Thursday, September 29, 2011

Wheelchair Bowling (and a little death).

This week has been all about Death and control. I lose control when I sleep through all of Tuesday, but others, such as the Palliative in Victoria and other caregiving demand more and more control until words like ‘allowed’, ‘will let you’ and ‘will decide’ infiltrate sentences. Though care groups are set up until a broad invite, there is usually a gatekeeper, likely the moderator or a medical person appointed who ‘will decide’ if you are acceptable. In Palliative, though the people are employed to ASSIST and improve the quality of life of the person dying, and it is stated often, that would make the person dying the one who calls the shots. Is that something you can imagine? Particularly if there are some senior RN’s in their 50’s and 60’s and see the PEOPLE (they like to call them ‘files’ or ‘clients’ or ‘bed’) come and go, but they protect their small kingdom. So do many others when care giving is involved.

Should I lie here and not talk about my plans for ending my life in a dozen hours and talk about bowling instead? Or talk about the emotions that make me want to speed up, or at least control a fast moving schedule? I live now not because of any care made by any doctor (treatment is not what I am receiving, but pain killers and band aids), but because I pushed myself very hard to live. But if I live, but all that I desire to live for: quality of life, friends, energy, spending time doing things, spending time with those I love – if all that goes away, then why keep tormenting myself?

Thank you for raising $190 for Cancer with the Terry Fox, it was almost double the goal.

Ah, awkward silence means that bowling wins rather than the uncomfortable feeling of not knowing what to say.

I went bowling. It took two months, two trips to Port Angeles, planning but not a great deal of money once there to accomplish. Linda and Cheryl also came. Victoria does not have a 10 pin bowling alley as that was wiped out for a condo and business part. Joy, something we were missing, I am sure. The alley in Port Angeles is a wee dodgy, with a bar, but it does have a lane, by the side and I found a large finger ball which weighed about 6-8 lbs, none of the 10 or 12 for me. The idea of bowling is to throw the ball, which is kept on track by back and side spin and it hits between the first and second pin to get a strike, or knock a lot down. If you knock all down on the second ball it is a spare. Gutter-balls go into the gutter on each side of the lane and knock down no balls.

This was a first for me, bowling from the wheelchair and it was hard. Plus I sucked, since it was my first time. Standing bowling I can do, except I can’t stand (the damaged caused to my knee and legs from the Terry Fox precludes doing that anymore). And getting the spin and momentum from the ball is hard indeed sitting down. Yet it is an official wheelchair sport and popular compared to many, as it available without a lot of specialized equipment.

I got gutterballs one after another after another – by the fifth frame I had thrown one ball that made it to the end to knock down pins (9 gutterballs). So I asked them to raise the ‘bars’ – if you SUCK at bowling or want to have fun in the wheelchair use the raised bars which need to be set by the staff to come up on your turn. These are barriers to stop the ball going into the gutter so it is like pool/snooker, you can end up with a strike on the rebound.
I found in the UK, where 10 pin bowling is not common, that a church, or mixed age outing with those who have to use walkers or other aids, having the bars up only makes a game which is boring and sad (who wants to pay to show everyone that you can only throw in the gutter), fun and exciting as even a bad throw can get points. It is used for kids often but I have used it for adults in the UK and USA with positive results – it makes new players have fun, which is the point of bowling. For those who have arthritis, and can’t throw the ball, there is a ‘ball slide’ where the ball is placed, you aim, and then with a small push, it slides down a ramp and off toward the pins. I have used this with adults, particularly those who have hip problems or movement and shoulder or joint pain. Again, it makes a outing for all ages and abilities (the staff has this, again usually for kids, but my policy is that adaptive equipment is not age limited, and YOU are paying, so have fun!).

Linda was pretty consistent and took the lead in both games. Linda got some spares and one strike, learning to lower her knees. Cheryl had the same sort of curve as I get, a slow start, good middle, and then as fatigue hits, more erratic, but she finished well and I think we all improved over the first game.
For me, there was two scorekeeping: what I threw which went straight, and what I threw which rebounded into a score. The best I did for straight throws was a spare (all down in two throws) huzzah! After two games I could throw straight down about 50% of the time, instead of 10% at the start. While the worse I threw, the better the score on rebound. The best/worse was a ball which gripped my thumb, got thrown almost sideways and made THREE rebounds on the way down…to get a strike! I was ashamed as I had groaned with the ‘what an ‘ack’ throw’ and then I get full points for it – bah! Next time I will use the gutter blockers for the first game and none for the second.

I do recommend bowling as an inexpensive group activity which fits all ages and abilities. I enjoy it and enjoy the social aspects as well. Wheelchair bowling is very hard, and I find no cross over skills at all, but then, learning something new, while embarrassing at first, is something good to do often. I would like to challenge myself to do more new things, however humiliating.

