News

CTV NEWS Enough said.  

The Plan is in Motion

I think my caregiver Thalia summed it up best: "Losing my job and my best friend on the same day is gonna SUCK". Yes, it is gonna suck. For everyone. 

Writing my own obituary is creepy. But it's happening. My plan is in motion, if everything works out I should be gone in about 3 weeks. I talked to my parents about my plan today. I've never seen my dad cry. I feel horrible for feeling so relieved! I'm happy and excited, yet I cry for the people around me who have to go through this. I still have to make sure of the laws - I figured out a way that I won't need assistance, but I would like my parents and a few friends here that evening if it's not illegal - for people to be in the vicinity and know what's about to happen, and let me. I think my mom wants to be here either way, but I will NOT let her jeopardize her freedom. 

I'm going to be on the CTV National News this week. It's partly about my wish to die, and partly about how the physician assisted death law should be part of the election campaign. Where they stand on the topic is many people's deciding vote on October 19! The Conservative government has already asked for an extension, is very much against it, and are dragging their feet on legislation. Anyway, the news interviewed me and filmed me from head to toe - Thalia was here, so they filmed me transferring into my power wheelchair and going outside. I mean, head to toe, people. All my fat on display. Hella embarrassing, but necessary to give a glimpse of my day. The cameraman was so nice. He hugged us both goodbye and you could see the tears welling up in his eyes. I guess I'm so used to my transfers and how painful they are now, I forget how hard it is for someone else to watch. 

Anyway. The Plan is set, I just have to get my 'stuff" and hope it all works out. 

The Time is Near

I absolutely can not wait for the doctor assisted death/suicide (whatever you want to call it) law to pass. I mean... I can't wait any longer. I'm writing this blog post to let anyone and everyone know - my plan is to end my life ASAP. I can't even explain what I go through in a 24 hour period! No one should need to live like this. I'm so stiff, sore and spasm constantly. Meds don't help that. I live with absolutely no dignity - I can't even move without a caregiver's help, never mind cleaning, washing, bowel movements, catheters. You just don't know. No one does. I'm so sick of it. Every day is harder than the last. I procrastinate going to sleep because the next day will come and then I have to do everything all over again. The pain, the suffering, the struggles - I can't even explain how bad it s.

So I watched a documentary on Netflix called "How To Die in Oregon" about the assisted death law there. It was REALLY good and got the point across. They showed a man named Derek Humphry, who wrote a book called "Final Exit". I immediately bought and downloaded it to my Kindle, read it, and now have some ideas on how I can end my immense suffering (end my life) successfully. I plan to do it very soon. I can't wait for the law and legislation to pass and whatever hoops they'll make me jump through before I'm granted my wish to die with the aid of a doctor. I have to do it myself, and soon. 

I still need to buy some supplies and get a few more ducks in a row before I do it. I'll need some help - I can type/print letters and documents, but I can't get them myself for signing. They're supposed to be beside my body. I can do the actual ACT myself, but I will need assistance to prepare. Is that within the law? It's not illegal to commit suicide, but it is for someone to help you. So I need to find that person.  I'm not sure of the laws here so I need to find out. In the U.S. it's okay to watch someone kill themselves and do nothing, but I'm not sure about here. I still have some digging to do. 

I desperately need someone to help me. But  I can't ask family or anyone close to me for that kind of help! The risk is too high, emotionally they couldn't live with themselves and they'll all be questioned, so I don't want them anywhere near me. It has to be someone not connected to me. But I need to make it clear through a signed/dated letter that it was 100% my idea and wish, that I'm of sound mind, and I thought about it rationally and did it myself. No one else can be implicated. But they will have to make sure I'm dead before they leave - so that narrows the field considerably. Someone who supports this 100% isn't hard to find, but someone who can handle checking a dead body for a pulse? Ouch. 

I wish I had done this earlier, when I was still mobile and could do EVERYTHING regarding suicide for myself. But I was too busy living my life and it never crossed my mind, how quickly things could turn. I didn't read the books or research this subject at all. I never thought it would get this bad. I never thought...  Sigh. Not that I'm telling ANYONE with a progressive disease to do this. I'm a special circumstance - the speed in which I declined has a hell of a lot to do with those paramedics who broke and twisted my leg so badly on Septemberr 21, 2012. Before that I could still get up on my own and walk a bit. The decline in my health since then is overwhelming to think about. My anxiety is through the roof when I do!

