Disabilities

ASAP Science (MS)

(Cover photo courtesy of ASAP Science)

Strap in shits about to get serious. I’m going to make a lot of you uncomfortable, please check your bleeding heart at the door. I’m not writing this for sympathy cards, but feel free to send money.

I’m joking around.

Apparently I’ve won the wrong lottery, rather than millions I got two disabilities. Luck of the draw I guess..I’m going to break down a little of both so here we go.

Living with disabilities is hard on it’s own, then, throw in school, being lower class, and a family in denial. I never fit in anywhere; even amongst my “friends” I was always the odd one out.

From the day I was born, it’s been a fight to be ”normal”. I dealt with everything from leg braces, to pain that is so bad words don’t do it justice. If I had to put it into words, I’d say, it feels like small hands; under my skin, squeezing my muscles and bones.

I’ve had different types of therapy, occupational therapy and physical therapy. The difference between the two, or at least how I understand it; PT is stretching, while OT, is more so physical movement: jumping ropes, moving in ways that stretch the muscles, for example, picking up a rag with just the toes of my feet.

It’s hard to digest in elementary school; “if you don’t use the muscle, you’ll lose the ability all together”.

I can’t begin to describe how difficult that is to process; especially at such a young age. Shit, if in being honest at 32, it’s still bothers me.

At 16 years old, I was basically informed:

“the stretching will keep your body lose, however you’re fighting an uphill battle. Unfortunately there’s not much help any doctor can give you; just try to make the most of your life while you can, I know it’s hard but what’s done is done.”

Obviously those weren’t the exact words, but damn close enough.

I’m not going to bother, to get into how difficult it was to enter the sex life; part of growing up. I’ll just say, I had women asking about the disability, as if it was an STD.

I walk with a limp, which apparently, made some think it’s contagious. While others, saw an easy target to jump and beat up.

As twisted as it may seem, I’m happy it happened that way, why? Because it helped mold me into a better person, teaching me how not to treat others who are different.

Doing myself no favors, I dress in baggy clothes; I don’t like the feeling of being restricted. I also identify with gangster rap, and hip-hop; it could be because of the neighborhood I grew up in, but I think it’s also the “going against the grain” type of attitude.

Outside of the disregard for the law, there’s a lot of talk about being hated; just for being different. While I may not be the same color as most of the artists, I relate to parts of the struggle.

Before I go any further let me break down what the disabilities are:

• Cerebral Palsy is a neurological disorder that affects things such as speech, motor skills i.e walking mobility in general

• Much like MS there’s many different types although on a scale from 1-10 i have about a 1.5 affect from it.

• Sadly that’s “a win”considering I should be in a wheelchair with a keyboard that speaks for me

• I get away walking with a limp that’s permanent among other issues.

MS, a disease that basically deteriorates your body over time. Making your own cells, attack the very vessel their suppose to protect. I’ve included a video from some cool science guys if your interested.

Why bring this up?

Well just for “shits and giggles”, I looked it up on the wikipidiea. One thing I noticed, lots of outsider perspective, medical terms, and no “real insider view’ (of what it’s like to live with it.)

Granted it’s different for each person but we all have one thing in common NO CURE! Medication is available, however much like everything in life it comes at a price.

• Some come in pill form which is similar to chemotherapy,

• other opinions are self injection

• bagged IV.

to give an insight on side effects include

• hair loss

• losing teeth

• hepatitis

• nausea

• vomiting

• lower immunity

• difficulty moving

That’s just a few, not to mention the mental strain of knowing it’ll take you down eventually. What a great thought that is huh?

Well, I may not have purchased the tickets but bet your ass I’m going along for the ride.

Most people, would’ve tapped out by now, not me. I’m under the impression, that if I were to take a dirt nap; A cure would be available an hour later, I’m not delusional maybe one never comes.

You know what does? A bad ass story! An underdog that spits in the face of the odds, taking no prisoners.

How I found out i had it:

I was watching a younger family member, to give their mom, a chance to have a night out.

I had a little bit of blurry vision, but i figured it had just been a long day not much to worry about. Out of nowhere i got a migraine the likes of which should be illegal.