Monday, September 26, 2011

Wheelchair Bowling and upcoming attractions

I’ve not been writing blogs because I’ve been sick. I get sick a lot now. That means inability to move, stop of body functioning, including organ function and heart erratic and pain sufficient to keep me from sleeping. Without medication every 3-6 hours I simply can’t keep functioning and after two days of that, I have completely loss of autonomic function, which would lead to death. So ‘bed days’ are like ‘dead days’ as I can’t sleep that long and if I don’t have the body and medication controlled closely, three days, or four max. I have learned over the last three days that I would MUCH rather my diaphragm fail and suffocate to death than have heart or heat problems for three days.

Caregiving stress and abuse is reported at the same percentage of men who say they have ‘masturbated sometime in their life’ – which is 92%. Even in the high end care homes, investigations found that your $6000 or $8,000 a month still ends up with 72-90% abuse of at least 3 incidents. If it is the special wing for dementia, the abuse percentage is always in the 90%+. It is just that no one talks about it.

Talking to someone tapped in about the police they said that the reason no clear instructions or guidelines on what constitutes ‘neglect of care’ or ‘withdrawal of care’ or comes in to give basic training once the disability provision in granted is because of ongoing cases. With so many cases going through the courts, including the euthanasia case at the supreme court level, if a official guideline is created, then it has a knock on effect for all cases as it can be used legally. And domestic violence and abuse in care giving are two different pathways in the law.

So the open dirty secret continues, where coming to work at a facility or coming home after a bad day, with financial problems, having the worst day, it is easy for that foul mood to end up with screaming at the one person who can’t scream back.

Linda and I care about each other. I am facing some rapid and scary degeneration. Linda is working on talking more, because without it there is no way to know what is accidental, what is ‘I just don’t care’ and what is ‘oh, you make me angry, so fine!’ When trying to step over someone or lift the head, the emotion and the pain outcome can make a huge difference. Communication helps, but being in some horrid pain already can skew the view (my view). There really is no simple answer, nor sadly and with some anger, any social support. When care agencies and the police won't print up what IS an acceptable standard of care lest their workers are held liable if they don't do it, and when there are literally 50+ caregivers coming in and out of the apartment a month, abuse will occur. Like the caregiver who found how Fentynal turns sound into pain 'interesting' and so would make various sounds to see how badly it would hurt me. Yeah, paid professional caregiver. Yet, she will not even get a reprimand, and the police hem and shuffle when asked if I should call them about this - which seemed to me a form a deliberate sadism: she crinkles plastic and watches me flinch, "Oh, so that hurts too, fancinating.", she scratches different fabrics, she plays with coins, bangs metal on metal. For a person with Neuropathy, that ended up hurting far more than having a hand stepped on (which after talking to Linda, was accidental, she was not aware she had done it so focused was she on going to work). For us, it was a call of love to communication, yet police files get involved. For the worker...she gets her $40 and moves on. Dr. Hell, in the last stages of ALS, complained about being abused by his caregiver, action was not taken because without clear guidelines, there can't be.

If you leave a child, or abandon a child, don't feed them, that's abuse - outlined in the child abuse Canada law. If you, as beacon workers did 3 times in 2 weeks, leave me naked, without food that day, no hope of food until perhaps the next day, and passed out on the floor (having workers leave while I am passed out has happened so often it doesn't bear even writing down, not 911, not check for breathing just 'my shift is over', I guess, when I come to, they are gone), that is not techically 'abuse' because there is no outlined laws or guidelines for individuals, no matter how dependant. IF you have careworkers, you will end up have a loss of care, withdrawl of care, negligence, etc - it simply hurts a lot more when it happens from those you love and who love you.

Linda is, beyond working full time, caregiving me, training up to 14 new careworkers a week, and doing job applications to improve our life quality and decrease the stress – because when you have ambulance services threatening to send you to collection agencies, as an example of how bad trying to pay for tens of thousands of dollars of medications annually when on a capped unemployment income LESS than the cost of meds, and a 13% tax on everything, there is stress. Time for me, time for Linda, time for the job, Time to come up with whole new plans as my conditions worsen, that’s all hard. This isn’t the TV drama of the week with a giant family and everyone trading off care giving, so no stress.

So now that it is rainy and blowing, think back to a few weeks ago in sunny Port Angeles. I had been trying to go bowling in Port Angeles for a while as there is no 10 pin bowling in Victoria. And I wanted to try out wheelchair bowling. And the ADA means a bowling alley in the US is going to be accessible. So I have lots of little bits, hours here and there, with the things I spent weeks and months planning. So tomorrow, I hope, it is a blog post about wheelchair bowling.

