Out & About – Page 7 – Multiple Sclerosis & Me

My Elite Group of Friends

I have an elite group of friends within my inner/outer circles. These are the ones who have “thrown me down”. Of course no one has thrown me down, it’s just a joke. They were the “lucky” ones I was holding on to when my feet got tied up or I lost my balance or who the hell knew what happened and I went down. I’m not going to call anyone out except this person and if I get cuss, I’ll take meh cuss like a man because it’s all about showing my love 🙂

it was labour day weekend in the US (September 4th). G2 and family were here and that Sunday, we went up to lime by the man made beach in Lake Lanier. For whatever reason, we left the apartment early and while on the way, it occurred to me that “shit! I’d forgotten to take my 8am pills” and great! I didn’t even have them with me. Well. Couldn’t do a damn thing, I just knew that moving around might be lil tough. Wasn’t like I’d planned to go in the water anyway, so I’ll just plant my ass in one spot and I should be good. We get up there and truthfully the day was uneventful. I definitely felt the effects of not taking those pills but there was nothing to write home about…until it was time to leave.

I’d taken the walker and the scooter and I was actually walking up the shore to the parked scooter. When I forget to take those pills, taking a step feels like I have 500lb weights attached to my ankles and as I was walking to the parked scooter, I was becoming frustrated because between my feet sinking into the sand and no pills, it was so difficult just to walk a few feet. I asked Lumy to “walk” my left leg for me. Now, understand that I’ve asked people to do this for me in the past…essentially, they will pick up the foot and place it where it needs to go so that I can advance. It doesn’t happen often but those times when I’m having a lot of trouble and there’s a willing participant, I’ll ask for help to get moving. As soon as he picked it up, I knew it wasn’t going to end well. I felt my body lean to the right and I braced myself. I fell (what felt like) straight back…sure did hit my head…hard! There were a number of people around so I wasn’t on the ground for long but it taught me something for next time I ask someone to do that. Truth be told that wasn’t the first time that I took a tumble doing that (writing this made me remember that it has happened before). In the future if I ask someone to “walk” my leg in for me, I need to make sure that we bend it before they lift it. That was the problem both times…if my leg does its normal thing – be stiff and straight – my balance will be thrown off and the risk of plummeting will increase. Not fun for either of us, although honestly I think it’s more traumatic for the other person involved than it is for me.

all in all, it was fine…no bruises, no physical damage. Lumy might have felt lil bad at first but “all in a day with MS” for me. I can also file it away as one of those MS trial and error situations – a learning experience, if you will. If someone ever has to “walk” that left leg for me, I know exactly how to instruct them so there are no mishaps. 🙂

I gone so…allyuh have a great weekend!

Life is too Short

i can’t believe this has happened again. I returned from my vacation and learned that 3 people had died. One was my favourite radio personality from the trini radio station I listen to regularly (he was younger than I), one person lives here in Atlanta and was one of the older Trinis who welcomed us into their homes years ago when I was a starving student and then there was Carlet. I met Carlet in primary (elementary) school; I think we were about 9. Over the years we didn’t stay in touch but whenever we saw each other, we would lime for a few and catch up. She was battling her own disease but you would never know it because she was ALWAYS so full of life, very positive and ALWAYS smiling. Goodbye my friend…my condolences to all those who loved her. I saw the following posted on her wall…

Speaking of making my life the best story in the world. I went to Barbados for vacation and had a fantastic time. One of the things we did was take a catamaran sail along the west coast of the island. Now Barbados, like Trinidad, is not the most “Stacey friendly” (read accessible) place and when we pulled up by the dock my cousin had to go inside to see what accommodations could be made for me to get on the boat. As she went inside, I got out the car and started making my way over because I wasn’t sure how it was going to happen but I knew that it couldn’t happen with my sitting in the car. There are only 5 people whom I would actually ask to lift me up to take me somewhere cuz they’ve each done it before and quite regularly too – I know I’m not the heaviest person but I certainly do not go around assuming that someone would lift me up if I asked. As I was walking to the dock, a guy came out and I heard him say, “yeah. We can pick her up and take her in”. He went back inside and came back out with another who scooped me up like a rag doll and took me straight on the boat without a second thought. Gavin, the captain picked me up and Reynaldo was his first mate.

the trip included 2 stops – the first to swim with turtles and the other to see 2 ship wrecked boats that are sunk off the coast. As everyone got off and went swimming with the turtles, Gavin told me that he’d take me out at the next stop – I was sceptical, slightly afraid…I am on that (now) self imposed ban from the ocean after all – but how could I say no to that offer. I’d certainly have to put all my trust in this man I didn’t know but could probably assume that he knew exactly what he was doing and signing up for. What the hell? You only live once…I have a a short clip of our getting in the water but alas, I am unable to load it for u.