Anyway, I just wanted people to know, that's my plan. So no one is shocked when they hear of my death. Finding that person may take me quite awhile, unfortunately. 

Good Media

So I did my interview with CBC, and they put me on the Homestretch July 6 (which was pretty damn good at explaining my position, if I do say so myself) and it was a news item on their website July 7. That lead to an Editorial in the Calgary Herald where they mentioned me by name, but still think the government should "go slow" on legislation. Ridiculous. They ask for an extension, they table it - it's not going to be any better. They'll just procrastinate and suffering people will go on suffering. It's not fair! I hope the Supreme Court doesn't grant them an extension. 

I understand if a psychiatriic evaluation is needed to show you're not being influenced or coerced in any way and that you are of sound mind. What are they going to offer me - a magic pill? I've been on everything. Nothing is going to make me get myself up in the morning, shower myself, get off a Foley catheter, walk myself to my commode to poop on my own, walk PERIOD, stand alone, travel, go out and about, live any sort of life. Give me a break. Are they going to give me a pill for THAT? I don't think so. My caregiver who worked this morning said (after I played her my CBC Homestretch podcast) "I wish I could take you out so you could get some joy out of life". I go out. I see things. It's not about that. My day-to-day is insufferable and I can't remember the last time I had dignity in my life. I'd like to have some in my death. 

I watched a movie the other day, "Time of my Life" about a man with MS that fought to get the assisted dying law in Belgium in 2002 and was the first to utilize it. I really need people in my life to see it. I'm worse off than he was, and I also don't have a son like he did. He left behind family and friends as well, and fought through the nay-sayers. I just had one here today - a pastor and his wife, that my mom brought by. I listened to him preach for over an hour about God and the bible and how we are not to decide when our lives end. He kept saying "I understand" and he sympathizes and he's so sorry and blah blah blah. HE DOES NOT UNDERSTAND. Nobody can say that. He talked about family and friends who have suffered and that he knows what I'm going through. PLEASE! You do NOT. And, I'm not going "through" anything - there is no end to this.  Nothing to get THEOUGH. If I could get through it, I totally would. But there is no end until my life ends. And I'd like that to be sooner rather than later! Sorry, nay-sayers. You can't make me change my mind no matter how much you try and instill the fear of God and Satan and Hell into me. God knows my plan. He supports me, I'm not worried about that at all. My mom, by the way, supports me in this decision, as hard as it is on her. She didn't know that pastor and was really mad at him - it was SUPPOSED to be a discussion, not a preaching session. He was supposed to hear my side, but all he wanted to do was talk about his. He made me SO mad. 

Anyway, this was to be posted awhile back but as usual I procrastinate and write a little bit here and there without posting! If you google "CBC Homestretch" past episodes, scroll down to July 6 and you can hear me talk about Assisted Death. Or download the July 6 podcast, which is how I listen on my iPad. 

July 2, 2015

Whyyyyy don't I update more. I'm too busy watching TV and listening to podcasts. AND PLAYING CANDY CRUSH.

So, caregiver turnover, hiring and training has been nuts. Two people had to leave me and three new people have been hired to do their shifts. In the morning Thalia is coming because one of the new girls already called in (or emailed me at 10:30 pm) sick. Not a good sign...

The power will be out from 9:00am to 3:00pm on Tuesday. I can't even BEGIN to tell you how that will affect me!! Huge. Caregiver re-arranging and shower re-arranging and getting up way too early and needing to be out the entire day! I hate doing this to new people. This week was different because Tuesday morning was my Botox at the hospital, and now next week has to change, too. Never mind that one girl is on holidays until the 15th. It's crazy here and I'm stressed!

I may be doing a radio interview on Monday. It's to do with the fact that physician assisted death becomes law on February 7, but our Federal government may ask for an extension because they're not ready to draw up legislation. That's nuts!! They put things through so fast when they want to. This is a ridiculous situation. People who are suffering should not have to wait even an extra HOUR for this to be available. The Canadian Medical Association is trying to put together some policies, and they suggest a 22 day "cooling off" period. As one person commented, "my father was diagnosed and died in 21 days! It was an ugly, painful death..." 22 days is far too long. It's acceptable for someone like me who has a disability/chronic condition, but certainly not everyone. No matter where you stand on the topic, it is going to be law so legislation and regulations need to be drawn up.