Thursday, September 22, 2011

Ill in body and heart, caregiving

I know the soul is aided,
Sometimes by the heart’s unrest,
And to grow means often to suffer –

I’m not well, but when someone has to breathe for you daily up to and over an hour an a day using a ambi-bag, fitting over the face and nose, and counting off the seconds and making sure the air goes in and the air comes out, then not recovered.

If I have a regret it is that I feel ever more distant to the person I love most of all. I try to ensure her sleep, and exercise, and that she can do her work without worry. I spent my savings for a fall trip, as it is when I can best go out in the sun, and it be cool enough not to overheat. I spent it on her, and others, gifts for Cheryl and Rachel, and Christianne, and GirlwithCane, and the other names which should come to mind, but don’t. But most was for her, over a month in saving so she can have a fleece blanket for her bed. And a movie for us to watch together, called ‘The hole’, rated 12, it was from the UK, and a bit like the Goonies. She said she didn’t like it.

I hope I’ll try again. Except I’ve been waiting and trying for months and the most I know of her is that she says about the hour she kept me alive, which I am grateful is that ‘that was a wasted 90 minutes’.

The day I came home from the practice for the 10K, she left me on the floor, stepping on me, kicking me, angry. So burned with anger until she told someone at work and they couldn’t understand why she wouldn’t be happy. She shared how she felt with a person at work, and shared what she felt, and it changed how she saw things. With me, she just stepped on my hand. And then kicked me before she left. I know so much about her anger, and so little about her tenderness.

I wish with all my being, with all that I am that her feelings shared and so my knowledge was reversed, and that my heart did not beat with terror when she comes up, and looms over me, her forehead creased with her anger, until I can’t sleep anymore. Until I am always afraid.

I wait, and wait, for her to hold my hand during the film, during any film. I wait for her to hold me, to hug me from behind, to start with slow touches, safe touches, until my body is not scared of her. But she doesn’t come, and I only know her anger and irritation, and the pain she gives, perhaps not knowing, perhaps not caring, when she feels like that.

I get to eat once a day. From Sunday night until now it has twice been over 24 hours between meals. Sometimes I get a salad or sandwich.

There are all new workers, as 3 more, the last of the regulars, are gone. I got an emergency overnighter, so she could sleep full 8 hours to counter the night of helping me breathe. She doesn’t thank, she doesn’t tell me if she even slept well. The overnighter was something to be endured, no food, no coming when called. Like most workers now that the regulars are gone, I get the ones which are floating around, having been banned by every one else. And they wear me down. I don’t get enough sleep, I don’t get food,

I am lonely and desperate. When I get depressed, she gets angry at me, impatient, irritated that I have not figured out what I am supposed to do and done it. There is no flex which allows me to be ill or depressed, and she is gone again, counseling for her anger. She ‘lashes out’, she calls it.

I love her, I love her, I care about her, I want to comfort her, I want to support her so we have more ups than downs. I want to know her heart, and so I offer mine, daily.
I tell her how I feel. She tells me who she called. I tell her how things make me feel. She tells me what I should do, or have done by the time she returns. She is mean, and I don't know why. She says things or does things until I cry, and I cry almost every day.

This isn’t the caregiving story you thought was going on. This isn’t how I thought it would be either. She however is here, when Murray and Pat, my parents, and Peter and Susan, my brother and sister in law, are not. My parents do not call, do not write, do not email, nor does my brother and they have not for years, even when they lived in the same city - not once I got sick. Even in palliative state, the RN’s don’t come, care managers don't come, and they see getting me into palliative as a sort of dumping, yet nothing changes. No support for either of us I want us to just be able to talk, about what she thinks, about what she feels. But she doesn’t say that. And the dementia makes me feel more, and more, and she lashes out more and more.

I am proud of her: that she stayed when every other friend we knew left, including family. The Terry Fox two years ago was the last time I saw a glimpse of my parents. And going from a great job with benefits to limited unemployment, and then a temporary job with no benefits, she is still coping though when the pain medication doesn’t show for a week, that’s bad. But considering all that she manages, I’m proud of her by the day and hour, and as I see her test her own limits, or challenges herself to grow.

She gets angry at me, or worse, and more common now, simply stopping talking at all, and walking out, which she does so frequently during the small times we are together. Living with a stranger is hard. Hard when the only time I have seen her smile at me in the last three days is when she was showing me to a new evening worker, as she is big at being a ‘good person’ to outsiders. I want her to have time for herself. I want her to want to be with me. But that's her choice.

