Category: Out & About

M.I.A.

I’ve been M.I.A. and I just cannot believe that so much time has gone by since the last time I posted – not sure where it went but I’ve had alot going on. I’ve said it once, I’ll say it again “the older I get the faster time flies and it sucks!” I actually had an idea for something else, but I’ll table it for now because I have to speak to this. First off, I’m not going dark again…I will continue to write and publish, I really honestly didn’t even realise just how much time has passed since my last entry.

This past Sunday was the annual “Men Who Think They Can Cook” event in ATL. I’m sure that I’ve written about this event before, but it was brought into fruition by one of the old heads here in our Atlanta community (she will kill me for calling her that, but it’s fine I’ll take meh cuss). I moved to Atlanta in 1991 at the mere young age of 19 and for the first 3/4 years or so, I knew very few Trinidadians and then one day I had the privilege of meeting this lady (I wish I could remember how we met), P. Ram. And all of a sudden, I was exposed to a Trini community that remains my family outside of Trinidad to this day. These people didn’t know me or any of the other students who came here to go to school, but they knew that we were young, students who left their parents’ homes and pretty much had nothing and that was all that mattered. They welcomed us into their homes, their lives and we became “their children”. Now that we have grown up, when we get together or see each other, it’s a beautiful thing. So much time has passed and it’s hard to fathom that they were around my current age when we first met…WHA?!? P. Ram is called Aunty P by EVERYONE…and I mean EVERYONE. She is a pillar of strength in, and the glue of the community and all she has to do is say something or ask for something and it gets done (she also has a nickname “Queen of the underworld”, but you didn’t hear that from me…heeheehee).

I don’t quite remember when she had the idea to start the “Men Who Think They Can Cook” event but she started making phone calls to all the men in the community and pitched the idea which was a cooking competition amongst the men. Each chef comes out with their food which is then sold to attendees and a portion of the proceeds is donated to a Multiple Sclerosis organisation on my behalf. It’s an MS awareness, fund raiser that is done because of me for me and it is very touching to me every, single year. For the first number of years, I told her to work with the MSCA since I was a patient there. I am no longer affiliated with the MSCA (story for another day…one of 2020 happenings) and so this year, I told her to work with Catalyst Sports. I was extremely happy when Gillian from Catalyst agreed and was available to come out to support as well. This is one of those times when the “old” old people, the “current” old people and the “current” old people’s kids come together and have a whale of a time eating GREAT food, drinking and limin for hours. I feel confident saying that everyone looks forward to it year after year.

I don’t usually say anything at the event, but this year I wanted to and felt that it was long overdue that I thanked Aunty P. and her organising crew, the chefs (repeats and new…in fact I believe that the winner this year was a newbie), all the supporters who came out and of course, Catalyst – meeting that crew is one of the highlights of the past few years for me. It is always overwhelming to see the support, feel the support that I have in our community, and I just needed them to know how grateful I am.

  • This year’s winner
  • Best Presentation, #1, #2
  • Organisers M and Aunty P, last time’s winner,
  • Catalyst in tha house!
  • trophy and all
  • winner
  • serious ting

High Maintenance

I was never a girly girl. I didn’t need 2 hours to get ready for anything – especially when I had the “come to Jesus” moment and realized that hair on my head is overrated and completely unnecessary. I could be ready to do whatever at the drop of a hat. Anytime J told me that he was picking me up at 5 (and I learned that unlike a lot of Trinis, when he said 5, he meant 5), I was ready to jump in the car at 5. I wear makeup but it is not a shitload of gunk on my face and so the time needed to apply it is minimal. I could go on…but you get the gist and long story short, I was never a “high maintenance” person. That is…until now. Steups. I always say that multiple sclerosis has made me so damn high maintenance that it’s downright annoying. Everything has to be “just so” or “just right” for me to indulge/participate etc. I cannot do everything willy-nilly like I used to anymore – I’ve talked about the due diligence steps that I sometimes take before – not getting into that right now but the shit gets tired.

Sunday was the regular monthly bike ride with Catalyst. J and I usually go down together because he rides the same trail that Catalyst uses. It’s always from 10-12, so we get there at 10, he leaves to go do his thing and by 10:30, I’m “gearsed” up, on a bike (read MY bike) and ready to roll with at least one of the Catalyst volunteers. Catalyst has a fleet of adaptive bikes (hand powered, foot powered, upright, recumbent…you name it, they have at least one) and through much trial, error, frustration and a lot of cussing, I finally found the best bike for me – hence the “MY bike” description prior. It’s an upright, foot pedaled, nifty lil thing – it’s too low to the ground for me to get in and out of on my own but everything else is “just right” for me to get a good ride in. Last month, I did 3.5 miles and I was BEAT by the time I got home, but it felt so damn good. Anyhoo, Sunday was a little different because he was going to do a 60mile ride, so I didn’t get there till 11 and so, by the time I got there, MY bike was gone. Here’s where the high maintenance frustrations came in. My bike is compact so when I sit on it and start pedaling, my legs remain bent (even at the greatest angle); they never actually stretch out enough to the point where it’s difficult to bend my left leg (that likes to be stiff and straight out) and bring it back in. The first other bike I tried on Sunday was long and stretched out so you know what happened. I had suspicions, but figured I’d try anyway but after 2 rotations, that left leg straightened up and I had THE MOST DIFFICULT time bending it to bring it back in – I don’t even think I made 1/2 mile. Writing and describing the problems with the second one will take too much time and words but suffice it to say that I rode even less than the first. It was annoying, frustrating, depressing and I always feel bad for the volunteers with me, even though they have always been good sports about everything. I’m not going late ever again. Truth be told, I really want to put a “StaxBike” license plate on it, but I guess that is not acceptable and might be frowned upon 🙂