Also we're going to discuss the fact that my federal MP has never responded to me! I only have copies of four emails from this past year, but I have written him and my previous provincial MLA many times over the years and NOTHING. A new MLA for my area was finally voted in May 5, (when this province went NDP after over 40 years of a Conservative government!) and she responded to me IMMEDIATELY. No action that I've heard of, but at least she responded positively. I just want to be heard. 

Which is why I may be on the radio. This was set up because a woman wrote a blogpost in Huffington Post, and I commented that I wanted to talk to her, and somehow she found me through the MS Society and we chatted. She is making media arrangements because she thinks people need to hear from people like me. Not because she has a stand on the subject, I don't know where she stands, but she's a lawyer and since this will be a law, we need legislation. 

So if I'm interviewed anywhere, I will certainly post the details!

Service Call

I have to write about this because I'm absolutely amazed. There really ARE good people in the world.

My bed broke this morning. I mean, I have a double sized Rotec adjustable bed that raises, lowers, head up, feet up, railings, and a monkey bar overhead. it was $8.000. I can NOT live without this thing. I got it after the "accident" and 4 month hospital stay in 2012/13 when I could no longer walk or stand independently. My caregivers can't work on me if the bed doesn't raise up, I can't get out of bed if it can't be raised up, I can't sleep in a flat bed anymore, (I can't even explain how much worse things have gotten in the past two years) no way, no how. So you know how important this is to me!

Two months ago they finally replaced the circuit board. I had been having problems with it since Day One. Service techs would blame it on the controls or motor and replace those parts under the warranty, but still no luck. Sometimes we up/down/up/down 20 some-odd times before it would finally go. I wrote a scathing letter when they invoiced me for my last visit since I was no longer under warranty. It was the same problem they had NEVER fixed, and this guy didn't even TOUCH the bed, and charged for the visit AND labour. I was furious, and cc'd the makers of the bed in Montreal. I caught the attention of the owner, and FINALLY got the help I needed, and a new circuit board. Everything was fine after that. Until this morning. 

Last night it moved up suuuuuper slow. My caregiver said she noticed it in the morning, when she was making the bed. By this morning, it just stopped moving altogether and made beeping noises when buttons were pushed. I freaked out! I had to be sling/lifted to get out of bed. I called Medichair (who I got the bed through) and their service department told me their mobile techs were too busy to come. I was freaking out, where will I sleep tonight? They said they'd send someone tomorrow. 

In the meantime, Thalia put me in my sling and lifted me to my recliner (there was no way I could stand in the evening, I'm in bed super early even though I'm not asleep. I adjust the bed for watching my iPad) She was planning to come back at 9:00 and lift me to my bed, which after a rubdown I'd try to sleep on my side on a flat bed. I was not looking forward to it. 

Around 7:30 pm I got a surprise call from the service manager at Medichair. I had been emailing with Medichair, telling them they better have a rental I can use while waiting for a parts order, as I'm not going to a hospital!! He mentioned he had a circuit board from a similar bed that might work, and could be here in 40 minutes. WOW HOW AWESOME WAS THAT?! He brought everything over, and was in my room for awhile. He told me the circuit board wouldn't work with this bed, so maybe the batteries were old and he was charging new ones. Thalia arrived to do my bedtime routine, but we just did what we could while we waited. He was finally done close to 10:00 - he said that the batteries were fine; there had been a fuse blown from a power cord that got squished. He's ordering new stuff, but in the meantime he used the cord and fuse from the other bed, even though ithey're not quite right. He set it up so it will work for now!

So Thalia lifted me onto my bed and it's all working again and I get to sleep here! That service manager went ABOVE and BEYOND the call of duty. To come over in the evening, and do all that?! He said he knows how important it is to sleep in your own bed. ANGEL! I've got a large invoice coming my way now, but ohhhhh it's worth the credit card debt. 

Toronto, Part Two - Covenant House

Time to continue on with my Toronto adventures. The last I left you, it was December 1986 and I had just arrived and was spending my first night at Covenant House.

Morning came, and I quickly learned more Rules of the shelter. I explained a lot of them in my earlier entry, and now I would be putting them into practice. Breakfast was cereal and/or toast, and was eaten, like all meals, in the main house kitchen. It was during my first morning that I met Bob, my first friend there. He was gay, and staying at CH because his parents had kicked him out for it. To be honest, in the mid-80's, I think many gay people were still closeted. I was wondering about this the other day - when did I first learn what "gay" was? I don't remember it ever being an issue, thankfully. I'm sure several people I knew in school were gay, but definitely closeted in that white, rich, conservative area I lived in during the 70's/80's. But my parents didn't raise me to judge people, which is good. I'm very liberal in my thinking today, and have always had a mind of my own, which didn't include thinking gay was wrong or anything. 

