlying chronic pain condition was nor did I realize that what I had just gone through and/or the surgeries had actually made the disease worsen and spread.
Eureka! Diagnosis 1993
It was only in 1993, when they FINALLY made the actual diagnosis of RSD that they discovered I have actually had this disease since 1974, when I was 14. This was what I had had all along. The Doctor read me the diagnosis out of a book. She said that “it would burn itself out in a year”. Since I had already had it for 19 years I was rather dubious of her assessment. Three months later I met with a pain management specialist who told me that we should buy not rent a wheelchair. I will never forget either of those conversations.
I ended up going on permanent disability that year but I finally had a name for my main pain issue, now to be added to the back problems that were developing. So, RSD? Great! I can find all about the disease, find a good Doctor, learn how to fix it, and then get on with my life. Right? Right? Hello?
In 1993 I moved to Maine shortly after I got that diagnosis and moved back home, back home to mom and dad 😉
I needed their help and they were there for me. After discovering my Dr. could give me little more than a name for my condition, I turned elsewhere for information. Instead, I found a HUGE hole where information should have been. My family and I decided we could not be the only ones looking for information on this disease. We looked to see what we could find for information on the disease.
To read more on how our organization formed next, read the ABOUT US SECTION.
I was pretty much stuck in the bed for a year or two I guess. A lot of those first couple of years in Maine are blurry. Lots of pain and lots of medication, lots of physical therapy broken up by chatting via computer with new friends on that new fangled thing called the internet and the first CRPS website!
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