In other news, I’ve started experiencing a weird pain. and by weird, I mean really weird. I’m not trying to be dramatic here but imagine someone took the divider or compass from your geometry tin and jammed it in your armpit and then dragged it down your arm to your hand. It’s a jolt of pain that starts in my armpit and travels very quickly down my arm. I’ve never experienced anything like this before, in fact never any pain at all. The first time I felt it was April 8th (a Friday) and it happened once a day till the Sunday (odd). Didn’t feel anything again until last week but now, it’s happening multiple times throughout the day and even at night. At this point, it’s more annoying than anything else, course it’s painful too but I think that because it actually only lasts a few seconds at a time, I don’t have enough time to study the pain. I also can’t pin it down to my arm being in a certain position or figure out any kind of explanation at all, so I just have to suck it up and keep it moving – ugh! I actually have a doctor’s appointment later today so I’ll bring it up and see what suggestions he might have. Another MRI might be in order…is it a new lesion? If that’s the case, do I have to live with this? Geez…I’m not really looking forward to what he has to say I don’t think. Anyway, more to come I suppose.

MS sucks!

Travelling while Disabled

3 women say they were abandoned by wheelchair workers at CLT | 13wmaz.com

The struggle is real. Lumy shared this story with me last week and it struck a chord with me for a number of reasons. Last weekend I travelled from the Charlotte airport to Atlanta and I was struck by the poor experience I had. Unfortunately for all the airports thru which I travel, I live in Atlanta and the Hartsfield Jackson airport is as far as I am concerned, the gold standard of airports and all cities should strive for the model used in ATL. ATL is (annoyingly) HUGE, is always under construction somewhere, somehow and at any given time there are always 5,000,000 people passing thru but believe me when I tell you that shit is efficient. Queues are constantly moving, there are signs EVERYWHERE so you definitely know where to go and the shit just runs like a well oiled machine. Maybe I’m also spoiled because there are “Special Services” queues everywhere and every step of the way…but then, it’s not like ATL is the only airport with “my” lanes. As a result, it annoys me to no-end when I go thru a schupidy, rinkydink airport that is quarter the size of ATL and my experience is sub par at best.

In CLT, I had to go thru the normal queue where there were 1000 people AND their luggage – rolling thru the tight queue lanes in a scooter or even for someone pushing a wheelchair is not easy, especially when bending corners – I always have to hope that I don’t ride up on the pole base; worse yet if I happen to have my luggage trailing behind and it rides up on the base and ends up at a silly angle so it’s twisted, increasing the potential to fall over…and…and…u get the drift. Then I get to the top of the TSA line and when I say the lady was barking at people, I really mean barking – she was horrible. Since I don’t walk thru the scanner, I always have to wait for someone to escort me and long story short, by the time that asshole came, I ended up barking right back at her too. I’d ended up telling them 3X that I couldn’t walk (side story about this…it took me a long time to come to terms with the fact that for purposes of going thru TSA security, I needed to say that I cannot walk – talk about a psychological hurdle); and I had to deal with her attitude making the assumption that I could walk because she saw me standing on the scooter. I was irritated, pissed off and needed to get away from these people before I started spewing bad words.

Back to the ladies’ stories. I cannot begin to explain just how happy I was when I found out that I could travel with my scooter. It affords me so much independence and because I use the scooter, I’m just a regular traveler because I don’t need wheelchair assistance, so nobody looks at me twice and I do my thing. Once pre-scooter, the wheelchair person rolled and left me at gate B12 (I had gotten out of the chair) and then the gate agents announced that the gate was being changed to D15. When I asked the agent to call for a chair for me, she looked at me and said, “What??? You can’t walk?” The other problem for me being in a chair is that I can’t work those things! Reading their stories, it’s quite possible that they couldn’t either. People using wheelchairs make it seem so easy (to me) but I’m assuming that comes after practice and therapy. Whenever someone remarks about my scooting skills, I say, “unfortunately I’ve had years of practice” and it’s true – I knocked over shit, rolled over people’s feet (this really happened in the airport once…it was a lil boy and I was mortified but he didn’t react, so I kept it moving) and drove way too fast ALL the time in those early days. Some might say that I still drive too fast now, but at least I know how to control Optimus et al vs. the other way around. Even before I had a poc hand and a spastic left arm and I tried to roll a chair where I wanted it to go, I couldn’t…and it was one of the hardest things I’d ever tried to do. So, couple the fact that you may not be able to work the chair with the pressure of having to pee? Gracious! I cannot begin to explain to you just how frustrated/annoyed/upset/all those sorts of words they probably were.

