Random Thoughts – Page 9 – Multiple Sclerosis & Me

Well yes…

SIGH! After I published my last post about Shurlan’s ral (a term coined by some members of my family after my grandmothers funeral – they crazy…go figure 😊) I reread it a couple times, looking for errors etc and an overwhelming sense of sadness came over me. I was:
*sad for Shurlan
*sad for J,DeeJay, Dom, Devon
*sad because dr. G was moving back home in 2 days and I’m going to miss him tremendously
*sad because…life…and I have to deal with my wretched disease ALL THE DAMN TIME

it all came crashing down on me all at once. For the first time in a long time, I felt really alone and didn’t want to go thru it all by myself. I called CYute and we made plans to lime. I don’t think he will really understand how much I really appreciated and needed that lime that night.

anyway…so I went home on July 3rd for 10 days. Heading to Trinidad from Atlanta is not the easiest thing to do. There are no direct flights so we have to choose if we want to go thru Texas, New Jersey or Florida. I chose Fort Lauderdale because the airport, cost and schedule were ideal. When I’m travelling with my scooter, I’m on my own – I have no assistance from the wheelchair attendants in any airport. Ramp guys bring the scooter for me when we land and I bounce starter and take off to where I need to go. Landing in Fort Lauderdale on my way back was no different; I got on Bumblebee and started making my way to Customs.

I don’t know if u regular folk ever noticed this but elevators are always in a different spot than escalators that u use and that path is always less travelled. So I was heading to the elevator and bumblebee just stopped. Ah sheeeiiit! My knee usually rests near to the power switch so I hoped that maybe it bounced the switch and turned it off by mistake. I flipped the switch and still…nothing! I flipped it about 4 times to make sure I was seeing correctly and yes, the battery gauge was not moving (the indicator that the scooter is on).the battery was fully charged…that wasn’t the problem (this had happened before but both times I got him going again…after a long time. I didn’t have that time right then). i didn’t know what the hell to do (I haven’t mentioned that I was beat because my flight from Trinidad had been delayed 2 hours). I looked toward the elevator and there was 1 wheelchair attendant there pushing a passenger. Now u hadda understand, these attendants are essentially assigned to passengers who need assistance and remember that’s not me. Shit! Luckily for me, the fella was very helpful and the passenger he was pushing didn’t have a connecting flight and wasn’t in a rush. He left and found a supervisor who’d seen me deplane and who, realising my predicament, brought another chair and told the fella to push us both to baggage claim where he would tell the ramp guys to take the ‘bee. I eh go lie, as frustrated as I was about the situation, I was glad that I was in bumblebee cuz the way he folds up, it was much less hassle to move him around. By this time, I’d missed my flight to Atlanta so I had to call GHK who luckily had nothing going on that night so she could pick me up. I really cannot get into the all the details of everything else that happened in the airport when we got to baggage claim but it included my sitting in a chair (that I can’t work) for what seemed like at least an hour and waiting on the wheelchair fella to square away his original passenger and then come back for me. It was torture…I was frustrated, I was tired, I was hungry, I wanted to get the hell to Atlanta and most scarily, I wasn’t mobile.

finally I got by GHK and more drama. Every time I go by her I use a walker cuz of the layout of the apartment complex and the apartment itself. Well this was not a planned visit, so I had to hold on to both she and Dx to get to the apartment and when inside they decided to put me in a folding chair that they dragged to and fro…sigh; it was a rough night to say the least. My original flight would had had me walking thru my front door about 9 on Saturday night…instead, I walked thru my door at 9:30 Sunday morning. There’s good news…apparently there was a blown fuse in Bumblebee’s guts that has since been replaced so he is as good as new.

All’s well that ends well I suppose. I’ve had nightmares of not having my scooter and the shit actually came true. I can safely say that I don’t ever want to relive that ever again.

hol’ it dong, Stax

Goodbye Shurlan

I said goodbye to meh boy Shurlan yesterday. It still is all surreal to me; I still can’t quite wrap my head around the fact that he’s gone – completely gone. After attending a funeral last year, I made a conscious decision that I don’t want a funeral; it just too somber, too sad, too drawn out and I don’t want that to be everyone’s last memory of me. Well after attending Shurlan’s funeral I realised that they do not have to be sad and somber etc. and if I change my mind about having a funeral, his is what I want mine to be like. Remember that this is only my opinion now and if I sound harsh/heartless I apologise. In the church there were no reminders beyond the obvious (that we knew that we were there for his funeral) that we were there for a funeral. No casket, no pictures of him at the entrance of the church (pictures always get to me), no pictures of him in the program, no eulogy. The priest who officiated knew him personally and so when he gave his sermon he punctuated it with actual stories/jokes etc. The only time we saw a slideshow of pictures of Shurlan was at the very end after the service in a hall next to the church where refreshments were being served…I really appreciated that… it made it a little less sad for me. Everyone was grieving of course because it was a sad occasion but there were no reminders everywhere we looked.

