Side Show Life

Okay, so here's another story. I was telling my caregiver a bit about it the other night, so figured I'd write about it. 

It's... 1992, 93? What a great time. I was 24 and living with two guys in the main floor and basement of an awesome house (albeit falling apart) in a very funky part of town. I was collecting Employment insurance from yet another layoff, and working under the table part time for an entertainment and event company. I mean, the owner used to be a stripper and started the agency to book strippers, but branched out. She had a hard time escaping that past though, and a big part of the business was booking dancers for stags, stagettes, topless hostessing... Those were all my department. As was booking "novelty" characters, like birthday grams or a Marilyn Monroe impersonator for your event or something. Our Marilyn impersonator was a man, and you'd never know it. Unless he was hired for that reason to trick your boss for his birthday strip-o-gram. Ahhhh, Terry, whatever happened to you, I wonder. 

Anyway, I made a lot of friends working at that agency. Mostly the novelty characters, who were great, fun people around my age. One of them I had the BIGGEST crush on! He not only appeared anywhere you sent him in costume, but he made the costumes... Incredible Aliens, Ninja Turtles, Batman, you name it. His house was full of foam, glue, material etc. and many free-standing costumes. He is now, as far as I know, living in BC and has made a name for himself working as a costume designer for many TV shows and movies you'd know. I always look for his name in the credits. 

A lot of the dancers were nice people too, just stripping their way through school or something, but I never made FRIENDS with them. 

It must have been through one of these friends that I came across a little freak side show, whose name I won't reveal because they're still around, run by the same guy, and I don't think I should talk about them. So I'll call the show Side Show, and the owner Todd. Anyway, Todd had this Side Show running out of the upstairs of an old liquor store. It was a museum of oddities he (says) he either inherited from family members who had freak shows of their own, or he made them himself (although he'd never admit that). Every night he hosted a live show, with all the usual side show stuff - fire eating, impaling, man of steel, sword swallowing stuff. And Todd himself was a master showman, SO good at that, convincing everyone that his mind reading and magic was real. His presence was magnetic, it's no wonder he still runs the show. He was extremely talented, but also an EXTREME ass. 

Somehow I ended up working there. Not for pay, but just for fun, and to be around these amazing freaky people. I worked the door and the concession stand. I remember one night Todd told us he wanted a real sword swallower in the show, and we all tried it with a long spoon. The only person who didn't gag was Peggy, so she got the job. She went from that spoon to huge swords and pink flamingos... She was really good. We had to rush her to the ER one Halloween night that we had a show at a club, and she scratched her esophagus with long shears. The ER nurses thought it was a prank at first, but one of the doctors was so fascinated, he asked her back to get X-Rays of her with a sword down her throat. He wanted to show it in a class he taught, and she then had proof to bring on stage for anyone who doubted her ability. 

There was also Big Ross. He looked like your typical biker dude - big, with long hair and tattoos, but he was SO nice. He did all the burly man stuff - like eat glass, take darts in the back, get electrocuted. You know. The electrocution chair was an old one that Todd said came from a prison (whatever...) Nothing happened to you when you sat in it and it was turned on, so Ross had to fake the being electrocuted part. But what was interesting, is that your body did act as an electricity carrier, so to prove it was "real", Todd would light a torch off Ross's hand. He always got that fire, but Ross never felt a thing. We all tried it, too. I'll never understand how that worked - I'm sure an electrician knows. Years later I saw Ross working at a record store downtown, completely slimmed down, more tattoos, platinum hair, and those huge holes in his ear lobes. I asked how the hell he managed to do that!? He said "persistence". 