The next stop was for lunch and fellas with jet skis approached. I remember looking at them and thinking, “sigh…if only.” I couldn’t see a way that I could end up on a jet ski at all. My eyes made 4 with Gavin’s and I guess I motioned or mouthed something to him cuz he indicated that getting me on the jet ski would be lil tricky (steups! – just as I thought). 5 mins later, I heard my name, looked around and Mone was calling me over. The guy whose jet ski she was riding was happy and willing to get me on. I eh go lie, it took about 6 men to get me on. Reynaldo was in the water holding the jet ski steady near the steps of the boat, Gavin was holding me under my arms with his partner jostling with my legs (because u know they weren’t working on their own – especially under all that pressha), one was swinging the legs where they needed to go and finally I was on. Fella jumped on behind me and we were off…

Was great – that day was certainly the highlight of the trip for me. When we docked, Gavin took me back to the car – no questions asked; he was wonderful…the entire crew was.

Take your life and make it the best story in the world. Life is too short for regrets and we get no “go backs”.

Soca Scooter vs Bumblebee

I haven’t posted in the last 3 weeks. it’s because I had a full house and just didn’t have the time. Alas, all good things must come to an end so back to our regularly scheduled program.

it’s a good thing that even though I upgraded, I decided to keep Soca Scooter around. Regular folk have 2 cars…I have 2 scooters. That was actually never my plan though. I had organized to give away Soca Scooter but because of timing issues I ended up having him longer than I thought I would, and that led to my discovering that he is better for (at?) some things than Bumbleebee. You know how cars of yesteryear seemed indestructible but the ones these days will crumple up like paper? same concept…I just don’t trust that Bumblee will be able to “take the jammin” like SS. I already talked about SS being my party/fete scooter and the other day I made another decision.

The area in which I live is very “scooter friendly”. I’m off a busy major road with EVERYTHING (read stores/groceries/restaurants) that I need/want and there are sidewalks on either side so I can (and do) scoot with ease. 2 weeks ago, a sidewalk was completed on my actual road but I didn’t mind scooting on the road itself before, because as busy as the major road is, my road isn’t. I scoot up my road and can go right or left depending on where I need to go and if I need to go right, I go thru a gas station to get to the pavement of the major road; going left I go thru a bank parking, again to get to the pavement of the major road.

Well one day, a work day, I had something to do and I left my apartment and scooted up my road. I didn’t think of the time because that day was the first of my vacation and who thinks bout time or days of the week while on vacation. I was almost at the top of my road and noticed that there was a line of cars at the red traffic light. that’s when it dawned on me that “shit! it was lunch time…more traffic on the road.” No worries, by the time I get there the light would be green and the cars would have moved besides, I will be going thru the gas station and because of the position of the driveway, i’d be good. Well don’t u know it; I got there and the light was still red. On top of that, the car that was in front the gas station driveway was angled such that I couldn’t get around it to enter. I had to join the line just like everybody else to wait for the green light! Camry, Benz, Toyota, Stacey in Soca Scooter, Mazda etc…the ridiculousness of the situation did not escape me and of course I started to laugh – probably looked like a mad woman – that light could not change fast enuf!

The other day Obs and I went up the road and I used Bumblebee. I swear that since then, he hasn’t been the same (it’s too hard for me to explain). He still works just fine and he is the one I use anytime I’m heading out on my own or being picked up, but I think SS is more suited to handle the rugged terrain on the sidewalks in my neighbourhood. Part of my reasoning too is that Bumblebee’s platform is narrower and the center of gravity is higher than SS and I feel nervous driving over the slightest incline – especially at an angle – I have a slomo video in my head of my toppling over (this actually happened before…luckily I was with some alert, quick thinking and acting men) in the middle of a road somewhere. Can u imagine how distressing/mortifying it will be if it were to happen if I’m by myself?!? so the verdict?

Stax3.25 aka Soca Scooter – fetes/parties/driving around the neighbourhood
Stax4.25 aka Bumblebee – liming/going out anywhere else

Atlanta Carnival – A Short Post

so this weekend was Atlanta carnival. MS has made me change some things and one of those as u know, is I doh play mas any longer. As much as I always try to “spit in its face” when it comes to sun, I have come to terms with the fact that fighting up with the sun while playing mas eh making sense. I used to be on the road in Atlanta but those days are no more. I continue to go as many fetes as I can and one of those is called “Sunday Morning“. It normally starts at 8am and it’s outdoors but my hope is always that by the time the sun really starts to blaze in all its glory, the party will be done (or at least almost done) so my suffering should be short lived. Well this year because of the weather, it started at 11…shit! Oh well…wha yuh go do? off we went.