Today is Friday and I had plans of publishing this post this morning because I started it last night, but alas in the middle of typing it I got another call that someone else had died. At this point, i eh go lie I am so very tired of death it’s not funny. J’s mother died last night and he called me and I changed all my plans to ensure that I was available for him and his brothers for however they needed me. They are the little brothers (I’m the eldest…they are all my little brothers…regardless of size lol) that I never had. Steups

after the church service we went to Shurlan’s house. I don’t know how/when the Trini thing of drinks/lime/music/good times after someone’s death started but I’m sure that it is done so that just for those few hours, the family members and those left behind can forget about the sadness and reality of the situation and just have a good time. We were “Jammin Still” as the “happiest people alive” throwing “Splinters” on the bottle and spoon with the iron man…it was a great send off. I eh go lie though, I got the most emotional when the bikers showed up. Shurlan was a member of a motorcycle club and when they all showed up, the music was cut and for 5/10 mins all they did was rev those bike engines…it really was too much to handle for a number of people who were there…just experiencing that brotherhood sigh!….Shurlan meh boy…ride hard, ride fast, ride in heaven where I know u are.

Thank you for indulging me for the past couple posts…I guess we’ll be back to ms next time because, of course, I have some things to talk about.

No…no…no

I’m beginning to think that I should stop travelling in in July. Last year I went on vacation and came back to 3 deaths. This year I went home for my 30 year reunion from high school and 4 days after returning, I learnt of the devastating news that a friend was killed in a motorcycle accident that morning. A car turned into his path and he died from his injuries. I’ve since heard that apparently the driver was arrested.

Shurlan was not someone with whom I spoke regularly, but he was one of those people I knew I could reach out to in certain situations and I could trust that he would steer me right. We didn’t see each other often but when we did it was genuine happiness on both sides. We actually grew up a street apart in the same neighbourhood but he was younger than I so I barely remember him from there. Our mothers played hockey together and to me that’s how we knew each other. He moved to Atlanta in the early 2000s (I think) and it was right here that he died. He was a man on his own beat. One of the things I always admired about him was that he always did his own thing and he didn’t seem to give a fcuk what anybody thought about him. He did his thing and marched to his own drum…in the words of another friend “he had a flare about him for the wild side” and another, “all the tings I was too scared or self conscious to do, Shurl do”. Lol that really sums him up nicely. He was a genuine character who told it as he saw it and kept it real and I’ve heard that sentiment iterated by so many people within the last couple days.

its an odd thing for me. As soon as I turned 40, I began thinking about death more than I’d like to admit to the point that I remember having a stern conversation with myself and said, “SELF. U really need to stop with this shit. Next thing u know, u call it on urself! stop it!!”…I don’t do it as much these days but anytime one of my peers/friends/someone close dies, I think about my own mortality and I always think about their last moments…were they in pain? Did they know what was happening? Were they even awake and cognizant at the time? I can’t help it. At risk of sounding very cliched, we really must live like there’s no tomorrow. I think this is worth reposting:

This is my favourite picture of Shurlan that I’ve seen floating around Facebook. Goodbye my friend, u’ll be missed by many. It appears that he was in a motorcycle club and I pulled it down from one of their posts.

Blog Life Cycle

The other day I was thinking about the transformation of this blog and I realised that it has pretty much ridden on the same MS roller coaster that I’ve been riding over the years (not too surprising I suppose by virtue of its name alone).

I didn’t start it until almost 5 years after my diagnosis (2009) so I was sharing everything I’d experienced to that point from memory. Additionally, I was writing every week day; I’m still amazed at that. Maybe I was really making sure that I captured everything before it flew out my brain? Who knows but everyday without fail I published a post. Back then, I was always nervous about my writing and usually felt self concious about sharing (still do sometimes). I’m sure that G got tired of me during that first month or so because I always asked her to read a post before I published it and then the first time I didn’t ask her, I was a bag of nerves. Why? Who the hell knows…go figure. I always worried when I started the day not having anything to talk about, and then somehow I’d think of something and the words would just flow. Even though it was 5 years after my diagnosis, the MS had just started rearing its ugly little head as a somewhat regular fixture in my day to day life and that was something that I had to get used to. It wasn’t until 2007 that I had my most notable exacerbation that lasted 6ish months and since then my physical disability…well u know the story. I had 2 years of blissful ignorance of what was to come.

Prior to that, I don’t think that I was affected much, so I guess you can say that I started the blog at the right time. After I started it, I had a number of medication changes and always had to go thru the process of verification and insurance coverage etc so I shared all of those woes (a saddist who asked me if my name was my real name, a doctor who insisted on marrying me off no matter how many times I corrected him) and dosage issues. Everything was always trial and error and there was a lot going on. Additionally, I had to come to terms with cohabiting with the always-present multiple sclerosis and learn how to share my space with it. It was a constant tug of war with my trying to figure out and understand my new limits and finally facing the reality that life as I knew it was no more; that in itself came with drama and stories galore.

