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?

12 comments:

Neil said...

You have taught us much, Beth. You have taught us that we can do more than we think. You have taught us that we WILL be disabled at some point in our lives. You have taught us about your disease, your life, your marriage, your love, your fears. You have taught us more than those things. I don't think you'll stop teaching until you're dead, and possibly not then.

You are amazing. So is Linda. So is Cheryl. Thank you all.

Love and zen hugs,
Neil

M. L. Archer said...

Beth, I think you and Linda are courageous people whom I admire and respect. I pray that God, in the name of Jesus Christ, can bring you both peace.

I thank God that you both fight the good fight.

Much love,

Michele

imascatterbrain said...

loving from afar,
as They measure we things, our spaces?
God bless, long live!
-- Lorraine

wendryn said...

You moved the world. You have made a difference to a lot of people. You are still making a difference.

I'm glad you did finally get your legs to relax. That sounds very uncomfortable.

The fact that you are doing, facing everything that is terrifying, means you have not failed.

I will be thinking about you on Sunday. *hugs*

SharonMV said...

Dear Beth,
I'll be rooting for you. Hope your body & your breath hold out. I know your courage & spirit will. Please stop, if you need to -that is not failure. Love, love, love you.
Thanks to Linda for all she does.

Sharon

Alma said...

Beth, I'm no longer a member of GCN (so can't reply there), so I did a search for your blog, because I want to tell you that to me you are a hero !
Your strength, determination, standing up for what you believe, always pushing boundaries have been such an immense inspiration to me.
I have learnt so much from you, I have learnt that when we really want something, we can do it if we believe in ourselves, if we push ourselves.
You are showing through doing this walk that even now when most people would long have given up, you are still pushing yourself to do something that will benefit others, putting others first before yourself. If that isn't the best display of Christian Love, I don't know what is.

I want to say THANK YOU for being you, for all you have taught many of us, for being such an inspiration, for being so real about every aspect of your life. And I want to tell you that you are greatly loved.

I keep praying for you and for Linda.

Much love and massive hugs,

Alma (formely from GCN)

Lene Andersen said...

The message you send out with every post and every day in how you live is to challenge yourself and test your limits. To not take no for an answer or to believe disability means you don't have something to contribute that can change the world for the better. Thank you for that.

I'll be thinking of you as you walk.

Lorna, Bob and Liam said...

Love, hope, determination, assertiveness, critical thinking, love of learning,compassion, courage, humour.

These are just a few of the characteristics you model for us all every day.

Our hearts will be with you tomorrow.

Lorna, Bob and Liam

Linda McClung said...

Linda here...
Beth, I've got champagne in the fridge - as no matter what happens tomorrow on the Terry Fox Run, your life is worth celebrating. You will have achieved something great, whether walking the full 5km or less. The question is, do we celebrate tomorrow, or a couple days later to celebrate recovering from your accomplishment.

I'll be walking beside you all the way. I am proud of you for thinking of others, trying to raise their hopes, when you've got so much on your plate.

Thanks for talking about your dimentia and how your emotions have changed. I remember when you first mentioned watching tv or listening to music was more intense, and it was a positive thing. But those emotions have increased where it isn't so positive any more.

You talking about it made me think about people with late stage Alzheimer's. Sometimes they think the pictures on the wall and the people on tv are talking to them or are watching them. They have conversations with them, or with this person they always see in the mirror. I wonder how they progress to that stage - what causes it. And I worry that you have started down that path.

Anarchy - I have always been amazed at how you can look at things that appear random to most people and see a theme/phenomena. Then ponder about why the phenomena occurs - what in society has changed so that people embrace it. Anarchy, zombies or Harry Potter before that - what makes it happen. You're still great at making those connections.

cheryl g said...

I am glad your careworker was able to massage your legs and get the muscles to relax.

I like Breaking Bad a lot. I think I understand the reason Walt feels like “Why Me” when he goes into remission. It’s hard to let yourself hope when the hope can be pulled away in an nstant. Walt’s wife seems so focused on how the cancer affects her that she doesn’t seem to understand how Walter might be feeling.

Walt’s warning is pretty fun. Thanks for the link.

Thank you for explaining about the dementia. It helps to understand that things are not merely distractions to you but encompass your whole focus. I can see how that would be a double edged sword making TV and books more gripping yet harder to let go of the thoughts and feelings the invoke. Strong positive emotion can be just as debilitating as strong negative emotion. Is that why you “run away” to places like the cemetery, to escape the overwhelming emotion and sensory input in a place of quiet and solitude?

Linda and I are preparing for tomorrow’s Terry Fox run. We will walk with you and keep close watch on your condition. We will be ready to help you breathe until you have strength to do it without our help. I suspect it will take several days for you to stabilize.

No you won’t fail. You will have lived your dream with strength and determination.

SharonMV said...

Dear Beth,
I hope your are sleeping now. I know you're up late some nights & I always think of you in the wee hours. My heart is full of emotions thinking of you doing the Terry Fox 5K. I'm amazed yet fearful, worried about you, but proud of your determination.
But mostly my heart is full of love for you, my friend and gratitude for all you have given me.

Sharon

GirlWithTheCane said...

I wish that I could be there today.

You're both in my thoughts.

Sarah