The airline, airport and wheelchair company “powers that be” should be ashamed of themselves and need to do better. There’s no excuse for what those women went thru.

Anyway, till next time…allyuh hol’ it down.
Stax

Club ’72

This year marks 17 years since I was diagnosed, 25 years that I’ve been working for the bank, and I still can’t believe either. This year was also one of those milestone birthdays that I’m still a little confused about. Where the hell did the time go? As I’ve gotten older, I’m much more aware of my mortality but I cyah tell a lie; while I am extremely grateful to be around (Lord knows I have many peers who are not), I haven’t quite grasped the idea that I am the big 5OH! When? What?? How??? Dealing with ms (and even the ‘vid over these past 2 years) has taught me more than ever that stressing about things over which I have no control makes no sense. I can prepare for the future, and I’ll hope for the best but because I just don’t know what the disease has in store for me or what trajectory it will take, there are things that I cannot plan for or worry about because I will go mad and potentially miss out on life. I can put my affairs in order, stay as active as I can, eat “properly” (for the most part) but I don’t spend time thinking about whether there’s going to be a day that I cannot live on my own or that I cannot walk anymore or that I cannot do the things I enjoy doing today because that worry and stress is not worth it. I live in the moment and focus on what I can do today. Now more than ever, if I want to do something and can afford it within reason, I do it. Life is just too short and u never know what is around the corner (heard the perfectly awful story of that the other day). A lot of my peers are members of club’72 and so I’ve been going to birthday parties and reconnecting with peeps. That coupled with the fact that we’ve been cooped up for the past 2 years makes 2022 a grand old time so far. My friends and I clean up well, we look great and we know how to party and have a good time!

All Club’72 & (1 or 2) Honorary Members
  • Gift1
  • Gift2 – “f*ck 50” in Morse code
  • Stop 1…
  • Stop 2…party done!
  • BigRed. IYKYK!

Catalyst Sports

It’s been a while but I’ve had some long days at work and just haven’t had time to post.

The Catalyst Sports organisation is one of my best finds ever. I’ve talked about Catalyst before – this is the group with which I am able to rock climb. The group affords people with disabilities to enjoy/participate in different sports that we would not be able to under normal circumstances. I started rock climbing in 2018 and we would meet every Wednesday night for indoor climbing and I was even able to participate in one outdoor climb that was an amazing experience…but then, covid came along and everything shut down, including the gym. Rock climbing was out, at least for the hour. Mid 2021, the gym re-opened and eventually Wednesday night rock climbing resumed but at the time, I wasn’t comfortable yet. It was around that time that meh boy J started cycling and I remembered that the Atlanta chapter of Catalyst has a cycling program – I looked into it.

They offered hand pedaled and foot pedaled bikes and I was able to rent one on a monthly basis if I wanted. I thought about it and as much as I wanted to use the foot pedaled, I decided it might be best to go with the hand (a little back story – there was a time when I felt comfortable using a stationary bike in the gym and then I had 2 falls after using it (the last one resulted in a black eye) and that was then end of stationary bike use). Fast forward to 2021 and I decided that I’d rather be safe than sorry so I went with hand pedaled. The issue that I knew I could have is that the bikes are low so getting on and off by myself would be close to impossible BUT maybe I could ask my personal trainer to help me and we could incorporate bike riding into our weekly routine – I had a plan. Well, u know what they say about the best laid plans – sigh, altho I did get a chance to ride in Piedmont Park one Saturday. As it turns out, a few months later, Catalyst started monthly group bike rides and I was able to take advantage of those – for $10, I could rent a bike and ride with a volunteer or 2 on one of the bike trails in the area.

It was while on the last of those rides where I was really struggling with the hand cycle – u see my left arm is spastic too and (especially) when I need/want to use it, it tends to lock up so I don’t have the arm span that I have on the right side. That day I was REALLY struggling and it was getting me upset so I told Brad, the volunteer who was with me to forget it – I had taken soooo long to ride 1/4 mile, and he suggested that I try a foot pedaled bike. I was skeptical because at the end of the day, I would still have to function at home but I figured what the heck; I’ll give it a shot. Well it turned out that it was the best thing; I took 15 minutes to ride the same distance that took 45 on the hand cycle. I was ecstatic – hey, it’s the little things – and I refused to think about what the situation might be at home. When I eventually got there, I took it easy and happy to report, I had no drama; I’ve already signed up for next month’s ride and can’t wait to get back on to see how far I can go. On that same day, I found out that they were getting ready to launch the kayaking program and I can’t wait to try that out even tho I’ll probably have the same arm challenges, but we’ll see.

Anyhoo, I’m in Trinidad as I write and I have Mackeson to drink and good food to eat so I gone so but first…a few pictures.

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