Random Thoughts – Page 6 – Multiple Sclerosis & Me

Whew!

I’ve been missing…for good(ish) reason. The past month has been quite hectic. I had to move, was working on a big project at work and then right after all that wrapped up, had to organise, amidst all the chaos and move clutter, to go on vacation. Everything culminated all at the same time essentially and I really had no room for error and had to focus to get things done correctly. Imagine I actually said “if I had my way, I wouldn’t go on this cruise right now…I just need a 3 months to organise myself”. I pulled off everything without a hitch but my writing suffered and it had to take a back seat for the hour.

I’m going to ease back in and just talk a lil bit bout vacationing – no details or stories just yet. I wish I can go on vacation willynilly (and maybe I can but I’m not that brave). I always think about so many things, namely:
*who, if anyone, am I going with (as independent as I can be, I am always mindful of everyone else around me – I don’t want to cramp their style)
*is the terrain scooter friendly and will I be able to move around?
*what about where I’m staying, will I be able to get in and out of the bed?
*Does the place have rooms with roll in showers? the list goes on.
The struggle is real and sometimes it’s just easier to go home (where I know I’ll be good) or not go to new places -just depends.

so for the past few years ASal has been talking about going on the Ubersoca Cruise and as much as it sounded like it would be fun, I was sceptical. You see, I’d never been on a cruise before and yes, I hear that they cater to the handicapped etc, I just didn’t know for sure. Depending on the situation too, I prefer to be told “yes it’s Stacey friendly” from someone who knows specifically what I’m dealing with and whom I can trust…that’s probably very limiting but it is what it is – maybe one day I’ll let that go, but it eh today. Well she got the opportunity to go last year and when she came back she said “easy peasy for u…won’t be a problem at all!” I signed up for 2019 without hesitation.

I am so very happy that I went; what a time we had! Of course two days before we left, I started worrying about whether we’d specifically asked for a roll in room – did we even need to on a ship? I couldn’t remember…cuz we talked to the organisers in march or something so and here we are in November. Was I making a mistake? Shit…nothing I could do about it at that late stage, just have to go and deal with whatever the universe had in store for me. Well the universe had a bess time lined up and it was a great 5 days. Will I cruise again? Yes without a doubt although after the USC2019, all other cruises may pale in comparison and I may find them quite boring LOL! like i said, no stories just yet but know that they are coming.

will I ever throw caution to the wind and just go? Doubtful. I like to know what situation I’m going into and need to have some understanding that maybe I’ll be able to handle whatever is thrown my way while keeping in mind that with my wretched disease, anything can happen at anytime. Anyhoo, ah gone so till next week…allyuh hold it dong.

CATALYST SPORTS ROCKS!!!

Catalyst Sports

Last week Saturday I had the opportunity to go on my first outdoor climb and I can safely say that it was the best Saturday in a long time. It required waking up at the crack of dawn on a Saturday for me and SD who took me to the meeting site, but small ting. the bus was packed and Huck took off…he drove us the 2 hours to Sand Rock, AL. I think it’s safe to say that everyone who was there had a great time – volunteers and climbers alike.

Kudos to the climbers – Lina, Kim, Cecil, Ashwin, Marjorie, Mike…we need to be extremely proud of everything we accomplished that day
HUGE SHOUTOUT to: Eric, Gillian, Huck, Ira, Megan, Lynette, Mike, Michael B (who pulled double duty), Kristen, Mimi, whomever else I haven’t mentioned by name and all the Wednesday regulars who weren’t there. The things you do and make possible for us is nothing short of amazing. THANK YOU!!!

Enjoy some pictures…

that’s me on the right with Huck, my sideclimber AKA my date

Lina, my hero…i was jealous…i wished i could have climbed this

it’s always me when u see legs kicking out like that…sigh

doh ask where I was…steups…so i missed this

they were nice enuf to let me have my own

…waiting patiently for the next one!

A Lil Trini Speak

Moving from Trinidad to USA was no easy task for me. I remember crying almost everyday during my first year. I knew 1 or 2 people, the place was huge, McDonald’s food was shit (what the hell was all the hype about), money was all the same colour, Spelman girls were too loud and good Lord, are these people even speaking English (I hate the southern accent)? …and it hadn’t even gotten cold yet cuz I came in August. There was a lot of adjusting to do…and then of course, I’m sure that all of us at some point had to deal with the “do you swing from trees” or something along those lines questions. All of that coupled with the fact that the only experience I’d ever had with America was Disney at a young age didn’t make things easy. I’ve been here 28 years now and after all this time, all the ups and downs, adjusting to the American culture, Trinidad is still my home. I never refer to Atlanta as “home”; I’m a Trini girl thru and thru.