Then there was Matthew, the impaler. HE REALLY DID IT. This kid (he was 19) liked pain. He'd hang fish hooks off his chest, impale large needles through his arm and cheeks. I mean, the needle went in one cheek, out the other cheek. And he REALLY DID IT. Later on he would become one of my roommates, when we had to ask one to leave because of his drug problem, and I really got to see what a quirky person Matt was! He idolized people that brought pain to themselves through various forms of impaling and piercing. He had many magazines featuring this culture. Matt himself had many tattoos and piercings, and was an amazing illustrator. He wrote and drew adult-themed comic books. At one point, because he was crazy, he excused himself and Ross to our basement for some reason. Ross came back up and said "nope, I can't watch that" as Matthew was piercing his own penis. The Prince Albert, I believe it's called, the ring at the tip. Then I always like to give men the heebie jeebies when I tell them that while sleeping on his side on a hide-a-bed, it hooked on to something, and then he rolled over...

I could write a lot more about Matthew. At one point I remember him making this big announcement that he was gay, and none of us flinched. Either we figured as much, or didn't care. That wasn't the reaction he wanted, so a few months later he announced he was NOT gay. I'm sure he's all grown up now and not doing that stuff. But he used to talk about wanting to go on tour with a human atrocity side show, throwing himself through glass and stuff. 

Ah, the fire eaters. The show was just Pat doing his fireating tricks, but my friend Cara took an interest in him, and therefore, fireating. She was one of the clowns and novelty characters at the agency I worked at, which is how we met. She had also known Pat since elementary school, but he was a nerd and she was one of the "cool chicks" all through school, so they never talked. Now, Pat was tall, handsome and pretty damn cool, and Cara was interested. I actually knew they'd get married before they even went on a first date. (Three kids later, they've been married for over 20 years. But I digress). Cara used Pat as an excuse to learn about fireating, and soon they put on a show together. It was during one of the rehearsals that I decided I, too, wanted to try that. So Pat explained it to me, and I ate fire. I also did transfers - you know, when you have one lit torch in one hand, and an unlit one in the other, and use your tongue to transfer the fire from one torch to the other. I felt so cool. I burned the inside of my lips, but those burns heal fast. 

Soon, Todd felt Pat and Cara's "love story" routine, and the two of them as a whole, were not "dark' enough for the Side Show. So they were replaced by Trish, a long-legged elfish looking girl who brought grace and beauty to the show. She was a dancer/actress/all round artist and totally fit the part. One night though, during a show at a nightclub, she did the usual big ball of fire thing. You know, when the fireater takes some gas in their mouth and then spits it at the torch, causing a huge flame that "ooohs" and "ahhhs " the audience. Unfortunately, without thinking, she didn't spit the rest of the gas in her mouth to the side - she spit it out again. This caused the fireball to follow the gas back to her face! Her entire face and head were on fire. Straight to the ER, screaming, nurses scraping her face, oweeee, oweeee, gross. She had 1st, 2nd, 3rd degree burns everywhere. However, she never hid herself as she healed. She wore a scarf on her head, but otherwise she slathered her face in aloe and went about her business. To this day, you'd never know she had that accident. I remember seeing her as little as two years later, and not seeing a scar anywhere!

Todd asked his friend Heather to be in the show. She was a tiny girl of many talents, her last job being a magician's assistant and she just came home from a long stint with him on a cruise ship. She also clowned and did human mannequin stuff (man, these were interesting, free spirited people). Her act became the woman who ate worms and live goldfish. Yes. Only she could make that sexy. 

The old liquor store that housed the Side Show had been bought and was being renovated. Todd had to shut down the show, and needed somewhere to store the museum items. I asked my roommates, and we decided he could keep it in our basement for awhile. A two-headed calf and a perfectly shaped thumb-size baby in formaldehyde were among the crazy pieces in my basement! Once the show was shut down, our house kind of became the hangout. Matthew and I lived there with our roommate Mike, and everyone else mentioned above visited almost daily. Todd knew how to make EVERYTHING about him. It didn't matter what we were doing, if he showed up it suddenly became about him and we ordered pizza (that I don't think he ever chipped in for).