I can make the time, even arrange it so she has her time, but she hasn’t told me what she thinks or her heart, or what she feels about me, and life now and palliative and dying for several months. She asked me to tell her two things I wanted to talk about last week I think. The first was Palliative. But we never talked. And the champagne to celebrate the Terry Fox is still in the fridge. And the champagne for our anniversary is still on the rack.

It is hard to open up knowing that you could be hurt by that person, knowing you have a good chance of being hurt by that person. And I have hurt her in the past. And she hurts me every day. And I keep telling her my feelings and she keeps telling me the weather, and using my feelings to hurt me. And I haven’t said anything for years to anyone, because who would I tell? Elizabeth is the one with the public flaws, and Linda the saint – everyone acts like that is all it could ever be: Beth the fuckup, and Linda the angel. Not Linda so controlling that she tells me how I feel, tells me what I think, and goes two days without asking a single question about me, simply telling me how I am, who I am, what I feel, until I give up counting hours, encounters and days as her assumptions, so far off it hurts in the bones, tell me she doesn't want to know. And because she tells me that too, "I don't want to know." The Linda that stops me from speaking, withdraws care, food, medicine, pain medication, and ‘ssssssssssss’ over me if I try to speak.

It took me this far down to say her name. Linda. Linda my love. Linda my all in all. I know how empty my soul is. How is yours?

I tell her how I feel. I tell her that I am hurting. She tells me to shut up. I tell her I care about her, she walks out.

I want it only to be the time for us, to manage the duties and then throw the world away and spend time doing what pleases us, or just lying together on the couch. This is how the last weeks should be. I don’t know why things are so hard, why I got this disease, why I worked in the ONE country that doesn’t have a reciprocal agreement so I don’t get a disability pension, and can’t help her in carrying the burdens, to take them off her so that she smiles again. And so that I don’t fear her so.

It will take a commitment, and planning, and determination to be close and supportive as we once were. But then, all things that are worth doing together require that.

She is worth it, she is always worth it. If only she would take a chance too.

“Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.”
Anon.

Sunday, September 18, 2011

New Record in Terry Fox 5K

1:10:05: One hour, ten minutes and five seconds. It is my new record for jog/walking the five K. The Terry Fox was a 5K to increase numbers. So bigger this year but later in the day at 10:30, and the rain was gone, the sun was shining. Some people had hair shaved for Cancer charity fundraising including Olympic medal winner Silken Laumann (whose went on to get bronze instead of to the hospital after a injury that shredded her leg to the bone).

I ran for the first kilometer with a woman with a leg amputation but she was powering on and by 2 kilometers she left me in the dust. Due to the sun, I had a ‘cool bandana’ with crystals to cool my brain stem, and water poured over me to cool my body. My hands swelled, so much that I couldn’t hold a drink but took water when I could, with Linda and then Cheryl using the wheelchair as a portable station for holding drinks, bandana’s, oxygen, and even an ambi-bag for breathing.

While the event isn’t timed, it doesn’t stop some people from getting ‘serious’ from the 7 or 8 year old in this picture doing stretches, to the runners flying past, fingers on their neck pulse to see if they are reaching ‘optimum heart rate.’ But for most it was a family event or personal remembrance to raise funds or awareness of cancer. There were two wheelchairs besides mine. The guy with the hip amputation was back, having seen him in 2008, 2009 and this year, doing the 5K on crutches. With sun and no sweating, I quickly swelled up all over my body, and not only was I taller than they rest but a blimp to boot.
Some of the racers, or walkers thought the event was more of a fashion show, or fitness show but I was running my race for my reasons, just like a lot of people on this particular race. The scenery was nice, though I spent most time trying to stay upright. My left side didn’t respond much, either in arm or leg movement, and by the hill at 3.5 kilometers we were at the back. But just getting PAST the cemetery was a motivation. Cheerful place to put in the center of a cancer 5K, no?
I was wearing Columbia hiking shoes/boots as they had the support of my tendon and ankles to stop them rolling over. When I lost balance, I would suddenly go sidewise a few steps, or diagonally. Having the support to get my balance back and heading forward helped. Having Linda there to provide water to pour over my head and drink, as well as Cheryl to pace helped a lot. I am tall, I felt like I was the tallest person there. Kids stared, I waved, teens stared, people stared, oh well.

The people doing the 10K had passed us and finished, and so had mostly everyone else. People were heading home in their cars, but we were still going. One guy running by yelled at me, ‘You’re holding up the end of the race.’ Classy.
As we were alone, Linda and I, then Cheryl and I played the ‘what damage or diseases DON’T I have.’ Game. After an hour of pain and sun, with people gawking at the wheel chair and me, this was humor.

‘I don’t have Lupus!’

