Author: Stax

Carnival *sigh!*

I cannot play mas again! WOWZER!!! it’s just too heartbreaking to be in the middle of it and not be on the road; hence my breakdown in DC last year.  One of my favorite lines in “Unconditional Love” by Machel Montano is “we hypnotized by the music from d truck so we walking for miles”; it’s such a true statement and really captures the essence of Carnival…well 5 mins into walking those miles, my ass would have to stop! 

We have come up with a way around it of course…we only play in bands that we have contacts/know the leaders, so that we can organise for me to be on a truck.  For the past 2 years in DC (it’s the only mas that i actually play in up here), I’ve been a fixture on the drinks truck in one of the bands – and that’s my parade.  It could be worse, it could have been that i didn’t even have that option.

I don’t think that i want to go back home for carnival ever again – at least not while suffering from Foot Drop/weakness.  While i am not a burden to my friends here, i know that Trini carnival is a whole nother beast and i cannot/will not slow them down besides, if i cried down the place in DC, what the hell would happen on Independence Square!

My Support Group Part II aka My family

“the ‘rents” are not here; they are still at home in Trinidad.  I know that my mother wishes that she were here to be with me while i was being tested and the diagnosis, but I had the next best thing; Gib was here.  Many times i also wished she were here too, i dunno bout allyuh, but when I get sick, she is the first person I call…but it is what it is and she lives at home.  I’ve also called her to be “talked off the ledge” a time or 2 and as I mentioned before she has told me that i cannot return the disease, i have to live with it.

I have to credit them both for my positive outlook on this situation.  Anyone who knows OB knows that he is the life of the party without even trying too hard and Learls, even tho she is more reserved, eh too backward herself.  I know that i have their support – even across the ocean and they are just as “in this thing” as Gib is.  As I’ve mentioned before in tru Trini stylin, there is never a dull moment when we’re together.  Laughs/jokes/picong (trash talk) cyah done…that is the best way we know how to deal with difficult albeit serious situations.  “S” calls it “my caribbean/Trini way of thinking”.  We really try to make the best of a bad situation and i don’t waste time on things I cannot change or control.

My Support Group part I aka My Friends

I couln’d t do this without my “support” group.  In tru Trini style, we make light of a difficult situation.  If I don’t laugh, i certainly will cry and that is NOT acceptable; as I was once told, “MAN UP!! MAN UP!!!…we have NO time for crying/tears right now!!!”.  In their defense, G and T, it was on Georgia Ave in the middle of DC carnival!  :-), but i think their reaction made me cry some more.  It was 2008 and the gravity of the situation HIT me like a full BUS (It was the first time that i’d actually cried since being diagnosed) …oye!  I will not be able to play mas ever again! 

I had actually spent my last carnival at home sleepign on top of a speakerbox on top one of the trucks…if only i knew then what i know now!!!

dem…and a few others

Anyhoo, I digress.  My friends; they keep me going…

  • G; my rock – I’m not sure if i could have even gotten this far without her.  She will bouff (who really knows how to spell that word) anyone into submission to ensure that they take care of me when she is not around.  I’ve had to call her to talk me off the ledge now and again
  • J (W?) heeheehee – in Miami this year, whichever fete we went to, the chair was slung on his shoulder  like a shoulder bag.  He drives a HUGE truck and it has no footladder to climb in and I ketch my ass alot trying to get in (but that’s besides the point)
  • K – She always ensures that she is available for me to hold on to; even when i say that i’m okay…because she fears G’s roar.  She also was arrested (okay, she likes to say detained; but it makes for such a better story when we use arrested) because she was arguing with one of Dekalb County’s finest outside a party about a small situation that we were in because of the MS.  I was standing next to them and the next thing i knew, he was hauling her handcuffed ass to the backseat of his car!!!  WDF!?!? 🙂
  • D is no longer in Atlanta, but he is missed…even tho he did watch me fall twice(!) in one party.  In his defense, he was ah lil tite
  •  A is somewhat new to the crew, but sometimes i feel like she is my BIGGEST supporter.  In FL earlier this year, I had a lil fight with the ocean and she was there to ORDER me out – lest the ocean became victorious!
I could go on, but suffice it to say that i really have the best “support group” that someone in my situation could ask for.