Todd was exhausting. Feeding that ego was a full time job. I had been to his apartment on several occasions, where he always turned it into a show. You waited in the hallway while he set up his smoke machine and lights (or whatever) and then you could come in. Once he opened the door and stuck his black-died head out with a creepy "welcome! Hahaha". He had a million mind reading and magic tricks to show anyone. I actually learned a lot of magic tricks (because I was so close and made fun of him taking himself so seriously by grabbing stuff) which has since taken the "magic" out of so much. Once you see how it's done, you wonder why you were ever amazed in the first place, and then you wish you didn't know. And when it comes to "mind reading", just remember, if there's instructions involved, it's a trick. True mind readers could just tell you what word you're thinking, not make you follow instructions to get there. 

Anyway, eventually everyone tired of showman Todd and his ego. He advertised himself as a fireater (?? He'd never done it) and got a job as an extra on a TV show filming around here. Naturally, there was an injury involved, and rather than drag it through the courts, the production company paid him off (it wasn't much, but enough) and he took off for Toronto, where I believe he still is. Oh, and my basement? We got a new roommate (super awesome guy I'd crushed on in high school, who was frequently visited by his super awesome and cute friends - I had a good thing goin' on) and he needed that space for his art studio. So we called Todd. And called him. And called him. Eventually I left a message saying he had two hours or it would be on the front lawn, and by the time he got there, it was mostly on the lawn. He was horrified, how dare you, blah blah blah. We did give him weeks notice, but he refused to budge. I think he found a garage to store it in, but I'm sure he uses some of it at the Side Show he runs today. 

More about Mike and that house. We moved in there together with Andy. Mike was a musician and one of the older bike couriers in Calgary. Andy had a different girl come out of his bedroom every day, which wasn't in itself a big deal, but his drug addiction was. For his own good we kicked him out, and he had no choice but to go home to his parents. Sometime later I heard he was counselling teens and thanking his old roommates for giving him up the kick in the butt he needed. 

My room was the big bay window in front, I guess at one time the living room. But we actually had two living rooms more, anyway. Then Andy's room, a TINY kitchen, bathroom, then down back was Mike's "area" - a huge bedroom with a whirlpool hot tub and sauna (that never worked, unfortunately). Mike had a steady girlfriend that he'd been with for years, but she only came over on weekends. Other nights, it turns out, Mike was sneaking girls in the back door to his space. I WAS SO DISGUSTED WHEN I HEARD THIS! However, he grew up, got married, had a kid... He's on my Facebook, actually. 

We had epic parties there. Being a bike courier and musician, Mike knew EVERYONE. I always invited the Side Show people, so our house was wall-to-wall people and it was awesome. After Bryan the Artist moved in, it was me and three guys as roommates. Seriously, no complaints over here. They were cute and talented and had cool friends! Our house was always full of people, music, and laughter.  Bryan was (I'm sure still is) an illustrator just getting his start. But I have since seen his work all OVER the place. He got his start in our basement! I knew him when!

Eventually, I moved out. I wanted my very own space, so I got a hardwood floor (always a must have in my younger days) apartment in an old building on 17th Avenue just down from the Ship & Anchor, a very cool and trendy pub. It wasn't long before everyone at that house went their separate ways. I guess I was the glue that held them together! I still miss those days, a lot. Crazy times, fun and weird people. Never forget x

Hospital Visit

Friday, March 13

I'm in the hospital AGAIN. They screwed up my meds AGAIN (this is not the first time). Thank god I sneak my own in my purse, otherwise I'd get NO sleep. I'm in the ER, where I have been all day. Who knows if I'll ever get admitted to an actual room (it's almost 11:00 pm now) with a bed that will help relieve the pressure, even a little bit. Lying in one spot on my back is painful enough for so many hours, never mind on these beds. 

I went over my meds on my chart, individually, with an RN earlier.  Everything was settled. Everything was ordered. Yet an RN just came in here with my "bedtime meds" and they were so wrong. Like, not the chart I went over earlier (I corrected some amounts, yet the wrong ones were brought) and they were missing, oh, 5 pills. Which they don't have and they say were not ordered for me and to "talk to the doctor tomorrow". FUCK I HATE HOSPITALS. 

