08 novembre 2010

OK, now it's personal...

I have MS.
No, you don’t know what that is. You may know the dictionary definition of it, but you can’t ever actually know the affects or the consequences. Most do not.
You may have it or be close to someone who does. Even then, they will hold out on you about certain things. No, not because they want to, there’s just too damn much.
It can never be fully explained because it is constantly evolving. Consistently messing up different parts of your life.

There is no cure.

This is difficult for some to accept. No colored porch-light or trendy colored ribbon will hasten a cure. There isn’t a “magic pill”, either - even to make the symptoms go away or get better. None.
Get used to it – I certainly had to. No, the tsunami just keeps on coming without end.
Oh, I’m on meds: IV injections, once per month – costing ~$14K each (yes, you read that right) in order to minimize ‘exacerbations.’
Oops! Minimize not eliminate. No, after 3,000+ milligrams of Solumedrol and 7 pills per day to treat the Trigeminal Neuralgia later…..the current exacerbation continues – although, thankfully, the TN pain has tapered greatly. No, never completely gone.

Example…when you wish to move from point A to point B, a hundred things *have* to go through your mind (What are the things in my way? What can I hold on to next? Will that hold me?- being just a small sampling). Every move needs to be planned out before you can even think of going mobile.
So what happens if there is nothing for you to hold on to? Well, one of two things: 1) you don’t go or 2) you go and hope your momentum will be stopped by something soon – as you play it off like you’re just being goofy.

I walk funny.
Wow do I walk funny. I know this. People ask me “why don’t you just use a cane?” Well, the 2 main reasons are that my hands are mostly numb so I really can’t tell where the cane is most of the time. And I can’t guarantee that I won’t fall more with a cane by tripping over it.
Eh, such is life.

So why am I talking about this here? Well mostly because I know no one reads this blog anyway and let's face it: blogs are mostly cathartic - political or not. But more importantly, I am really tired of people telling me “I look fine” as I’m sitting.
I swear, if I hear that just one more time, I’m going to….....what? Try to stand quickly so I can try to fall on them? No, my options are quite limited these days.
But know this: even though I walk like the drunkest man on earth, my brain has not been invited to that party and continues to be sober.
What, you thought I was going to say sharp? Nah, even though sarcasm is my weapon of choice, I don’t like it to be common knowledge. I still want some surprises. Oops.

I know we will never see (I think) orange ribbons at any of those trendy Hollywood award shows. I understand that the disease, for the most part, is not fatal. I’ve always said that it wouldn’t kill me just piss me off even more….like the world needs that.
Isn’t it great though, that we finally live in a world without AIDS?
I mean….it must be gone. How many of those ribbons did you count at the last Hollywood pat-yourself-on-the-back show? It must not be a problem anymore.
Or perhaps it’s just not trendy anymore.
After all, that’s how you know people really care, right?

7 commenti:

Bev ha detto...

I wish I could give you a hug!


Bob Belvedere ha detto...

Thanks for saying what I've hesitated to say over at my joint.

Once people found out that I had cancer four years ago and ever since, I've had to put up with the same stuff, especially since one of the chemos left me with neuopathy in my feet and I walk funny.


shreyas kamble ha detto...


Anonimo ha detto...


http://simpletobusiness.blogspot.com/ ha detto...


Joann ha detto...

I'm sorry to hear how bad it can be - it's so unfair and totally stinks.

I recently read 'The Fault in Our Stars' which gave similarly touching and even funny insight regarding terminal cancer. My daughter insisted I read this teen romance and it's recommended reading. The movie version will be out soon. Hope they don't 'Twilight-cize' it too much... but I'm prepared to be disappointed.

And finally - a pop culture/science question for you - have you seen there's a new 'Cosmos' TV show? I hear it's a little silly and bombastic, but it makes me want to go back and watch the old school Carl Sagan version.

Joann ha detto...

One of my favorite running lines from 'The Fault in Our Stars':

"Life is not a wish granting factory." Ain't it the truth?!