My disability

I encounter a lot of people in life via the internet who once they encounter me physically have their vision shattered. This has been the case when I was an IT Engineer on the groups/forums and responses from published papers, only to have people give the look of, "What, you're him?!" or "That's you?!".

I want to share with you, and hopefully this will help you understand the person behind Betsy's wheel, as share to those who are amazed via her clean mTDI diesel engine conversion install. I want to clarify expectations of the image people have based on what they read or have had me share on social media sites in help or support. Or when they contact me thinking I have more than what is on this wiki--I made the wiki, because my technical mind is slipping. I need to off-load info that isn't helping my brain is the best I can explain it.

I was born with Cerebral Palsy specifically a mixed case of CP;

• Spastic - 70%-80% of cases

• Ataxic - makes up a small percentage of cases (I.E. still too few cases to gather data points off of!)

CP is on a spectrum of severity, but severity is spectulative at best. My brother had CP as well (rare and a story for another time). I was the eldest, I'm alive still, he is not. He passed in 2015.

A key point people don't realize about CP is, it's non-progressive, the CP itself never gets 'worse', its severity is across a spectrum. You initially have the brain-damage and stroke at birth, and make due with what cards you're given.

Growing up, before my younger brother whom also had CP was born, I was dragging with my crutches, talking like a slithering snake monster, having learning issues, I spent 7 years in my elementary years in physical as speech therapy. The sloth, lizard speaking stick monster is coming near the abled kids! If a kid was picked on, that kid was me. I was the blessing of the able kids who did get picked on before I arrived.

That's a real thing people, the effects society able treat the disabled and how disabled learn or observe the local human species and think, "WTF?" throughout their lives, because the disabled are the lowest of the abled world since we weren't "all" there. We are not "whole", I've had people tell me, "You'd be amazing, if you had a whole undamaged brain." Gee thanks for the compliment. Able's (non-disabled folk) are confusing a times.

That again is for another story for another time, but that 'reference' of how it bends the will of the person's self worth, is a real struggle.

When my brother was born, his severity was more than mine, so my needs were put on the back-burner in response to help the needs of my younger brother. During this period, my father got brain damage from a motorcycle wreck that turned a nice happy supportive father into the complete opposite abusing everyone mentally and physically. He died of a heroin O/D when I was 15, and my mother was left to raise two disabled boys with CP, and two young girls.

Due to giving up on the world, and an underlying desire to know why the world does what it does, I dove into a lot of shit most don't do at age 15-20; eating sheets of acid in a sitting, lots of pot, shrooms, etc. I did a lot of drugs, I felt safe--all natural except the acid--and I still do to this day just not as excessively. Between the drugs and a few opportunities, as my local aged peers typically feared me, and older people (20yrs my senior) were sympathetic to "gimpy". Those opportunities gave me a possible direction very few disabled folk have; road to independence.

Most people have heard about CP within children, but few hear about Adults with CP. One of the biggest key's with adults vs the young, is there isn't much information about older people with CP. My birth at the time was a rarity and written up in the Red Cross journals in 1980, I was one of two that year who had my particular gift of CP given by something they never saw before--story for another time!

But what people don't realize is, CP as itself doesn't get worse, you get many secondary conditions BECAUSE of ones CP. Those secondary effects are the devil in the details.

For example, I've told you what CP I have above correct? What are these "secondary" issues I speak of that are the real devil of the details?

How about that I was born cross-eyed, only to have real surgery (not laser shit) shit that you have memories still when you're a grown ass adult. But that surgery failed on your left eye, so now that no worky and drifts all over. You got one eye now buddy! Fuck, least I'm grateful, one was good. Some student there had a good start on a career! It was free surgery, because my parents were too poor to pay for it. Medical school is free if you sign your rights away. My brother had brain-surgery with his CP, and he went blind in both eyes after it. Least I have my eye. But did I also mention I have epilepsy? Yah, seizures do happen, been awhile, but my brother had em' too.

We can also fast forward into when I got my first high stressed job at 21, making $54k, as a senior UNIX Systems Admin and Head Info Security Architect as primary WAN backup-monkey. My coworker was 30yrs my senior. I had a second stroke, my coworker bailed, and I had a recovery with a second stroke without medical assistance. That's rare, but it was identified on a later MRI.

My vision was corrected via the surgery, but I'd get massive migranes. Turns out investingating, my optic nerve is opiac white. Where it "should" have color when healthy. When white, as such usually means you're blind. It was freaking out the docs when they discovered it. Another fun fact, ones field of vision loss is around 10%, this is the missing portions of the flipped image that enters your mind that your mind "makes up" from thin air and plugs back into the image so you can process. I'm around 35%, the doctors tripped, "You see, but you don't see!" Yes, that's me. Ask me to look for a carton of milk in the fridge, I'll miss it ten times, and ask another to get it. Guess my brain said, "naw that's not important!" Hasn't been an issue driving, or least nothing yet *knocks on wood*.

Due to chances, of determination, will power, and the determination to fit in an abled world, I eventually made a career leap to NASA-JPL, doing some stellar awesome shit. Before then and shortly after JPL, I had other pretty crazy career gigs before my health started to feel those issues of CP mentioned above in adults:

Premature aging, horrid leg, back, neck, spine, just horrid body pains all over. My hands from carpal tunnel typing like a fiend for years, lifting heavy ass 200lbs Sun servers, etc. It all beat away at my body, as mind.

Around 2008 when a NASA-JPL, I knew something was afoul, I was either dying, or I'm way over my head in what a disabled person should be doing. I don't know. But because of how shitty our health-care system is when a group plan knows you have a disability or when your disability becomes an issue of company profits, you have a hard time geting any real results. So, I went behind the system and out of pocket. I went and got MRI's for my brain, paid a neuro out of pocket for an EEG and some other stuff.

My neurologist at the time was woken up at night by the MRI tech told that, "the 68yr old male needs to go to the hospital stat for the damage." where she corrected, This is a 28yr male and he works for JPL-NASA. And that it was him who requested the MRI." The tech was dumbfounded thinking the DOB was an error.

The EEG, performed indicated my brain reboots and levels out 7 time a second roughly for a better term. It was something they never seen before. Surprise! I still know how to keep em' on their toes!

Also, from those collection of MRI's I obtained on my body, it was discovered I have servere Degenerative Disc Disease (DDD), Severe Spinal Stenosis that's in all three areas of the spine (and forced me on a 10lbs lift limit). As other bone anomalies, all in relation to premature aging.

It's now 2021 while I write this, I guess I could do the math to see the difference, but I feel physically older than 65 LOL.

The adult CP site page linked above states, adults with CP generally use up to 5 times more energy than able folk. I whole-heartly feel this is true. I also have spent my life pushing past my point of exhaustion to match an able persons resolve. Since, going on disability and SSDI, I'm no longer interested in matching up to an abled world. I rather go camping, see the VW folk smile have fun, tell stories, and smoke some blunts.

But I feel, to those reading this site who are wanting to convert or wanting to work on their van and feel that: they are not smart enough, not strong enough, or whatever excuse, you need to realize first: The excuse you make, is only the fear your create. Fear, fear would never of allowed me to succeed in this world, fear is what holds anyone back from their full potiental disabled or abled.

Instead of fleating to ask myself or the many groups on the internet. Sit, gather some focus, remember my story, and digest what I've given to the community in bite sized chunks. That's how I approached it, small bites, to eventually reach the final goal. Patience, and dedication of a turtle.

You got this! I hope my story has inspired your self-worth!