I'm here because of a bladder infection. Seriously! I'm pretty sure I've had the same one for a couple months. It's antibiotic resistant, so I finally brought myself in to the hospital to get on IV antibiotics. I've tried other pills doctors prescribed me ("it's antibiotic resistant, but we'll try this one...") and every natural and homeopathic remedy known to mankind, but it wasn't clearing up. The burning got so bad down there, we called paramedics to bring me in this morning. An IV is such a huge hassle, it was my absolute last resort. It would be nice if they could just set you up at home with them, but no, I have to be here. I don't even know when I get to go home - I get another dose of IV antibiotics tomorrow afternoon. 

I'm going to have to upload this when I get home, by the way. I have no wifi here, and my old cell phone bit the dust and I can't even use anything to contact anyone. ACK! All my lifelines are cut off! My caregiver Anna has been a lifesaver. She helped me get here today and came back tonight to set me up. She'll be back in the morning with coffee and a scone. I've left her with phone numbers to contact everyone, since I can't! Thalia is off this weekend, so Anna has my back. No shower tomorrow morning as I normally would! YUCK!

Saturday, March 14

They finally got me admitted to a room this afternoon. Wow, over 24 hours in the ER! I am awaiting my second dose of the every-24-hour antibiotic and am hoping they get my bedtime meds right this time. Oh, and I get a needle in my belly for blood thinners, too. Since I'M NOT MOVING. 

My dad took my cell phone in today to get that working again, so at least there's that. I can text people. At 40 cents/minute, I'm not calling anyone. I also got a private room. That's a positive. As Thalia said, "at least it's a PRIVATE hell". I'm in a bed with that air mattress that moves, to prevent pressure sores. Not that it helps MUCH, but it's better than the bed I WAS in. I need a monkey bar, though. Badly. But of course physio has to order it, and they're not in until Monday. 

It doesn't sound like I'll be getting home before Monday :( I need a lot more of this antibiotic. The burning is still CrAzY and it should be a lot better by now. I hope this second dose helps, the doctor said it's super strong and should! I think I left it too long and had too many useless antibiotics in my system. So now I need to wipe the slate clean. 

Anyway, it's after 4:30 now. Dad is coming back with some decent food and a couple things from home I need. Anna will be here around 7:00 to give me a bit of a rubdown and wash my back. I'll also need an enema. Being bedridden and bowel movements don't mix, by the way, and I need to get this out of me! 

Later that night...

Thalia came too, and her and Anna just left. I never did get my fleet enema, apparently a doctor has to order it and it's Śaturday night, so... I did, however, get a couple other things. A big chair so we can use the lift and move me over there sometimes, AND a bigger bed. Not as wide as at home so I still can't roll over by myself, but better than I had. 

Oh, a doctor was just here, and told me the phosphate in the fleet enema interacts with my antibiotic. So, there goes that. He also told me the amount of stuff I take for sleep isn't helping me sleep. Newsflash! I sleep terribly anyway, I guess that's not helping much. Sigh. So he's giving me less because they've never seen results with more! Okay, fine. At home I split them up differently throughout the night and get an hour or two at a time. 

Anyway, when Anna and Thalia were here we were talking about my death and how hard it's going to be on everyone, especially my family. It tears me up because it's a choice I'm making, and I don't want to hurt them. But for me? IT CAN'T HAPPEN SOON ENOUGH. Oh my god. I wish it could be now. Especially now that I'm once again in a hospital bed. Nobody can understand the pain and suffering I'm going through here! 

Sunday, March 15

Wow, this is going to be so long before I can post it!

This morning Anna came and with some help, got me showered. Not an easy task for anyone, me included, so cold and uncomfortable!! But all's well that ends well, as I'm clean and dry now. However, the doctor just came in and said I'd be here for at least a couple more days. ARGH! They're going to change my Foley catheter sometime today, they said that might help. These antibiotics should be working by now and the fact they're not is worrisome. This is the strongest they've got! If this doesn't work, I have one hell of a resistant infection happening here. 