If i had to put in it into words I’d say it felt like every inch of my head was in a tightening vice. It got so bad I couldn’t see, literary.

I managed to keep one eye slightly open to dial my mom. At the time I lived around the corner from her, (luckily) she came over; called the family member to come back.

It was the longest hour of my life (at least at the time.) From there, I crawl into a car and bury my head in my hands, thinking the worst.

A few tests later they tell me it’s MS or Lymes disease. With that information I did what most idiots do and push off getting checked out, out of fear.

That was in 2009 so you can see how reckless it was to wait long as I did.

I see the same doctor from the E.R. who sucks you’ll see why; as I happen to have him later on. He sends me for a bunch of testing, after which confirms his suspicion I had (MS.)

Remember, when I said, the head pain was as bad as I thought it would get?

Well I was wrong, this dude sends me for a spinal tap…if your not familiar congratulations and welcome to modern times. It’s to quote a different doctor “archaic”

I’ll set the scene for you:

In an operating room of sorts; there’s a table with an x ray machine above it, which is so they can narrow down the exact point of entry.

The doctor comes in who’s gotta be fresh off juice boxes (younger guy.) Which is fine; long as he knows what he’s doing, considering, I had to sign a waiver that basically said:

“if you don’t walk out of here it’s not on us”.

I ask the dude if he’s been doing this long to which he says: “I do this, all day everyday man. This is all i do; you have nothing to worry about”

Good to know, but then as I lay face down to getting ready to be “stabbed up” and he adds:

“Well I’ve never had an issue before so let’s hope your not my first”

I’m all for jokes, but I don’t think he was joking around. The needle that goes into the spine is has to be at least 2 inches round and long too.

The best way I get describe the feeling of draining spinal fluid:

Having a bucket of nausea dumped over head. Instant chills, shaking, losing control of your own body; knowing one wrong move you may never walk again!

Now obviously I’ve never bled to death, but honestly if there’s a way to be able to get close to it, (while living) I’d imagine that’s what it feels like.

I bring up these key points, for the reason, it doesn’t get talked about, more so glossed over.

I left out the part, where I damn near shit myself, after I found out I had it. As you can imagine; the panic hits the “shit your pants” part of the brain.

Since the mid 80s’, this debilitating disease has thrived, with no cure in site.

Marijuana helped me; with the muscle tightness and overall pain (plus my mood).

I don’t use it now, as I’m in “pain management” though all the doctors I’ve seen refuse, to help obtain a medical license.

As legality is Pending in NJ, and obtaining a card cost hundreds of dollars. As well as a “where’s Waldo” type search for the proper doctor.

On top of that, most medications that “manage” (slow the progression down), aren’t covered by insurance.

It’s a painful long road ahead, I hope by touching up on this; someone else, who has similar problems can feel better. Knowing that you don’t have to give up the fight.

Mental toughness, is essential to living, we may not beat the odds this generation.

There’s always hope for the future. Remember, the second you give up the fight; your chances of staying ahead drop.

I’ve seen it with cancer patients, you have power in a powerless situation. I’ve fought, my entire life from being born one pound and few ounces, cerebral palsy, now multiple sclerosis.

If nothing else good comes from my struggle take this as inspiration.

There’s so much more I can add; the helpless feeling, wishes for death; to have an escape from the pain. The judgment of being a “freeloader”, because of disability checks, but it doesn’t matter what others think.

Fight to live; make life worth living, despite the issues. At the end of the day; we live our own lives, no judgement can change that.

In times, where it feels hopeless; those are the best times, to reach deep inside to keep fighting. It’s not easy, in my case, it seems to be more difficult.

Nothing in life, worth a damn comes cheap or easy. Ironically, for me at least; it makes the next day feel even better. Knowing that i fought for it and I earned it. Nobody, can take that away from you or me.

A lot of people, suggest support groups; supposedly it helps. Having said that, if you need somebody to relate to, reach out. All we have is one another; don’t be mad at people who don’t have it. How can they understand something they don’t feel?

My contact information is available, if you’re looking to talk about it. Hopefully this has been informal; for those who don’t have it, or know someone who does.

My Twitter

I wish you all the best, maybe one day we will have a cure; until then at least we have the ability to communicate.