‘or HIV’ said Linda

‘Cancer, though after four years without even an x-ray, who knows’

‘hmmmm,’

‘Well, lets see, damage to heart, lungs," I staggered on like a wound up disability doll, continued, "oh and the circulatory system, blood, brain, nerves, spine,”

‘liver’ Linda added, as the blood tests showed that was damaged.

‘Kidney, connective tissue’, I added, from the blood test results

‘Immune compromised.’ Linda added also from the blood tests

‘Brain Damage, stroke, seizure disorders, cellular edema’

‘I don’t have Bird Flu!’ I finished.

The final stretch was uphill but Linda was up ahead at the finish line, waiting for us. She did the whole thing with a backpack full of medical supplies to support me. Thanks.

I did it, (and so did Cheryl and Linda) without stopping or resting, I went on and on, as fast as I could. I thought a lot about Terry Fox as people passed me, or stared. I'm going as fast as I can. Terry used to write and say that a lot too.

I sat in the chair and Linda got oranges and water. After three oranges, I wheeled out, starting the 5K I was to do in my wheelchair. 5K walking/5K wheeling, makes sense right? Apparently not so much to Linda.

I wheeled a bit (Linda later showed me, it was only 50 yards or so), and rested in the shade of a tree so the cool breeze from the ocean could cool my core. And that is all I remember.

I passed out, Linda saw me unconscious from where she was at the finish line, came over and wheeled me to the St. John’s ambulance. I wasn’t breathing and passing out. There was a guy doing training who learned how to do the ambi-bag. He was doing it for 10 minutes while I had stopped breathing. The supervisor saw the one in Linda’s bag while she was getting medication and Cheryl noticed and told him, “Well, you’re already using yours.” (I was told this after, by Linda and Cheryl) The EMT's seemed a little surprised that we had a mobile ambulance in backpacks and under the wheelchair.

They called the Ambulance Service (two of them).

I woke up as Linda was finishing explaining my disease to the St. John’s people and the EMT’s. “And she walked it??” The senior guy asked, “The WHOLE way?”

Linda said yes and they looked at me, and I gave them a thumbs up and said, “A-okay”, which would have been more convincing if I had not been out for about a half hour. The EMT’s allowed me to leave, though in taking the blood for the diabetes test, the blood pressure from that needle stick flowed down my fingers, and onto my other hand. I guess the pressure was a little HIGH.

Happy we were not going to spend 3 hours in the hospital, we went to Beacon Drive in instead and had Ice Cream. I had a hot fudge Sundae.This was MUCH better than the hospital. After that it was only home, an assisted shower after I post this and then off to bed!

Thanks for your support. I set a new record for palliative…er, system dying, autonomic function impaired individuals for the 5K. Woot! (Now, for the next few days, I just have the pay the cost, sleeping in my Hello Kitty Pirate Sleep shirt I love how she has the muli-piercing earring AND the heart shaped eye patch, although if you are doing the whole skull and bones of dead people, adding a pink bow tends to diminish the fear factor).

10:30 for liftoff!


I am not in the hospital, and I am not dead, ergo, I am taking off at 10:30 at Mile zero - having some pasta for energy boost! Thanks for the $140 raised so far for cancer research and treatment.

Onward!

Friday, September 16, 2011

The Terry Fox Run, Dementia and Anarchy

Thank you for all those who have helped with donations for the Terry Fox Run 5K/10K coming up (on Sunday at mile 0, by the Terry Fox statue), I hope that it moved the world and life for some families going through cancer better. If you want explanations, my web page is here.

I am not quite recovered from the ‘practice run’ yet. It knocked me down, and I lost another day to sleeping, and another to having my legs going into spasms, or just lock up. One worker, helped me after I needed more hard core breakthrough pills, but one leg was locked up like a flamingo, while the other was in half crouch. She lay me into bed but my legs were sticking up into the air, so she threw a sheet over them. “No, no, please straighten them out!” I begged her, and had to wait until she could massage my calf and hips so the knees were only sticking up and then finally flat.

I have been watching the Cancer desperation of Walt in Breaking Bad, recommended to me by a careworker, and addictive as I root for this guy who has spent so long getting bad breaks and now he needs to come up with a way to pay the mortgage, help his kids, provide for them after he dies in 18 months. He has this number $731,000 that he mutters a lot. He is a science teacher and besides making some amazing meth, he also does lot of cool chemical stuff. I completely understand his feeling of how an illness and situation like that catapults you beyond the rules of society. This is reinforced when social services and even the police say that ‘normally….’ But in MY case, they can’t, the disease is so complex it is all people can see, and I am swallowed by it.