Evening - changing my catheter didn't help. I'm still burning :( tomorrow is Monday, so I'll be assessed by physio and also psych... I made the mistake of telling my doctor when I got here about my plans when that law comes into effect. However, it's NOT law yet, so in the meantime they follow protocol. That may be another reason I may be here longer. FUCK. Psych has to assess me and be sure I'm fit to go home, or I'll be checked into the psych ward again. FUCK. Me and my big mouth. I need to tell them whatever they need to hear to let me out of here! If they can send me psychologist who does home visits, I'll absolutely take that. I don't want meds, but I could certainly use someone to talk to. I need to cope for another year. 

Anyway, I'm set up for another night in hell...

Monday, March 16

I officially have e-coli in my urine. Cleanliness is so important!! It's difficult when you need to rely on others to clean stuff. 

Today was busy and hellish! The O/T came in and the first thing I said was "get me a monkey bar over my bed!" She asked for photos of my setup at home, and that they'd try to replicate it best they could and get me back to my "baseline" (how long am I expected to be here?!?!) then she left. No physio, no nothing. Òh, but apparently she "assessed" me and that's good enough. Then I got a totally lousy excuse for a sponge bath. Then a doctor from psych came in and talked to me, I think it went well. She said she'd be back later with another doctor. Then my dad came, and Thalia messaged me from my apartment, so I asked her to take photos and email them to my dad. He then promised to print them and come back later. 

Then Thalia arrived, and was starting to stretch me when the psych doctors walked in. Because I had talked about her in my first interview, that doctor took her out in the hallway and they spoke. It's always good when Thalia talks to them, it helps them see I'm not crazy lol. While I was talking with them my mom arrived! It's been busy. After psych left, I visited with mom and she played with my ultra-fancy bed. She found a vibration setting so I got a bit of a massage! 

Then she left, and real hell began. I'll try not to get into details, but I spent over an hour trying to have a bowel movement, with two nurses, a couple water enemas, manual de compacting, and a difficult clean up and bed change. Then I was set up for supper, and my friend Shawna walked in. Just in time for me to feel sick to my stomache and have a bout of diahrrea. So then came another difficult clean up and change. Now I'm lying here with no gown (I think they got tired of changing it) and a diaper in case it happens again. I LOVE MY LIFE.  

Anyway, while that was going on, Thalia arrived. Then my dad. Then Shawna left. Then dad dropped off the printed photos and left. Then Thalia set me up for the night, and she left. So no stretches today, rub down, or Japanese Mint oil on my sore muscles, as there was no time without Thalia being interrupted. ARGH it will be an even rougher night. Tomorrow will hopefully be better

Tuesday, March 17

I got wifi tonight! I'll upload this. 

Today was a diahrrea day. Dad brought me Imodium and Thalia brought me burnt white toast. I'm going home tomorrow around 5:00, and I don't want this following me!!! I'd rather be constipated for a few days. This clean up isn't easy for anyone. I think I had four bouts. 

Five days on this antibiotic is the maximum, so I better be cured. I'm still burning but I'm hoping it's partly in my head from being in this position and will feel better once I'm in my own bed. Diahrrea doesn't help... It's how I got e-coli in my urine to begin with! And they never clean you properly in a hospital. Swear to god. I don't know how these nursing assistants passed their exams!

Anyway, transport was booked for 1:00 and then a psych doc came in here freaking out, "we need more time to gather resources! Dr. Mohan is working so hard to set stuff up, I know it's really frustrating for you, but we need more time." They think if they can get my pain under control that would make my life better. Sure, perhaps, but not THAT MUCH better. And I've tried everything for pain, they don't work. But they swear they will think of something, so I will let them try. 

Anyway, it's time for me to sleep. Paramedics will bring me home on a stretcher and lift me straight to my chi machine! After that I'll get lifted to my own bed and start fresh on Thursday with a shower. I'll use my lift for awhile and practice standing and exercise to get my legs back. Wish me luck!

Wristband

So, today my caregiver took me to the mall for a bit of shopping. One thing I really needed was a jumbo rubber wrist band. To move my right arm, I wear a rubber wrist band on it and use my left hand to grab it. Any charity wristbands are too skinny and break easily, so I need a Jumbo one. Dollarama had them last time, with words like "Hope" and "Brave". "Brave" was cut off me by paramedics last year, and "Hope" I've been wearing since then. Through overuse it has stretched and falls off easily. Time for a replacement. So we look in Dollarama, and they have ONE word left in two colours. One word. And it is?

