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?
18 hours ago