In Season 2 (which I just watched and then put up for sale), Walt gets news on remission, and there is a party and everyone is celebrating, because things can be ‘normal’. Well, except as his wife has not shared his cancer experiences, they have become more alienated, and she blames him, and he is exhausted in trying to do what is ‘right’, to care about those he loves, but ends up doing ‘bad’ things, and it is breaking him: Breaking Bad. They call for a speech and he says, “When they told me about the cancer, the one thing that has been going through my mind, over and over was ‘Why me?’” Everyone nodded at this piece of wisdom, and he continues ignoring them, “But ever since I have heard about this remission, all I can think, all I can feel, is the same thing…..why…why me?” And then Walt takes a drink in the silence and someone goes, ‘um, let’s celebrate.’ And so all his feelings are ignored and ‘normal’ continues.

One fun thing in the extras was a viral site called, Walt’s Warning, which I recommend for full screen. You move the mouse and Walt will react. I have found five different endings, I recommend staring at him AND his gun during his rant, that is the new one I found. Though looking at his lab is fun too. It is here

It seems like the world and I are in the same view, as the meta-groupings, the ‘cultural phenomenon’ have moved toward Zombies, Lawlessness like ‘Justified’, or Breaking Bad, Sons of Anarchy, Walking Dead. We have replaced our look to ‘Heroes’, or a Superman who will come and save us, or aliens who will at least overtake us. We can only see a future which will break down in some way, with wars that seem to have no end, problems with no solution, corruption everywhere and so it seems that zombies and the 'post-' world are something we might expect soon. The theme of all of these, from Good Wife to Nikita, Hanna, and the other stories which we culturally make is that we hope for a society where the norms of the rich get richer end and other values of who is valuable like in Walking Dead start to apply. Why? Because if those ‘wise men’ who are in charge of it all got us here, then Anarchy is looking pretty good. And Anarchy is not destruction, but rather in Woodcock Anarchy, the removal of the center, the elimination of the power groupings to create a vacuum where new groupings (and we hope better ones) can arise. An example of the depression and the whole province of Alberta voting for Reform is an example. Of course, since Reform was about how politics was fixed and corrupted by group collectivity, even though they became the official opposition, due to principals of NOT using collective power, they refused to vote as a group. So each politician voted independently and due to conviction. However, in a parliament system what that meant is they got nothing done and were not re-elected. Let’s hope our Anarchy does better (with less zombies).

For me, I have been having increasing problems with dementia, particularly the fragile nature of emotion and dementia. While some of those with Dementia may seem volatile, in truth, those like me simply have NO DEFENCE at all which everyone else has. For you, if something bothers you, or you think about something irritating, it is merely background noise as you concentrate on doing your job and keeping a straight face. For me, there IS NO BACKGROUND. There is only the thought, which loops and loops and like following a wire straight into my emotions, there are no baffles at all to stop them. It used to be that a song was ‘more intense’ and TV was ‘gripping’, far more than I had ever experienced. But now the emotional memories brought up by songs can produce seizures. I experience music, movie, life more than those tripping at a Greatful Dead concert. It used to be good but now, without defences, emotions wash over me, trap me, imprison me, alter my view of the world, confuse me. And sound, with the pain increasing, with the side effect of increasing my sound pain: the other day, someone pouring cereal in a bowl two rooms over through a closed door was so painful I was screaming. My side effect to Fentanyl.

I think it can be summed up by Linda finding me crying at 4:00 am because, as I grow fatigued, what little control I have goes and I wanted to sleep so bad but I COULD NOT turn off the computer. The hallucinations grow worse. I go into the bathroom to pee and unless watched, I will stay there for 2 hours, simply because the HERE is overwhelming and I don’t have the mental and inner strength to know where to go next.

As Linda said another night this week, helping me shut off the computer, “It’s okay, the people on these shows they aren’t real.”

“They are.” I told her, “I see them, they talk.”

Linda knew that I couldn’t understand ‘actors’ in that state and asked me to trust her. I didn’t want to leave the people in a bad situation. I couldn’t. She had to lead me, through the confusion that surrounded me, to my bed. In the same way, when a series ends, it is harder and harder to understand that. Because I know so much about them, what they hope and they want, and they must still keep doing things, because we all do, they MUST. So where are they now?

I also have been having runs of seizures which breaks down barriers in the brain. That happens almost every day. The disease I have has changed my sleep rhythms, so I can’t be awake during the day, I wake at 3:00 pm and go to sleep at 4:00-6:00 a.m. There are a host of diseases which cause this. However, the caregiving system is not set up for this, nor are care facilities. I have to hope that hospices are.