LIVE. 

I laughed my ass off. 

***UPDATE*** 

My awesome caregiver Thalia worked today, bringing a couple new wide rubber wristbands with her, having NO idea I'd bought the "LIVE" ones the day before. She found them over the weekend, and they say "I LOVE CANDY" and sparkle, with words like chocolate, gum and sweet. Much more appropriate! She didn't even need to be asked to switch them. 

Dying With Dignity... So Much To Do.

I had a visit tonight with a friend of mine who says it's IMPERATIVE I write the book of my life and if not, I have a year to make voice recordings of my stories and she'll write it. Either way, I need to leave her a voice recording she can listen to for the rest of her life. She won't be able to come cry on my couch anymore (not that she did that a lot - but, boy trouble - you know) so I need to leave her something. 

You know what THAT means... I'm going to have to do recordings for everyone! I was thinking today of all the letters I'll need to write, as well. My Social Worker was here today and we got my personal directive taken care of, but there's not a lot to know yet. I'll have to do up a proper Will and stuff, but she said to call her back in 6-8 months and she'll give me a lot more inside info. She's on an Ethics committee and works for Alberta Health Services, so she'll be in the know. 

I have been writing to all levels of government to tell them I want to be involved in the SCC ruling conversation, how it will be implemented in Alberta. I want to be at the head of the line! I don't want to wait a year for the doctor-assisted death law to come into effect, just to need another year to get psychiatrists to see me and other doctors and blah blah blah. I've seen comments from some people that are devastated by this news - "what will this mean for my aunt with dementia? With handicapped people who feel pressure to kill themselves? For unborn babies?" PEOPLE! It is a CHOICE. You need to be an adult of sound mind and be able to decide for yourself. 

There's so many questions and comments going around. I'm attending a webinar meeting with Dying With Dignity on March 5. One major problem is, we have a Federal election on October 19. So will they debate it and pass legislation before then, or just leave it for the new government? Things need to be in place by February 6, 2016. The SCC said that even if a law isn't drafted by then, the SCC ruling stands. Whew. 

There's losing your mind when your body is fine, and then there's losing your body when your mind is intact. What's worse? I only know what I'm going through. And I can't WAIT to be able to end this. My Social Worker asked me to describe my pain, and why I don't take something stronger, like narcotics. I don't even know how to describe it. I live life at about a 5 out of 10 on the pain scale, (except for my right arm which is usually an 8) and then about 10-20 times a day I get flashes of it going to 11 - my bladder, muscles, joints - and I do take lots of supplements for that. That couldn't be stopped by a narcotic. And as for my general pain, I take a medication at night that's a narcotic blocker (LDN). I've been on it since 2002. The benefits of LDN (low dose naltrexone) are many, and I can't imagine how much worse I'd be without it. Any little bit of energy I do have, I attribute to that. My fatigue isn't NEARLY as bad as others with MS.  I also don't have the nerve pain so many others complain of. I went off it for a couple weeks when my leg was broken and I needed to take narcotics for pain. The DAY I went back on it, I felt like a human again. I don't want to go without it. I also think if I was on narcotics for pain, that I'd be truly bedridden and unable to transfer without a sling/lift. I'm so dizzy all the time as it is, I don't need that to be worse. 

Anyway, I've got lots to do and think about. A year is a long time I guess, but doesn't Christmas always seem to sneak up on us, unprepared?

Supreme Court Decision!

I'm very, very happy that on February 6, 2015 the Supreme Court of Canada agreed 100% to overturn the ban on doctor assisted death! I'm so excited about this. What I'm NOT excited about, is that it doesn't come into effect for a (very long) year. AND because our healthcare is run provincially, the provinces need to go about setting up the system how they want, and I live in a very conservative province. I'm a little worried they won't make it easy. The Federal Government can decide to pull rank and change the decision, but they said "it's not likely".  84% of Canadians want this. The SCC law is clear, and I 100% qualify for it. So, I have this year to get my ducks in a row and plan for my death. At least I can see an end to my suffering, and for that I am very, very grateful. 