Anyway, I digress. So I met Bob, and together we mopped the kitchen floor after breakfast. Everyone had to pitch in with chores. It was the weekend, so no one had to be anywhere. Normally, after breakfast the place empties out by 9:00 as everyone goes to work, school, or job hunting. Or panhandling on the street, as I soon learned many of them did, instead of looking for jobs like they were supposed to! The main house was set up with the big dining room, two bathrooms, and two living room areas with televisions and sofas. There was a staff table by the washrooms and a locked office area, and a room with a telephone you could ask to use. No one could call you there, just leave a message as the staff were not allowed to say whether or not you were staying there. The front entrance was always manned by a staff member to buzz people in; the front door was unlocked but there was a locked glass door, so they could see you to buzz you in, or ask visitors to wait. Many kids were there hiding from pimps or certain people, so no one was told whether or not you were there. Behind the entrance was the staircase up to the sleeping quarters, laundry, and showers. 

I was the new girl, and cute, blonde, blue-eyed, big boobed blah blah blah, so I got a lot of attention from the guys there. And I was nice, funny and self-deprecating, so the girls didn't hold it against me. In fact, it was the first time in my life I actually felt POPULAR. All the boys liked me, all the girls wanted to be me. Even the girls that gave me dirty looks at first, warmed up to me very fast.

There was this one guy, Steve, who was gorgeous. I'll admit most of the guys there looked like they dropped out of a Wayne's World skit, but this guy was different. He was tall and thin, had dyed blonde punky spiked hair, pointy shoes, long black trench coat - you know the type. Very cool in 1986. He was staying at the intake house where the overflow of boys went, and came over to the main house for supper, an hour after we ate. He was so good looking and intriguing, I sat down beside him and we started chatting. As we talked, I swear every other guy came up to him and whispered in his ear that they were going to kill him, beat the crap out of him, and they'd "get him when he was walking back to the intake house". He was NOT "their" type of guy. He tried to shake it off like it was nothing, but I could tell he was terrified. I took it upon myself to talk to the staff, and ask that someone walked back with him. It took a few days, but he was fast-tracked over to the main house when a boy's room opened up, and I talked to all the guys to tell them "Steve is cool, leave him alone..." And they LISTENED because I SAID IT and they LIKED ME. I SWEAR. Steve and I became very good friends. Bob was jealous of our friendship, but learned to like him as well. 

So, my popularity there was no question. However, it didn't stop the girls from stealing my stuff. It was usually girls who were just there for one night before they left or got kicked out (once they realized it wasn't a free ride). We put our dirty clothes in the laundry room, and the overnight staff would wash and fold it and put it in piles for us to pick up in the morning. We didn't have a choice, so many of my clothes were stolen that way. Also hair products - I had great hair and brought a curling iron and products with me, but they were taken. All the girls shared one big bath/shower room (think Orange Is the New Black) so all you had to do was look away for a second and it was gone. Do not bring ANYTHING nice to a shelter!

I didn't really have a plan while I was there - the find a job/place to live plan - as I was honest with them, that I worked at the news stand and was leaving town on December 27, so I just needed a place to stay for a couple weeks. They were kind enough to let me stay there, as long as I followed all the rules and everything. My popularity stemmed to the staff as well, as they all liked me, too. I was pleasant and nice. They were actually filming a documentary while I was there, and since I didn't have a heartbreaking story, I just watched as they interviewed everyone else. "My mother was a prostitute, my father was her pimp, I lived from foster home to foster home, I was abused/molested, my foster father raped and impregnated me, my baby died, my baby was fathered by a pimp, I'm currently pregnant by my father..." Stories like that, one after the other. It was unbelievable. That's why my fresh, innocent face was so liked by the staff, and my kind heart was so liked by the other girls. I didn't fit in there, but somehow I was their leader. 