There are two main dangers for Sunday’s run. The first is more damage to the heart, and not small tears but large ones, causing significant bleeding or a heart attack. The reading from my blood work show that I am experiencing damage internally, and that it is increasing, about 20-25% since the last blood test a few months ago. It also showed that my muscles and tissues are ripping easier. That doesn’t just apply to my leg or arm muscles but heart and lungs as well. So, I could rip something, or rip my heart, and either bleed internally while walking the 5K or have a massive stroke or heart attack. I cannot use a walker as I cannot control my legs, nor can I control myself while going downhill, much less any device I bring with. If I fall, it is unlikely I will be able to get up again.

The second, which has a high probability (likely higher than 50%), is that I will be too weak to breathe, or breathe in without exhaling while asleep rupturing my lungs, or breath into my stomach. I have done all of these in the last couple weeks. Even something trying to help, like eating, could cause a flow of blood and energy away from the lungs, and result in not breathing. However, if I don’t eat, I have no way to convert new energy to get me out of the valley. Linda will likely have to spend some time, perhaps an hour or more breathing for me, acting as a human ventilator, so that my diaphragm and body can get as close to complete rest while still circulating oxygen to the brain. This is something she does more and more frequently. No greater love than this, that a person give themselves, their time and life so that another might live, even if it is only for a short time. Linda does this for me. Thank you. So, first to accomplish the race, then to live the next two days until I am able to stabilize.

We all face obstacles in life. That is life. I want to walk 5K. I am afraid of the Terry Fox 5K. It is my first in over two years. I think it is also the last time I saw my parents, for a few seconds, by the side of the road, before they left me. But whether I succeed or not. I will not have failed. I dreamed of what might be possible and dared it. And as long as I keep doing that, and facing forward to my fears, be it the terror brought by extended dementia, or the emotional pain of reaching out to others, knowing rejection could occur, or pain and humiliation, how can I fail? It is 5K that might be foolish to others, or not matter to anyone, except to me. And isn’t that the definition of a dream?

Monday, September 12, 2011

What Salmon and 10K's have to do with me, or you.

I went to see the Salmon in the Cascades going up 15 feet of boiling, rolling water. They literally jump far beyond the length of the body, and far beyond I could think was possible. “Hell!” was what I said when I saw what the Salmon had to jump, because in Goldstream, the salmon come up the stream but they sure don’t simply leap over or INTO rock. (click the pic) That salmon is a couple feet long.
Once the Salmon starts the run, they don’t eat, which is the way I had already lived, losing the fat, and keeping the weight down in order to do what should be impossible. But then simply because it looks impossible, or what we have decided is impossible or possible in our head.

We simply can’t know what is possible or not until we try. Terry Fox taught me that. Next week is the Terry Fox 10K. Terry Fox designed it when in the hospital so that there is no winner, no loser, no first, no last. And while there is just now, starting, an autonomic rare disease group of seven doctors in the world working together, there are no fundraisers for it. Nor are there for better palliative care, because as the Doctor in the hospital for the dying tries to explain to a VERY important government man about his wife and how she needed to be PRIORITIZED as she had just shat herself. ‘Over there, on the other side of town’ he points, ‘a hospital just paid 50 MILLION for a microscope which detects a certain type of cancer cell faster. But here,” he stood up, “here, we don’t have the aid staff to help people take a shit. Does that tell you about priorities?”

If you are old enough to go to uni, then you probably know someone who has cancer, who has been treated for cancer, who has died from cancer. Because you always ‘have’ cancer after that, since cancer is the beautiful deceiver and all it takes is just one cell to survive. I recommend Wit, with Emma Thompson if you don’t know about the nature of cancer treatment. And while there are BETTER THINGS you can do than money, like for example being there for someone, week after week while they go through treatment, not just the ‘fun weeks’ but ALL weeks. Or volunteer for a palliative center (oh, did you think the people who aren’t cured from cancer mysteriously disappear? Nope, here they are, throwing up – oh as the doctors says, ‘some irritation of the intestinal tract from lips to anus’ – a moment for side splitting laughter of understatement if there is one). Because if there is one thing that is worse than going through treatment is going through it all alone.

Terry Fox ran and tried, and did his 3000 miles and died and Steve Fonyo did it, both to raise funds and awareness to cancer. 1 out of 3 of you will get it, your families will have it, your friends will die from it, it is a disease that should need no introduction. I will be at mile 0 on the 18th, and I will be walking or running for Cancer. A webpage is here (I am a luddite on links and stuff)

Yeah, walking. I might be wheeling too, if I can still move. Five kilometers is what I am aiming for and I have been training for it for two months. But seeing those Salmon last week, I knew exactly that I needed to do something.

I walk because I want every person who has cancer to have something I never had these last four years: HOPE.

I will finish, I will fall, I will not finish, I will be removed, I don't care, because it isn't about how hard it is (and hard it is, as my heart will be beating at 180-220 BPM the entire time, and chest pain normal and otherwise, leg pain, body pain, and two giant hills), but about trying, and raising awareness.