I have to mention this…I was raising funds for the MS Walk of Atlanta and I was soliciting funds from someone…The conversation went like this…
Me: Don’t u want to donate?  it’s for a good cause…it’s the MS Walk
C: What??  *$%@** MS Walk?  Why I must give dem my money??  Who we know with that…I not donating to that…
Me: Well….actually I was diagnosed last year
He’s ah red man and he turned even red-DER.  I had a good laugh, he – not so much!  I reassured him that I/it was okay…we had a long talk about it/my daignosis etc but poor fella…to this day, I’m not sure if he has totally gotten over that!

Laughter is one of the best medicines! (No prescription req’d)

Coping

So i was talking to a friend and he reminded me of something i forgot to mention b4…one of the first questions that i asked the Dr. after we chose a treatment was “Do i have to stop drinking???!!!”  Luckily, the answer was no!  I cannot tell a lie, the day I am told that the alcohol will have an adverse effect on my treatment is the day that this shit will become unbearable!!!  C’mon now…let’s keep things in perspective now 🙂

My Poison of Choice

My mother has told me, and of course she’s right…I didn’t buy it, so i can’t return it!  As a result, I have to deal with it.  I have my good days and bad ones- mostly good.
I was a little concerned at the break of 2009 because history has shown that i have major crap happen every 2 years…2003, 5, 7…hmmm, but i’ve been fine this year – apart from the occasional fall, there hasn’t been anything to “write home” about.

Alot of people tell me that i’m courageous – 1 person actually told me that i was her hero (and i was confused when she told me, but then i figured it out).  I appreciate that, but it always amazes me because i don’t think that i’m courageous or a hero; i think that i’m just dealing with a situation over which i have no control.

it Continues…

It was sometime in 2006, i think (i should have started this blog earlier), that i noticed that i was suffering from a syndrome known as Foot Drop.  That happens (with me) when after walking or standing for long periods of time, my feet become so weak that it’s difficult to walk properly.  G and I went to the AIDS walk here in ATL and i noticed that “something” was wrong with my right foot, but i couldn’t really put my finger on what.  G also noticed that she kept hearing a “thunk”/”thunk” as i walked along…and then we looked at my feet the right foot was just kinda “dropping” along as I walked.  She kept telling me to LIFT UR FOOT!  LIFT UR FOOT!!, but i couldnt really…it’s one of the moments that we laugh at now.  I finished the walk, but had to be carted to the car, where she took over the driving.

That symptom has progressed and gotten worse and is the 1 constant symptom that i experience/have been experiencing since.  Now…i cannot stand/walk for very long at all and in fact, my gait is “drunken” looking.  Sometimes it pisses me off because i’m sure that other people see me holding on to people that i’m with, walking funny and they think that i must be tite – esp if it’s somewhere that alcohol might have been consumed.

I am lucky – I have no pain!!!  It’s just a weakness/un-com-fort-able-ness (esp if I’m walking alone) that i know that i have to deal with.  I have since learned my limitations and don’t put myself in a situation that i cannot deal with. 

  • Everywhere we go, i walk with a chair to make sure that i will be ok

Funny story:  We went to DC carnival this year W/O the chair and had to go in search of one at one of the parties…well the only one we could find was a baby chair…J said that he refused to let that happen again!   See below!!
     
  • I use a wheelchair when I’m traveling; much to the delite of any travel pardner
  • I have a handicapped decal in my car (and it can be used in any car that i’m in – again, much to the delite of many others
  • I roll around Kroger (the grocery) in a motorized cart most times; those things are not as easy to drive as u might think!  I’ve had a few close calls…

Acc to someone smart, “it’s time to make this “Kiss Meh Ass” MS work for US now, since we have no choice but to deal with it!”

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