I wasn't sleeping on the floor for long, as the turnover could be pretty high there. So I was given a bedroom to sleep in and keep my things in pretty quick. (Floor sleepers were given a locker to keep personal things in). One floor was girls, one floor was boys. The bedroom doors were locked by 8:30 am and opened once in the afternoon if you needed something, and then not again until bedtime. There were meetings every night in the main room, where you could air your grievances, but rules are rules so it's not like things changed. Sometimes the meetings were more like what I imagine AA meetings would be like - sharing stories and making announcements (like the filming of the documentary). 

Steve told me that he had plenty of places he could be staying, but they didn't force him out of bed and out the door with three meals/day and a room to sleep in at night. And subway tokens to get to/from work! He needed the routine that CH provided, but "if you ever need a place to stay, I can help you out". (I'd take him up on that soon). CH was pretty good to you, if you were good to them. I had no trouble following their rules, so it wasn't an issue for me. Other kids had to leave for being drunk or high, lipping off staff, breaking curfew, etc. 

I was there for Christmas, and Bob and I were chosen to put together gift bags for all the residents. I guess the gifts were donated, and included things like make-up, cassette tapes, nightgowns and socks. This is where Bob's jealousy towards Steve and my friendship really played out, as he put together my gift bag and gave me the WORST stuff. I only remember the horribly ugly flannel nightgown I received, but I remember laughing as I went through it and Bob apologizing lol

On Christmas Eve we opened boxes of donated candy. It was awesome. I also received a box from my family, and since I was the only person receiving anything from my family, everyone crowded around me as I opened it. Mom used individually wrapped maxi pads as stuffing for the box, so THAT was a good laugh for everyone. I don't remember what was in it besides a sweater, and a card with a money order for $100. This would be my trip money! And since it was Christmas Eve, there was no bank open before I left the morning of the 27th, so I had to use an ATM to get $100 cash and head to the U.S. with Canadian money. 

The morning of the 27th my friend Paula met me, and we headed down to Union Station to catch our train heading to California. That adventure is written in the "What?! It's not like anyone is reading" entry!

Next I'll write about how I used Steve's connections to stay somewhere upon my return, and back to Covenant House soon after!

From My Sweet Mom on my 47th Birthday

How do I tell my daughter how much I love her?

How do I explain how I felt when I saw her and held her for the first time?

That overpowering feeling of love like no other could ever be;

looking into her beautiful big blue eyes searching my face.

Bringing her home and watching her grow – the most beautiful blond, blue eyed baby

you have ever seen, and she still is blue eyed and beautiful!

 

Her first words; her first steps; all the firsts I will never forget -

how her eyes lit up when she saw her first Christmas tree.

And how at three and four she celebrated Christmas any day of the year

wrapping dishes, toys, almost anything and presenting them to us

saying “Merry Christmas” (in July)!

 

Mighty Mouse with a baby blanket pinned to her shoulders

as she jumped from the chair singing “Here I come to save the day”!

Or the time she stood on the chair singing to a house full of company

“Frosty the Snowman” with “then one FROGGY Christmas eve”; so cute!

She brought such joy to everyone around her;

relatives all said “there is no way we will ever forget Donna!”

 

Was she smart?  You bet she was and of course still is.

Winning poster contests, drawing pictures at three years of age

beyond the capabilities of a six year old.

She sang, she danced, she played and played and loved her “Barbie” dolls.

Washing her doll clothes and dishes every day;

standing on a chair at the kitchen sink; she was three.

 

Her first day of school – I remember her walking down the street 

wearing a little blue coat and white boots holding on to her brother’s hand.

So excited she was; I don’t think she knows that I cried at that moment;

I was so overwhelmed with emotion for her and her brother.

How lucky was I to be blessed with the most beautiful children in the world!

 

Time marched on as it does; going so fast with so much to do.

I look back and ask “how many special moments did I miss

because I was so busy?  Why didn’t I write down every wondrous and new thing she did?

Baton lessons, dancing lessons, gymnastics, organ lessons; she wanted to do it all.

Running through the sprinkler – doing cartwheels in the summer time -

so blond and so tanned; I called her my “Suntan Barbie”.

 

A busy young lady she was – always excelling in all that she did.

Her first spelling mistake happened in grade three.

“Don’t put this test on the fridge, Mom” she said “because I made a mistake”!

Oh my, what a little perfectionist; we had a little talk about how it is okay 

to make mistakes, everybody makes them and we learn from them –

“just like you now know how to spell that word.”

“Okay” she said and ran outside to play; 

I taped the test to the fridge.