People who are around me all the time, and especially those who've known me for years and seen the decline, are also happy for me. Except a couple super religious caregivers that I don't plan to mention it to (they may never come back). But it is hard, when someone asks you "so, what's new?" And you FINALLY, for the first time in years, have an answer that doesn't involve caregiver turnover or a new pain or weakness, and it's not appropriate. "What's new? Oh, the SCC is finally going to allow doctor assisted death so I get to die soon!!! I'm so excited!!!" Doesn't really make for a great casual conversation. I really hate that "so, what's new?" question. I'm in pain 24/7 and struggle like hell to get through a day or a night. NOTHING IS NEW WITH ME, EVER. 

I'm sorry if you're not around me 24 hours/day and don't see it. I mean, I'm not SORRY you don't see, but it's hard to understand if you don't. No one, and I do mean NO ONE, has seen what I go through at night. After I'm put to bed and set up for the night by a caregiver, no one sees me until they come back for my morning routine the next day. And the struggles I go through all night are insurmountable. No one sees it. No one hears it. It's horrible, and I wouldn't wish it on anyone. 

The struggles I have while my caregivers are here to help me shower or exercise or whatever, is SO not fun. For anyone. I mean, HCAs are trained and it's their job to help you, but it's hard and painful for all involved. My muscles, that I work so hard to exercise and try to keep strong, get weaker and weaker. Every move is harder and harder for me. I say "owww" or something similar all day and night. I never know when I'm going to choke or cough because my throat just decides to close off and not let me breathe. I need water to get my swallow reflex back and to open things up. It happens a LOT. I never know when my muscles will stiffen and/or spasm to cause me immense pain. Yes, I take meds and supplements for that, which don't seem to work. I get botox shots in my bladder (day surgery 2x/year, LONG, HARD, painful day of being poked & prodded for very little relief). Botox on my most-useless-yet-most-painful limb, my right arm, hasn't worked after two painful tries. 

I went out on Friday night. Yes, it was nice to get out. It was so great to see people I rarely see, and hug people who are amazing and wonderful. But it's Monday night, and I'm still recovering. The whole night, as much as I wanted to just enjoy myself, I was uncomfortable and in pain. I wanted to want to stay, but I just wanted to leave the whole night. I smile, but I'm not feeling it inside. I had to sit in my wheelchair for several hours, which is basically torture for my legs and knees. Getting wheelchair leg lifts is impossible because of my size, unless I get a whole new chair. And since it barely squeezes between doorways now, a new, bigger chair isn't a choice I have. I'm miserable. My life is miserable. 

Any good people see from me, is me covering up what I'm really feeling for their benefit! No one wants to be around a Debbie Downer, so I often put on a brave face. I'm not an inspiration, I'm not 'so strong". Being in pain and suffering for so many reasons because you don't HAVE a choice is not brave or inspiring! Having the choice soon, is such an exciting freedom.

As most people know by now, I attempted suicide last March. Well, I prefer I "wanted my life to end" to the word "suicide". I wrote my goodbye in here, followed by the one where it didn't work (I'd link it, but I can't do that on an iPad app). I'm even worse than that, today.  I am NOT depressed or have any mental illness whatsoever, my actions were completely reasonable and sane, albeit unsuccessful. I was very upset that it didn't work. That I was rushed to the hospital and stayed bedridden there for over two weeks, including a couple days in a psych ward. WORST experience ever! I never fully recovered from that inhumane treatment (staying in basically one position the whole time, no shower, no stretches, no nothing for two weeks). They care more about keeping a body alive than they do about any sort of quality to that life. My visiting caregivers did what they could, from stretches to cleaning me properly to sneaking in homeopathic meds for my RLS. 

