Author: staxone@me.com

5 Additional Things I Couldn't Live Without

somehow I ended up reading this post the other day and realised that I need to modify the list somewhat. Those 10 were in no particular order back in 2012, but there are some items that are still quite relevant today. They are: My  Inner/Outer circles, alcohol and my AM/PM pill boxes (I don’t take that many pills but without those things I wouldn’t be able to keep up with what I’ve taken and when and I’ll be up shit street regularly).  I hope I never have to experience life without any of those – nuff said. fast forward to 2017 and here are my additions:

My Life Alert Chain
I didn’t want it and was forced to deal with the fact that I need it. I started with a bracelet that of course, I’d forget to put on but these days I wear a chain and it’s somewhat embarrassing (mortifying actually), because sometimes I go out with the damn thing around my neck and I can safely say that it goes with absolutely nothing I wear. Like I’ve said before, I’ve come to terms with the fact that it’s a necessary evil so ugh! whatever! I am happy to report tho, that I’ve never actually had to use it (knock on wood) and the one time there was a misunderstanding, responders were there in 2 2s and the process worked like a charm.

Look closely and u’ll see it swinging round my neck

Soca Scooter and Bumblebee
I’ve actually had dreams of not having them handy or their being damaged/destroyed…that should be rewritten as “nightmares”. I cannot imagine my life without them.

My walker
The first installment included my canes; now it’s my walker – sigh!

Speaking of walkers, my walker tray
When I walked with my canes, I had a free arm/hand to use as needed.  Well with the walker, no hands are free. At first I used to use SS in my apartment when I had to carry food (anything really) but I needed to cut that out as it limited my walking. I went to my trusty Amazon (I am an amazon old ‘ho) and started searching and of course, there it was – a walker tray (it still amazes me all the things available “out there”…one jes has to start looking). Great buy and best money spent …that month.

Lyft
The decision to stop driving was one of the most difficult ones I’ve ever had to make – I still miss driving to this day. My not driving meant that I was just about completely dependent on others and that wasn’t something I wanted to deal with at all. I remember how nervous I was the first time I used Lyft (Hannah was my driver) and how anxious I was about people pulling up and seeing me in SS. Now, nothing fazes me and I’ll deal with whatever situation presents itself (one day I’ll tell u about my getting in the various SUVs – LOL). I was able to reclaim so much of my independence using Lyft that I’m not sure how I’ll handle it if the company ever goes under (I eh really feelin Uber). I’ll be forever grateful to T-ster for suggesting it.

I think that’s it for now. Special mention goes to my bionic foot but I can,  and do, walk without it so it can’t be a “live without” item.

In other news, I’ve been on the PT waiting list at Shepherd Center since March. They called me last week so I go back to PT & OT later today. The last time, they discharged me after 6 sessions, so we’ll see what happens this time.

Anyhoo, allyuh hol’ it dong…I gone so

That Samuel-O'Brien Chick!

Indulge me…I going and toot my own horn a lil bit.

it still amazes me after all these years that I have such a positive attitude about having MS. It’s so not like me; I’m usually so pessimistic about things. Maybe deep down somewhere I knew that my outlook will make it easier for everyone around me to cope? I know they feed off my energy/feelings/outlook. I was reminded of that last week Saturday while I was talking to one of my aunts and she was talking about getting old (in fact, for years she been telling us young’uns not to get old because it is in fact a bitch) and she said, “u are amazing…how u deal with everything. It’s because of ur attitude that we can be positive about so many things.” It eh easy trust me, but it is what it is, wha ah go do.

from the moment I was diagnosed my doctor always encouraged me to exercise…that’ll help things he said – years ago it was thought that exercise was not a good thing for MS patients – of course that train of thought is no more. Back then I hated the gym, sweating, exercising, weights…all those gym things. Slowly but surely over the years that has changed and now I actually like working out. Never in my wildest dreams did I think I’d ever get to that point but here I am. Now I certainly eh no gym rat and there are days when I can do without it but I like working out. Problem is, I can’t go by myself- well I could but why tempt fate; u know that I’ll be moving from one machine to the next and will end up on the floor! Enter Spree – my personal trainer. we’ve been together for the past year and a half and she’s talked about how nervous she was in the early days. We talked on the phone and I told her that I can walk but I’m in the scooter…I have MS…blahblahblah. She was cool and said yes no problem but was a bag of nerves because she didn’t know what to expect/couldn’t figure out how we’d be working out etc.