At some point, while we were in the sun (of course), G insisted that I move under the “shade”. At the time I was still okay but I went cuz I figured maybe it wasn’t such a bad idea. I say “shade” because it was just pieces of fabric draped over the dance floor so I knew it wouldn’t really do anything and eventually, I could hear my voice getting softer and softer as I spoke (most annoying) and I could feel the energy slowly but surely drain from my body. I wasn’t as badly off as I have been in the past but it’s always very annoying to me to be in that state. I also realised that when I get like that people think I’m drunk (I’ve heard comments on a few different occasions)…Steups.

Back in the day before I started walking with a cane, when people saw me walking and holding on to someone, they used to think I was drunk…now, when I am a wiped out mess from heat/sun and people see me just sitting motionless with limp limbs in the scooter, they think I’m drunk – fucking MS! It also didn’t help, I suppose, that it was an all inclusive party. If I was drunk, I guess I cyah get vex, but when I’m not it jes pisses me off.

anyway…fete was good…had a great time in spite of it all and I recovered enuf to go somewhere else after. if u ever in Atlanta for carnival u want to include it as a bong to/have to/must go fete for the weekend. All inclusive, reasonably priced and vibes cyah done.

Things I Learned as I Rolled

Last week was a weird one, hence my posting off schedule. Also, WordPress formatting automatically increases font size of bulleted items so don’t hold that (below) against me.

My dislike for bathroom mats is real! Huh? Yes it’s true. This is what happens:

I walk in to use the goddess and my foot, 9X out of 10, will get tied up in whatever mat is there. I remember one time going in and there were 2 (double ugh! what the hell is the point of 2?!?) thick ones so my sneakers just kinda sank into them and once that happens, the feet eh going anywhere easily. Remember that my left leg/foot is weak, and once the foot gets stuck, I’ll be going nowhere fast. 2 Saturdays ago, I kinda lost my balance lil bit and I was standing on a bathroom mat. It wasn’t plush but the bottom surface was slippery so I started sliding. Had I been by myself, I would have hit the ground. I have NO use for them and I wish that I didn’t have to deal with them ever.

Handicapped vs disabled

Apparently it’s not a nice thing to describe somebody as handicapped in this country – they say that it’s offensive. Quite frankly I doh see the big deal. Handicapped is not being able to use part of your body or your mind because it has been damaged or does not work normally. Disabled is impaired or limited by a physical, mental, cognitive, or developmental condition. Hell. I know that I have problems walking around and need walking aides, cyah play mas or buss a good wine when I ready – I have limitations and my body doesn’t always work normally. I definitely prefer:

To be spoken “to” vs. spoken “about” as in Person A talking to someone I’m with, “can she walk?” hello! I’m right here…u can ask me
If someone asks “how” they can help or “if” I need help rather than just doing what they assume will help
When people actually listen and follow my instructions when I explain what will actually help

Being referred to as handicapped vs. disabled? cyah bother get my panties in a bunch over that

Sometimes figuring out how to get up is actually worse than falling

A fall is never a nice thing but I’ve discovered that sometimes (I guess if it’s a “good” fall) it’s more traumatizing to figure out how to get up than the fall itself (especially if I’m alone). Sometimes, it’ll even take multiple tries before I get it right. one time, I was alone and I had just unlocked my door and buzzed a couple into my building. I fell in the kitchen exactly where they would be entering…I didn’t even try getting up; I just stayed there cuz I figured I’d just use the help to get up. Of course, as soon as they poked their heads in, I assured them that I was okay because I knew it would have been alarming to push the door and see me on the floor.

Not all “accessible” hotel rooms are created equally

I learned that the hard way. I cannot climb into a tub so I need a shower stall (luckily some hotels actually have showers) or what they refer to as a “roll in” room. Essentially, I need a room that someone in a chair needs so that I can just shuffle into the shower. The first time I booked an accessible room, it had bars all over so I could hold on and stabalise if needed but there was a tub and that was of no use to me (the last time I tried to climb into a tub, I’d thought, “hmmm…I can do that – looks doable” – it wasn’t! It didn’t end very well and G2 had to buy a new shower curtain rod). Luckily, the hotel had a roll in room that I was transferred to so the weekend wasn’t shot to hell.

Pushing a door is better than pulling

This one is probably obvious but if a door has to be pushed to open, I can use Bumblebee to do the work – no probs. If the door is to be pulled open, I could find myself in a pickle…unless the handle is on the left side. Did it ever occur to me what side a door handle was on before? Hell no! Now it sucks when the handle is on the right because of the angle at which the door opens and the position of Bumblebee. Writing this, I realise it’s hard to explain but trust me…it’s not an easy feat (nor do I look nice and/or graceful) getting thru a “door to pull” when the handle is on the right.

i’m sure there are some more things but I can’t think of any right now; maybe this post will have a part 2. Anyhoo, I hope allyuh have a good week until we meet again.

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