 

When we moved to Calgary, she was so sad to say “goodbye” to her best friend, Linda,

but she was also quite excited.

I remember looking out the window and there she was sitting on the hood of our car

just waiting for people to come by so that she could say “hello” and introduce herself.

She made friends quickly and life went on.

She loved our cat, Boots, and the feeling was mutual;

he would walk her to school in the morning and leave to meet her so he could walk her home.  What a cat!

 

Everyday after school she ran into the bedroom to see me (when my back was crazy).

She’d sit on the floor and tell me about her day; 

we would talk about just about everything.

We spent lots of time together, even though I wasn’t able to go out and do 

all the fun things I always dreamed about doing with her. 

When I finally got well enough to work, she told me she was proud of me!

Proud of me?  Well, let me tell you, I am the one who is proud of her!!

We didn’t know then what the future held for her; the battles she would have to fight.

 

I remember when I grounded her from watching “Donnie and Marie”.

She had been warned that if she didn’t tidy up her room before the show, 

this would happen.  Unfortunately for her, it happened; she couldn’t watch her favourite show!

So upset was she!  Oh my goodness; the tears flowed – 

it was as though the world was coming to an end!

And….., I felt terrible, but I couldn’t go back on what I had said, could I?  

I think she is probably over it by now – at least I hope so.

 

She was the “ice maiden” of the neighbourhood one summer; think she was about 12.

All my tupperware was filled with water and frozen; the freezer was full.

She delivered fliers that advertised ice for parties, barbeques etc., and the orders came in.

Oh, the ice was available in several shapes and sizes; logs, circles, squares;

you know, just in case someone wanted ice for a punch bowl.

What a little entrepreneur pulling a wagon full of ice down the street!

 

Organ practice – she loved to play the organ and she did every evening after dinner.

“Donna”, I would say, “You can stop practicing now because it is bed time”.

How many 13 year old kids are like that?  

She can play by ear; she played “Music Box Dancer” on the piano at her organ recital.

She was the only one who played both the organ and the piano – 

I was so proud I almost burst!!

 

Grade nine graduation; we went shopping for a dress and shoes.

We looked and looked, and finally there it was:  “the perfect cream coloured dress”.

How beautiful she looked in it with her long blond hair flowing!

All of a sudden, so grown up!  When did it happen?  Where did the time go?

 

Then on to high school and overnight (it seemed) she was moving to Toronto.

I remember crying in the elevator after she boarded her bus;

I noticed people trying not to stare at me.

I thought to myself “You idiot, people don’t cry at bus depots, only airports.”

But I know very well that is not true; I missed her terribly; she was only eighteen!

 

Barely sixteen, she was when her Dad and I separated. 

She said “Well, Mom, at least you’re not sitting on the fence anymore”!

Such insight for someone so young!

She moved into an apartment with me and we were finally able to go shopping, 

see movies and out for dinners together.

Money was scarce, but we had fun!

 

The day of diagnosis – I was at work waiting for her call.

I was chairing a meeting when her call came, and I couldn’t go back after the news.

I was frozen – I felt numb; this was not supposed to happen!!

Why my baby?  “Oh God! Please let it not be a bad case; please let her have a good life -

the life that is just beginning – PLEASE GOD!!!

It wasn’t to be.

 

She says she doesn’t feel like an inspiration,

but she is; so many people tell her that.

She is brave and strong beyond belief -

anything I have gone through in my life pales in comparison

And….., how I wish it had been different for her; I’ve prayed and prayed it would be

as has her Dad, brother and all her aunties, uncles, cousins, friends.

I wish I could fix it because I would in a heartbeat; we all would.

Maybe someday we’ll know the reason for this – but really, is there one?

 

I am so proud of her!

She started her own business and no one ever wrote better business plans.

“MS with Attitude” website was her creation and read by many.

Did I mention what a good writer she is?

Did I mention what a good bookkeeper she is?

Did I mention what a good daughter and friend she is?

Did I mention she mentored troubled teens?

Did I mention she raised money to provide a special Christmas for a needy family?

The list goes on and on; she is a special human being

and I am blessed to be part of her life.

 

Memories come flooding back to me when I go to bed at night.

Donna is now 47 and I am almost 72 – time went so fast!

How do I tell her how much I love her?

I hope I just did.

 

With love to you, Donna darling, on your 47th birthday; I will love you with all my heart, always and always.

 

Mom

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.