life as we knew it is on pause. 2020 rolled in and put its stamp in the history books. Sigh. Anyway this is just a short note to say that I’m working on some changes to this site…so hang on..be back soon
Author: staxone@me.com
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.
Health, Hope & Hops
Allyuh ever buy a ticket to go somewhere just because? U know nothing about it and have zero expectations and as u buying the ticket, u say, “well self. how bad can it be? I mean, it have alcohol so…jes buy the ticket.” And then u go and u have the time of your life? That was me with Health, Hope & Hops last year. Lol. It’s an annual fundraiser held by the MSCA. I’d seen the emails for it before but never went. I don’t remember what made me decide to buy a ticket last year…actually….now I think about it, every year since i put them together, Claire the organiser, avidly works with Aunty P at the Men Who Can Cook event so I decided to go to support Claire. Besides, that meant that i was doing my part to ensure that the MSCA stayed in business – I need it. i bought my ticket. Soon after, G told me that she was going to be here that week so we organised for her too.
“HH&H” is held at a brewery in downtown Atlanta on a Thursday night. It starts with a complimentary cocktail hour between 6 and 7 followed by a 4 course dinner that’s “MS healthy and prepared personally for the evening”. Each course is paired with either beer or wine. G got there right around 6 (cuz she wasn’t working that far away) and took advantage of the cocktail hour. By the time I got there at 6:45ish I was able to get a margarita that was the worst I’d drunk in my life so the evening really started on shaky ground -I eh go lie. There were a few opening remarks and then everything really began. We didn’t know what to expect, so we figured that based on the menu choices, we’d divide and conquer so that between us, we’d get a taste of everything. Well. What we didn’t know was that everybody got everything on the menu and we didn’t get beer OR wine, we got beer AND wine with each course if u so chose – we chose. We thoroughly enjoyed ourselves and the waiters weren’t stingy with anything. Thinking back, neither of us can really pinpoint any ONE thing that made the night so good. I guess it was a combination of the food, the people, the cause and last but not least, the ever flowing alcohol. It was a “school” night but we didn’t care…we were having a great time. At the end, I knew that I was never going to miss it again.
This year, it was held on April 19th and I roped in SD, Frit, K and Dom and OB got lucky because he happened to be here. Once again, it didn’t disappoint and Frit even went as far as to to say that it was “the best night he’d had in a long time”. There was a waiter there who seemed familiar to me and I asked him if he was there last year. His reply was yes and he went on to say that he always signs up to work the event because he always has such a good time doing it. G couldn’t be there this year, so I tortured her with pictures throughout the night. Once again, none of us can really pinpoint exactly what it was that made the evening so great, but everyone had a fantastic time.
Both years it was on the 2nd to last Thursday in April, so I’m thinking it’s almost safe to say that that’s when it’s held every year. If you’re ever in Atlanta around that time and looking for a good time for a good cause, be sure to check it out. Health, Hope & Hops held by the Multiple Sclerosis Center of Atlanta and hosted by the staff at the 5 Seasons Brewery. And guess what? for everything you get out of the night, it is dirt cheap and sooooo worth it.
It's Not Easy Being Me
The Trini way to say this is “it eh easy being me nah” smh…I tell u! Any time I have to stay in a hotel by myself, my biggest concern is “will I be able to climb onto/get off of the bed”. The beds tend to be so frigging high that I may not be able to do so. Well, I went down to Florida last weekend and my plan was that I’d ask for a cot to be placed in my room cuz surely I’d be able to use the cot if I couldn’t use the bed (I refused to think about whether or not the cot would be too low and still cause problems). So at check-in, I told the fella my concerns and he told me that because I was in a “roll-in room”, the beds were actually not as high as the normal beds (a roll-in room is one with a flat shower that someone in a chair can easily roll in to bathe. I need that because climbing into a tub will not end well for me). He told me to check it out and if I couldn’t get in the bed, he would gladly send a cot up. I got to the room and wouldn’t u know it, I could get in/out easily – no probs…woohoo! Another of my needs (remember I’m high maintenance now), is a stable chair; there’s just no telling what can happen with my using a chair on wheels to do everything I need to do, so why tempt fate? They brought up a chair for me.
I was in a room with 2 beds and I told them to put the chair between the 2 beds…I was set. The second night I was there, it was time to go and sleep and I started climbing into the bed. I guess I misjudged something but the next thing I knew was that I was falling off the bed – I actually remember the night before saying to myself,”oooh Stacey, yuh kinda close to the edge here. Do not fall off this bed.” And so here I was the next night falling off the damn bed. It was fine…I didn’t hit anything or hurt anywhere so was no problem and I landed on my behind. The easiest way for me to get up from the ground is to be on my stomach and push myself up so all I had to do was flip over and restart the process. Well guess what? Allyuh believe that the blasted chair (that I asked them to bring in for me to make my stay easier) made the space between the beds so small that I didn’t have enuf room to easily flip over to get up – damned if u do, damned if u don’t. I couldn’t believe it…steups (of course I had visions of not being able to get up and all sorts of things). I had to do all kinda “manouvre-ings” to get out that space but I did it. It also didn’t take me as long as it could have but geez man is allahdat i hadda go thru?!?