I’m not sure when but at some point, I started giving myself a break because I realised that there was no need to publish daily – that was just extra pressure that I was putting on myself. Then sometime in 2014, I took a turn for the worst (physically).i was still writing but the posts were few and far between and by December of that year, I could no longer write. Even though I hadn’t had an exacerbation per se, my physical disability had worsened and I wasn’t sure just how to handle things. As I suffered, so did the blog because I didn’t publish anything again until June 2016. At the time, I just couldn’t handle writing about being sick anymore and especially about getting worse – putting it in writing just drove the point home that once again, life as I knew it was done and changes needed to be made. Writing around that time didn’t bring me any joy and I just couldn’t do it any longer. Was that a bad or wrong thing? I don’t know but it was what I thought was best at the time. A month or two prior to my starting back in June, I remember that ever so often, I’d think “that’d be a good blog post” and then realise that “oh I’m not writing these days” hmmmm.eventually I really started missing it and I had to start back.

These days, the ms (I don’t always like to give it importance and capitalize; leave me alone, it’s the little things) is stable and quiet-knock on wood-and posting daily is definitely a thing of the past. I don’t like its presence but I’ve learned how to live my life with it’s being around all the damn time and I have little choice but to accept that I have to share my body. I have little drama and there’s just not that much going on (a very good thing if you ask me) for me to talk about hence the reason that I post weekly. There’s no more trial and error with medication; I have the perfect combination of all tablets and CBD oil now (cept for the thyroid tablet cuz my thyroid still eh know what to do with Lemtrada). I know that my pill cocktail is correct – it’s only 2 in the morning and 2 at night – because if I miss either dose, I’m a lil out of sorts (functional but definitely not normal)until I take them. It’s always a relief to be moving around stiffly or out of whack and then discover that I forgot to take pills. I do have to deal with one “symptom” (why can’t I ever spell this word on the first try? ever??????) and I’ll talk about it next time but it is more of an annoyance than anything else.

Anyhoo, FYI…I’m out of here next week Tuesday so I’ll be M.I.A. for a few weeks so allyuh hold it dong till I reach back.

Stax

Catalyst Sports

This is the name of the organisation that is “dedicated to providing adaptive adventure opportunities to anyone with a physical disability“. The Atlanta chapter provides cycling and climbing opportunities and I have been rock climbing with them every Wednesday night. It’s adaptive climbing so they strap me into a pulley system to assist me while I go up the wall and, while a “regular folk” person would normally only need one person to belay (the spotter, if you will, for someone who is climbing), I require 2 – 1 belayer and 1 person working the pulley. Dom has been taking me and he’s observed that they are not working as hard as they did that first day…I’m not convinced. They also have a piece of equipment called the Wellman (system?) that is like a chair (also fitted into a pulley) that someone can sit in and pull themselves up to the top of a wall. The system hangs freely from the top of a wall (it’s not against it) because I suspect that it’s what someone with no or limited lower body strength can use to go up. It doesn’t require actual climbing, u use ur upper body to pull up to “climb” to the top. I’ve used it a couple of times too and I think that I’ll alternate between it and actually climbing the wall weekly. Additionally, one week Huck climbed with me – he was my going to be my “left side” if you will. We got real close real fast…lol. Turned out that he was more than my left side but it worked out very well and we had a great time that night.

you know I have my spiel to explain my issues and I’ve gone consistently enough that the volunteers who are have been there weekly know what I have going on. The first time I used the Wellman, Huck asked me if I wanted to use a strap for my left hand that essentially keeps it in place around the bar that I had to grip to pull myself up (u’d think that because it curls up, it would do so around the bar eh? no that would be too logical…it’ll curl up tight and probably end up on top the bar rendering it just useless). It was very overwhelming for me because I thought, “shit…they have thought of everyfrigginthing!” and I remember blurting out how happy I was that they were in my life…smh. I don’t know who started Catalyst Sports, but boy am I glad they did and I am exteremely grateful for the volunteers who are there every Wednesday night without fail and who are willing to put up with me and my curling left hand, my stubborn left leg and my consistent cussing. My hero days are but a distant memory but when I’m climbing on my own and trying to get the hand or foot to a grip in the wall expletives tend to fly out my mouth. I always have to remind myself that I have limitations and may not be able to do whatever like regular folk, so I need to adjust because generally I don’t remember and that’s when shit starts flying 🙂

anyhoo, enjoy some more pictures…

Grit and determination going up on the Wellman

See the that black thing to the right of my face? that’s the strap around my left hand

Allyuh hold it dong till next time – ah gone so!

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