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