My life is over, people! I'm through with hoping for a miracle. I spent years and loads of money on all that stuff - alternative treatments, special diets, positive thinking, visualization, lessons/books/movies/audio by Deepak Chopra, Louise Hay, Wayne Dyer etc. I'm DONE. I am so over it. I'm tired of trying so hard. Except for my exercise which is DAMN hard, but I can't imagine how much worse things would be without that. And my supplements. 

For those of you who convinced me the suicide didn't work for a reason, and that God has a plan for me (I've been hearing that one for so many years now!) I'm here to tell you, this is His plan. I had a great life, but it's been over for a long time. I've gotten so much worse over the past few years, I don't even know where to begin. But let me tell you, my suffering is unbearable, and I can't wait to die so it can end. 

And for other people in my position, are we not THRILLED?!?! So many people are suffering and in pain, and in a year, if we choose, we can end it. Not everyone will make that choice, but I sure will. I don't have a husband, I don't have children. I believe the last time I had sex was in 2006, and I will NEVER have it again. Just imagine that for a moment... Wearing an indwelling Foley catheter, which only caregivers see and clean, and never being touched or held in a loving way again. You can't even cuddle up with yourself, because your body is too paralyzed, stiff, sore or big to move that way. Masturbation isn't even possible. I could go on, but I think you get the picture. 

Yes, I have my cats. I love them. But I will not live for them. They will be taken care of. I will not live for anybody else. I know it will be unbearably hard on my parents, brother, and other people who love me. But I know they will eventually realize that it's the best decision for me to end this hell I've been living in for far, far too long. 

Anyway, it's a year away. It can't come fast enough for me. 

Single Men

I got my first computer with Internet in 1996. I had left my job at the Irish Rovers Free House (for "moral reasons", more on my adventures there another day) and not taking a vacation day during my (almost three) years there, gave me a nice lump sum cheque. Which I used to purchase my first real computer. 

I remember setting it up in the corner of my bedroom and plugging in the dial-up modem. I set up an email address, and I'm pretty sure I was set up in Windows 95. I used my Netscape (!!) internet browser to get to whatever search engine was used the most at the time (Google didn't even exist yet!) I looked at that little search box. I could type ANYTHING in there, and find information about it?!?! The idea was overwhelming. 

Kids today, seriously. You have no idea. 

I typed in SINGLE MEN and hit Enter. Why not?

A ton of links came up. The first one was American Singles. I clicked on it. 

So many profiles! Wow! I don't even remember how online dating profiles worked back then. I think it was free to post a profile, but you had to pay to message anyone. But it was free to receive a message. Or it may have even been free for women, period. All I remember is that I didn't send any messages, but on a whim I decided to create a profile and see what happened. 

I swear it was within minutes that I was receiving emails! Mostly from men in foreign countries like Egypt and Turkey. Declaring their love for me. Sending me pictures. It was crazy! It was also a lot of fun. I didn't engage with any of these men, declaring their love for me based on an Internet profile with no picture was a bit much.

One email was from a guy in Russia. He had attached a sound file, and his email actually sounded like he was a decent guy. Ah, first time interneters, we knew nothing. The sound file was of him introducing himself, and hoping we could stay in touch. He probably edited my name in there, as it sounded personal. He said he worked in computer animation, and really wanted to get out of Russia. It sounded awful... He went into a lot of detail about his horrible life there. 

I decided to email him back. Over the course of maybe one or two days, we corresponded a few times. And now he decided he loved me, and sent another sound file. THIS one was a marriage proposal. THIS one was generic, and he didn't even say my name. THIS one was probably sent to all the different women he was corresponding with in North Anerica, hoping for a bite. He never heard from ME again! I wonder how that worked out for him, if he ever got out of Russia? 

I think I did keep my profile up there for a long time, even though the craziness slowed down. I eventually put a photo in my profile, a good one, of course. I went for coffee with one man I met on there. We didn't talk long, it was more of a "you're in Čalgary? I'm in Calgary! Let's meet...." it didn't amount to anything, and I never talked to him again. Not that I was interested, but I'm sure the fact I had been diagnosed with MS and by then was using a cane (it must have been 1998) wasn't a huge turn on...