In my opinion, one of the biggest adjustments we have to make is the way we speak and I’m not talking specifically about our accent; it’s the terms we use (hell, u see I’ve had to create a Trini dictionary on this blog cuz so many of the terms we use make sense only to us). Some of us come here and turn into what we refer to as a “fresh water yankee”… in other words they come here and develop a thicker, stronger American accent than people born and bred here. Some just develop a slight twang of sorts, some just conform and start using American terms or pronouncing words how they do and i would say that it’s, for the most part, all in an effort to make life easier for us. At some point, u get tired of not being understood and having to constantly repeat urself (to this day every time I say “the first” of the month, people think I’m saying the fifth). I speak much more slowly than I used to and I pride myself in still having my accent although maybe it’s not as strong as it used to be? I remember one time being so insulted when a cousin’s spouse told me that they didn’t think I was from Trinidad -coulda bitch slap that person right there and then. I always give one of my good friends a hard time when we go out and he asks for “war-derrr” instead of “war-tuh”. One time daddy went to a store to buy AA Duracells and he eventually got tired of not being understood as he was saying “bat-trees” so he asked for a “badder-ree” and he was pointed in the right direction.

I never really appreciated the things we say and how we speak until I left because up till then, everything was just normal. It wasn’t till I left that i realised that the things we say/words and phrases we use are foreign to other people especially here in the US. These days I can honestly say that I LOVE how we speak and all the various terms and expressions we use. Moving around in our daily lives, as we do whatever we do, it’s not easy to spot another Trini but from the time they open their mouth to say something? we know – and it could be the accent or simply something the person says. So one day I went into Shepherd for my therapy and there was a lady sitting there waiting too. She was on the phone, I heard her talking but i paid her no mind…I eh go lie, sometimes I get curious of people’s stories…did they have MS? How long? What was their progression? especially depending on the state of their disability…but that day, I was in my own world. Then I got a call, had my conversation and hung up…And then I heard, “so which part yuh from and how long u dealing with this schuhpid disease?” Wha? You see, “which part” and that pronunciation of the word “stupid” is all us. Where did this person come from? It was the same lady (she’d been behind me the whole time)…hearing her on the phone before, I would have never pegged her as Trinidadian. I smiled…u see it’s always good to discover a “kindred spirit” ..and we exchanged a lil small talk about being diagnosed, not being at home and dealing with our mutual schuhpid disease before Rebecca came to get me.

that’s it today…nothing really ms related. Allyuh have a great week, ah gone so!

Adaptive Sports

As u know, I’ve been rock climbing since last April. I’ve missed a few weeks recently because of work, because of life and well because at the end of the day, it is a workout and every now again, I just don’t feel like going – it is what it is. As hard as it is, I really thoroughly enjoy it although sometimes I can’t help but feel badly for the person who is side climbing with me at the time. Those volunteers deserve awards because dealing with my left hand and arm and, every now and then my left leg, is a mini workout itself. Side note:when Rebecca evaluates and measures my left hand grip, the scale barely gets a reading, but i’ll bet that if she were to measure when one of Catalyst volunteers is trying to pry it open to grab a hold on the wall, the reading will qualify me for American Ninja Warrior…but as usual, I digress. I’ve come to realise that I’m glad that I never started rock climbing before. Hear me out…

Years ago, G and i started yoga. She absolutely hated it and I absolutely loved it. Thinking back, one of the reasons that I loved and looked forward to the class was that it wasn’t ur typical workout with machines and reps and weights and blah blah blah. It was (for me) in the same category as dancing because I was getting exercise in without its feeling like a workout. Attending yoga class was the one thing I did religiously…until I didn’t. lol. Anyhoo, as ms invaded my body and things started changing and I realised that there were things that i just couldn’t do any longer, i discovered adaptive yoga. I contacted the lady who taught it and she came to the house once (can’t remember y it was just the one time but it might have simply been a scheduling thing cuz she came during a workday). We kept in touch and at some point, she told me that she was going to start a class after hours, was I interested? Hell yeah! Sign me up…

If I’m remembering correctly (which is debatable), I think I went to 3 classes. I re-read this post and clearly I wrote it after the first class because eventually, I really, really disliked it – it was actually depressing. I couldn’t do the simplest things and on top of that, even though there were other people in the class, I felt like I was the worst and struggling with everybloodything the most. It was a constant reminder of things that I could no longer do – I was completely disinterested.