i think from day one I put her mind at ease though. I told her from then that working out was no problem for me. In fact, I’m willing to try any exercise or machine. If while doing it, I take extra long or we realise that maybe this isn’t a good idea then we know that maybe we shouldn’t do it again. (In fact, a dream I have is to start doing pull ups but not sure how we going to get me in position – but I know that one day we will try to make it work; that may be a story for another day. who knows!). Her biggest fear of course was that I’d fall “on her watch” and so the day it happened and I kinda dragged her down too (as strong as she is, she was no match for me!), she was mortified…me? Not so much – all in a day’s work…in fact allyuh know I started laughing especially when I realised that yes I pulled her down but we were both just fine. She also feeds off of me…she knows that she can throw anything at me and I’ll figure it out as we go.

i don’t need reinforcement but it’s always nice when anyone, including those who don’t know me, say encouraging things to me. I’ve had strangers in every gym at which I’ve worked out tell me that I inspire them and give them the strength to come out because if I can come workout, then they have no excuse whatsoever.  It tells me that “hey! it’s not all bad right?” and clearly I must be doing something right.

Hopefully, I will be able to maintain my positivity/upbeat outlook and my wretched disease won’t throw me a curveball that I can’t (or don’t want to) handle – time surely will tell.

P.S. I’ll be out of pocket next week so I sure won’t be posting anything.

The Inner/Outer Circles & MS

“I have a circle, a circle of best friends, a circle of bredrens Yeah!… (I) have the best circle, the best circle around, (I) have the best circle in town” Kerwin Dubois – Circles 

MS doesn’t only affect me…it affects everyone around me as well.  I always make decisions with my inner circle in mind because a lot of what I do could impact them as well.  I’m not a burden to anyone (or at least I don’t think I am ;-)) and anything that I can manage on my own, best believe I do it. Those times though when I do need help for anything, I know that I can count on any one of my friends at any given time. I’ve observed over time that that also extends to other people around me. I don’t party or go out as much as I used to and that is not only because of the MS – at times I just feel that I’ve been there, done that so I have no desire to put effort into going here, there and everywhere- these days, it’s all about quality not quantity for me.

One of the few times I make the effort every year, is to go a rooftop breakfast fete. The issue with that rooftop though is that there is no elevator. I have a few friends who will pick me up and carry me whenever necessary without batting an eye but on the rare occasion that none of them is around, we’ve actually asked other folk and they have always been happy to help. Asal’s response to my “but Suite Lounge has no elevator” is always, “doh worry. We go find somebody to take u up”. All of the inner circle knows that the legs need to be manhandled when I am struggling because if not we would take 10x as long as necessary to go wherever/do whatever. If a stranger is helping me I tell them, “just do what u need to do to get them where they need to go.  They are not going to break and u’re not going to hurt me.” If I notice that they’re still handling me with kid gloves, I tell them again and add “trust me! cuz if u take ur time, we’ll be here all day” and that usually does the trick. On the rare occasion that I have to hold on to someone to walk for whatever reason, I always try to make that person feel as comfortable as possible. I’m sure it must be a lil unnerving feeling as if you’re responsible for a handicapped person so I always try to be cognisant of what the person is going thru and do my best to make them feel at ease.

I swear I actually saw terror on an old friend’s face before. She’d never helped me and the bad thing was I just kept yapping and yapping – completely forgot about trying to make her comfortable.

I’m very open about having MS so I always assume everyone knows. I guess knowing about it and actually seeing me walk or in the scooter are 2 different things and I ran into an another old friend who hadn’t seen me in forever. Although we were in a carnival fete, his tears flowed freely because he just couldn’t handle seeing me that way. I assured him that things were okay and I insisted that he stop crying cuz there was food to be eaten and drinks to be drunk ?