Because while I can’t feel much down there, or even go straight, or stop from falling, I went out and did 43 minutes and change on my feet. And if that doesn’t do it, then I will have to keep going. I didn’t stop, I didn’t sit, or rest. And at 39 minutes I had an ‘infarction’ which felt like a mix of lightning coming in my chest and splattering on my back along with pain which had me on a morning street screaming while I watched my hand and arm go purple. But I kept on, and then lay 2.5 hours, and then got to bed, and couldn’t sleep. And the pain goes on.

How is it possible? I don’t know. If you had asked me before Sunday I would have said it wasn’t. Since my earlier time was 8:05 minutes which I had worked up to. I just saw my death and kept walking toward it. I looked and picked a spot and said to myself, 'You have to get there before you die." And whether I ended up walking into a tree, or backwards, I made that marker and said, "And now it waits over there." And it hurts, every couple seconds I am up, and the edema makes me look like the Pilsbury Dough Girl, and after 15 minutes I have to keep putting my arms over head to get that blood back to my heart, and use one leg far more than the other, but I go. And that’s the point. So now, unless I am chained in hospital or dead, I will be at mile 0 in Victoria. My pain is the future’s gain. Because the other thing I thought when I saw the fish was that if I was a salmon I would think, “Geez, mom, couldn’t you pick someplace…easier to leave your eggs?”

There comes a time when it is about the future, in Salmon and in me. I’m not going to be here long, and life ain’t that fun now. So to go through hell of pain for 36 hours for some awareness or funds raised for cancer, then that seems a good exchange (most of the time, I go through hell of pain for nothing, so this is a win/win).

Thursday, September 08, 2011

Seizures and Bleeding in Brain, What Palliative can do?

Lost many hours, most of today due to massive seizures which cycled for hours and hours, destroying capacity. How permanent the damage will be seen over time.

A RN came in her last week to drop off a paper which stated that due to a review of my case by a doctor who has not seen me, or vice versa, I am now officially ‘palliative’ with an expectation of less than six months to live. Though that original request was made over two months ago. Smile, wave to the crowd, smile.

If you need a review for Vampire Dairies season 2 it is this: “These Vampires may be 200 years old, or 500, but they never grew up.” Expect angst and some new supernatural entity every 20 minutes of the show. Elana I think her name is should die (the one they ALL love, but no one bothers to think to give the family ring to so she can be killed and come back to life – yeah, tonnes of stuff like that, where people die, and die, and DIE, and die, but don’t really die, except when they die, until they don’t die – and they still end up going off into the corner and sulking, or better yet, stopping during a torture in order to assure a neurotic insecure girlfriend that she is the one – yes, real scene……twice) and like Sookie, perhaps one day she will. But don’t waste your money on this, just fall out of your wheelchair on the edge of a gravel pit and call it even.

And while life is very painful and has many aspects that suck, it does not, because we are small and the world is big. The day we came back on the ferry a young Humpback had been throwing his body out of the water in the Strait of Juan de Fuca with the full fins. The Coho was there. I wasn’t. But I was heading out of the doors muttering, “Whales, whales, whales, whales, whales!” when a Humpback surfaced 200 feet right in front of me and then the ship came to a full stop. I put on the strap, fearing I might spasm and throw my camera in the ocean in the excitement.
I know it was a humpback because it crested, blew and then has this very distinctive hump right before diving.
Here you can see it diving, lifting up the tail for a LONG dive, which took it far, far away from the ship. It was such a clear day that you could see Mt. Baker in the background. It was one of those small brushes with a creature so large and living in a space so immense that even being on the migration route, to see each other at all is remote.

Friday, September 02, 2011

Hi ho, erotic and seizures

Hi ho, ways to get visitors when you can’t leave home? How about have seizure cycles and have a care worker call 911 – ending up with FOUR people, plus care worker and I (six total) in the study. She said she found me face down on the desk twice not breathing, and then I had the most ‘severe’ seizure she has ever seen (and she’s seen lots of tonic/clonic, also known as ‘Grand Mal’). I think I managed to get the top of my head touching my spine, so who says that disability doesn’t make you flexible!

My big regret was not getting it on film, or being conscious. I had four more after the Emt’s came and have been sleeping a lot since then.

You know how some people with disabilities can tell the weather is changing due to aching, or being sore? It seems I can tell when it gets cooler because I am horny. Or getting a tingle where no tingle has been felt for some time! Haha, go go neruo pathway! And from all the sleep I celebrate my first erotic dream (three women, and who exactly stops to do black and white paintings during the act? Well, me apparently) in at least a year. So here is a video thanking Disney for firing up my loins.

‘I’m into boys….er…sometimes.’