All good things must come to an end so GHK took me to the airport to fly back. Whenever I fly, I hang my handbag and my carry-on knapsack on the handlebars of my scooter and I hook my luggage on the arm of the scooter and roll it behind me. We pulled up by the curb, I got out and was already sitting on Bumblebee while she got my handbag and knapsack out the car to hang them onto Bumblebee.
Little background here: Soca Scooter’s controls are in front the handlebars (closer to me) so I have gotten in the habit of turning him off whenever we are stopped because it is very easy to hit the controls by mistake and take off unexpectedly (that happens a few times and u learn very quickly to always turn him off). Bumblebee’s controls are behind the handlebars and so his taking off by mistake is less probable so usually, I don’t turn him off (forgive the bad quality of pictures)
…back to Florida.
I guess I was maccoing something because at some point, something triggered somewhere in my brain (actually it might have been GHK’s voice that I swear I was hearing in the distance calling my name) and I realised that I was moving. Waitaminute! What the??? Luckily my reflexes kicked into action (thankfully the MS has left those alone) and I was able to avoid driving off the curb because that’s exactly where I was heading. Thing is, I didn’t understand why the hell I was moving and it actually took me a few more seconds to figure out that maybe I should just turn it off. By the time I’d stopped – luckily minus drama of running over anything or anyone (in the airport on the way down, I’d rolled over a little boy’s foot but he didn’t react so I kept it moving) – I discovered that when she hung the bag over the handlebars, it also went over the controls and, well, Bumblebee was on so off we went! There was a porter standing there watching everything unfold and he must have figured we were crazy because of what happened as well as the fact that of course, after it all ended and everything (and everybody) was okay, we started laughing up a storm.
never a dull moment when I’m involved but then I guess if things ran smoothly, life will be lil boring huh? Hol’ it dong till next week!
That's it For Now
so therapy’s over. They were 9 well spent hours each of PT and OT. The Shepherd Center and those who work there are amazing (I say this from my personal experience and I’ve heard stories from other people). Anyone out there reading this who is living with MS in the Atlanta area, if you can afford to wait the 2 month waiting period to get in, do it. U won’t regret it and it’s well worth the wait. There’s also an MS Wellness program that I’d love to join but alas all the sessions/classes offered happen during the day so I can’t join. I was discharged 2 weeks ago but both therapists told me to do things on my own for a couple months and then come back. So that’s what I’ll continue to do until my insurance company puts their foot down.
The very first PT visit started with an evaluation that included a 6 minute walking test and at the end of those 6 minutes, I’d taken 153 steps. During the last session, we reevaluated and in those same 6 minutes, I took 225 steps. I also tested better in some of the strength tests that Ian had done before. Yay!! Improvement is great although i eh go lie, a little part of me was thinking that maybe it was just a better day for me plus the day before had been leg day in the gym – hmmmm…there’s that “glass half empty” person I know. At the end of the reevaluations Ian said, “well. U have 20 more minutes…anything special u want to do?” I eyed the Alter G…it was calling my name. Admittedly, I did much better in it too. The first time, I could only walk at a speed of .3 with some issues and on the last day I was at .4 with no issues. So it’s over for now, back in it sometime in 2018.
ive never been part of an MS support group or attended any meetings/support sessions. One time years ago, I enrolled in a 6 week wellness class that had been sponsored by the MS society and it just so happened that every single person in the class had MS. I must say it was good to be around people who knew and understood what I was going thru. Some of us tried to keep in touch after but that eventually fizzled to nothing. Rebecca (OT) suggested that I become a part of the support group that meets at Shepherd. They meet on the 2nd Saturday of every month so I went last Sat morning. Two interesting things happened.
* At some point in our discussion -it was only 7 of us, 4 of whom had a neurological disease and I was the only one with MS – the leader of the group said that she could hear it in my voice. Eh? That was a first…well she was referring to the tremor that I mehself sometimes hear. She went as far as to say that had we been talking on the phone, she would have thought that I had MS. Apparently she’s heard the same tremor from multiple MS patients…go figure!
* I met someone who hooked me up with contacts to start my new medication regimen – that of the alternative kind. Ever since medicinal marijuana became legal for some diseases (MS included) in GA, I’ve been telling myself to look into it and I have but I’ve also been dragging my feet (no pun intended). Well this chick was there who strongly advocated for its uses (she herself uses some products to manage her disease) and I knew that I had to stop stickin. I’ve left messages for both my doctors so that hopefully at least one of them will be willing to put me on the registry and I will be on the way. The company to which she referred me makes CBD oil products to be ingested as well as topical massage oils and lotions. I’ve already spoken to the owner…more to come on that.
alright…well I gone so. allyuh do have a great weekend!
P.S. – One of my calls was returned. the MSCA is not participating in anything related to medicinal marijuana so they won’t add me to the registry. fingers crossed that my primary care doctor will or else i’ll hadda figure something out.
