Sunday, August 30, 2015
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.
Saturday, August 22, 2015
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.
Sunday, August 2, 2015
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.
Thursday, 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!
Thursday, May 21, 2015
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.