G always says that we need to make the MS work for us whenever we can.  She’s right…I mean the shit is here and it’s here to stay, might as well take advantage of it whenever we can. Last Saturday 4 of us went to a football match. We all had separate seats but they came to my seat first to make sure I was squared away before going to theirs. Because of where the handicapped seating is (I have some of the best seats in the house) there were many officials around manning the area ensuring that no one was congregating and there was a constant flow of people. They were moving ANYONE who stood still even for 2 secs, in fact I saw someone call a cop for a patron who ignored his 3 requests to move.  The match started and I realised that my 3 friends remained standing behind me…hmmmm, that’s strange but hey I wasn’t complaining. At half time, the 2 guys went for drinks and I said to Sdee, “what allyuh do the officials that they leave u alone for the whole time?” She said “girl. meehknow but I just happy they eh say anything.” P and K came back with the drinks and we kept limin and then it came up again.  That’s when I heard that P told the official who bothered them the first time that “they were my medical staff and had to stay with me“. I think I almost fell out my chair laughing with that one. It was a perfect example of G’s philosophy. P saw an opportunity for them to take advantage of the MS situation and he took it and made it work in our favour. If you ask me, this was nothing short of Pure Genius! the fact that the official actually believed him? not our problem!

Said by G telling someone a story:
“yeah, that boy was winin on Stacey and he almost mashup her foot.  She almost lost her foot and he almost lost his life”…the reason she said that was that we had to talk SD down from a ledge because he was ready to blowout the boy in question because he really made a kind of jackass move

Those are the kind of friends and family (near and far) I have – I’m lucky, I do have the best circle in town.  I know that anywhere we go/anything we do (even if I’m by myself), they always have my back and will provide me with support at the drop of a hat. They truly are amazing!

Lyft Driver we'll call Ron

I cannot make this shit up!

(disclaimer: please realise that this post is not meant to offend anyone in any way)

A couple months ago, I requested my Lyft pickup and went outside to wait.  Every time the driver rolls up, I ask them to turn the car around and pull up alongside a certain wall because it’s easier for me to get in the car (less heartache and drama for me to get in a car behind the driver just cuz my right side is stronger). This time was no different and as “Ron” turned the steering wheel, I noticed something off with his arm…I paid it no mind. Well he turned the car around, pulled up and I started angling SS to back up, get in and be on my way.

Of course anytime I leave here, I’m in the scooter and that time I was using SS.  SS breaks down into 3 parts (the seat, the battery and the base and steering rod) to fit comfortably in a car trunk. I always get off and then talk whomever thru the breakdown process.

So…I angle to back up and get in the car and Ron gets out the car and opens the back door for me…that’s when I see he has a prosthetic leg and no forearms.

(in my head)…holy shit what the hell we going and do here??? Then I said okay Stacey, as a handicapped person yuhself, now is the time to remember how u would want someone to talk to u. (Out loud) I told him the usual about SS breaking down etc all the while wondering what the?!? how is this going to work?

…Ron was not bothered at all (at least not outwardly).

We started with the seat. Remember I said he had no forearms so he didn’t have the arm span to pull up the lever on the left side and pull off the seat at the same time but recognising that before hand, I pulled up the lever and he hauled that seat up like nobody’s business. Battery time…I figured that would be tricky (it has a handle to grip and its attached by Velcro) but I told him what to do. This time I was right…he was trying to grip the handle (I could see muscles by his elbow joint flexing) but because he had no hands/fingers, he couldn’t get a hold of it. Well wouldn’t u know it…after his third try, the doors thru which to enter opened and 2 fellas walked out; he asked for their help. Noticing the situation, they asked him if he needed more help so he asked them to put the rest of SS in the trunk.  Normally by this time, I would already be sitting in the car  but that Saturday morning was anything but normel, and as it turned out, they couldn’t fit SS in the trunk (naturally – that woulda be too easy!).  He asked me if I wouldn’t mind sitting in front and he’d put the scooter on the backseat.  I didn’t but I told them that I’d need to hold on to someone to walk around the car and then I’d most probably need help to get in the car (when I sit in the front, more times than not, someone has to swing and throw my legs in).  One of the guys was happy to oblige!

well by this time allyuh, I was laughing hell hard in my head at the situation.  if dem 2 fellas was anything like me, they couldn’t wait to tell someone/anyone this story.  it was nothing short of incredulous!  Finally… scooter, Stacey, Ron all in the car and we leave…and then I think, “oh fuck! how are we going to get SS out when we reach where I going” I mentioned it to Ron but once again, he wasn’t concerned.  Well as luck would have it, there was a man standing outside his storefront of the usually quiet, “nobody ever around” place that I was heading and as we pulled up, Ron called out to him for help onetime.

We got out and everyone went on with their day…I eh know bout Ron and dem 2 fellas, but I had a few good laughs every time I told the story that day, because the response was always something along the lines of “nah!”/”yuh lie”/”yuh kidding right?” but once again…

…I cannot make this shit up!

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