Admittedly, now that time has passed and we have (kinda) learned to live together comfortably, no not comfortably…without as much conflict, maybe I will revisit? No promises although I told Taylor that I’ll incorporate her Pilates classes at Shepherd next year (even got Dr. Gilbert to write a prescription for it so that I can pay with my FSA card).

I really believe that had I started rock climbing as an able bodied, normal person, I would have felt the same way about it. Sometimes I look at other climbers and I wish I could scale up the wall like Spidey too but I am not discouraged by it and it certainly does not depress me, the left arm/hand annoy me when they don’t corporate and I cuss a lot (and apologise for it) but I’m not discouraged. Luckily I have no reference point and have no idea what that’s like. So I keep going at my speed doing as much as I can all the while willing that hand and arm to stop acting the fool and just relax a little and open up for us so I can grab the blasted hold.

Allyuh hol’ it dong…till next week!

Falls

Indulge me…this will probably be a long post.

It’s unfortunate that falling down has become “par for the course”/“the status quo”/all those kinda phrases for me. It’s something that I hope doesn’t happen but occasionally it does. There were times when I knew I was doing shit that could end badly but i took a chance anyway and there were times that i fell and i couldn’t explain what the hell happened. Because they are “part of my life”, I’ve come to realise that generally they are more traumatic for the people around me (if I’m not alone) than for me. If I realise that it’s going to happen, I usually try to keep my head from hitting anything (I really do hold it up and out as best as I can), hope for the best and when I’m down, the goal is get back up and keep it moving. It’s happened more times than I’ve liked over the past year but i won’t bore u with details except for a baddish one.

I love both my scooters…for different reasons and eventually over time, I learned which one to use based on where I’m going, what I’ll be doing etc. So last month, OP stopped working – it was actually a scary situation cuz I bounce starter and pressed the control and he went nowhere! anyhoo, that’s not the point of this post – and I had to use Bumbleebee for everything for 2 weeks (not the best scenario but i didn’t have a choice). Now Bumblebee is not the stablest of scooters so when I’m using him, I don’t turn corners at top speed and if I have to go over a hump or anything, i don’t go at an angle, I approach it “head on” and slowly.

It was after an Atlanta United football match last month, so I was downtown by the stadium and there were hoards of people around and traffic everywhere. I was driving Bumblebee on the pavement and entering a crosswalk to cross the street (that’s another thing…I don’t play with crossing streets; I always use crosswalks and I always wait for my green light). I guess I misjudged or didn’t realise(?) that the crosswalk wasn’t evenly built (so there was a hump somewhere) and the next thing I knew was Bumbleebee was tipping over! Fuck!!! I ended up in the road, the concrete road…I really cannot give u a whole lot of detail but I know that I looked up and there was a circle of faces looking down at me…I outstretched my arms and some people helped me up. I don’t know who righted Bumblebee but he was already upright by the time I was. I didn’t know it at the time but Babs was behind me and between she and a random lady who had seen everything play out, the cops showed up (it was after football so they are everywhere), EMTs and ambulance was called and my forehead was cleaned up because apparently I was bleeding…I had no idea that I was. While the cops were taking my information etc, I felt my watch vibrating but I ignored it and soon after I heard Babs talking to someone saying, “yeah…she did…she seems alright…we’re waiting for the ambulance to get here.” I was confused wondering who she might be talking to who already seemed to know what happened. Longer story short, I ended up leaving before the ambulance got there; they were taking very long because of traffic the cops said. The bleeding had stopped and it was just minor scrapes so I didn’t need stitches…I decided that I’d take responsibility and go home.

I found out that it was K who’d called while everything was going on and it turns out that she and ASal had gotten text messages sent from my watch that “Emergency SOS – Stacey appears to have fallen”. At first, I was flabbergasted and then looking thru my watch settings, I realised that I had listed them as contacts for such an emergency. After that I really remembered that that feature of the Apple Watch was a factor that played into my decision to buy it. WOW! Guess it works…it’s unfortunate that a disaster had to occur for me to know that it works and I hadn’t just tested it out. All in all, as bad as everything was, it could have been a helluva lot worse. These days, all I have to show for it is a small bump on my forehead where I was cut, it’s so small that u can’t see it but u can feel it if u pass your hand over the area, and I did not scar.

Sigh…I eh go lie, I don’t like to call that a fall…I prefer to blame it on Bumblebee and say “the scooter tipped over” but regardless, the outcome was the same…I ended up in a horizontal position…in the road no less…when I should not have been.

Allyuh have a good week,
Stax

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