Tuesday, December 28, 2010

Illness: the three ghosts versus the dream of that day

Xmas and Holiday time for me is about those ghosts (as I seem a social one, making 'oooooh' noises and chain clanking from my study), ghosts of past, present and future. They are not just the Dickens tale but the emotional fluxes as I/we move from the past, through the present to the future. And with those experience, while others go from the pre-independence of family obligations to the empowered future promises, I move backward. I live as the Angel of History, watching my past piling up at my feet, while unable to turn around, never knowing the future.

This is my ghost of the past: I had misunderstood ‘pace’ for ‘value’, and believed the fallacy that because I had more options, I made better use of them. So sure, I did everything because it was expected of me, because it was what ‘good girls’ do, because I didn’t know what else to do. And sometimes I did it because it was exactly what everyone didn't want me to do.

This is an error we make individually and as a culture: that slower, or that ill or disabled means having less worth, less meaning.

What do you want to do when you grow up?

I was always asked that. So why is that when I meet family, I don’t feel grown up at all, as I fall into old habits and everyone works so hard to make me 15 again.

When I meet my brother, he tries make me feel the younger sibling: to parents I will always be the child that needs to be ‘taught right’ or feel guilt because I must have done something.
I used to come back from family visits with frustration, relief and depression: frustration that they didn’t seem to want to know me as much as try to make me 15 again. Relief from being at MY home with my space and my place, but also depression because I hadn’t lived up to the expectations I thought they had for me, or I had on myself.

I will always long for my brother to be proud of me, his wife proud of me, and my nephew, and most of all my parents. The aunts and uncles, and cousins I wanted to show that I could come back to this town where my being a fourth generation means rare part of city history, and show them that education wasn’t ‘stupid’ or ‘a waste of time and money’ or ‘airy fairy’ but something which not only gave me joy but gave them someone to brag on.

Love withdrawn hurts.

Yes, that is a stupid reason to come back or act at all, but I feel it all the same. Whether I have this or Lupus, or CFS/ME, Fibro, depression, whatever disability or none at all I would still feel that I have to adjust to SECOND best. Or perhaps lower than that. Every person walking with purpose past me makes me feel ashamed, not just for me, but for the expectations I carry: that I’m supposed to show what all that time taking degrees was worth.

Yet have I ever had a job I didn’t try to change, to take on the next two levels of bosses? Or doubled my hours?

This is my ghost of the present. That feeling that I never tried hard enough, goofed off too much, or worked hard enough. And that life has passed me by.

The joke is that this, right now, is life. And it is each of those who turn away, not I, who are passing life by.

New Year is where we see the ghost of what we can be, when we ask ourselves “Is this what I want to do, and who I want to be?” And we challenge ourselves by making a list, perhaps looking too much like the list of last year, to vow the change that will occur: we will be changed men and women.

Terminal illness, late stage reverses all that, and I need the security of a family not there, to be held, supported, and being able to be HERE, without worry, not pressured about the next "What are you going to grow up to be?", medical or otherwise.

This is my resolution, to stop looking, and learn to trust me and those who accept me, as that is what matters. I won’t be able to meet all expectations, and I will be doing less, and often just surviving. Some days I can’t even do that myself, because I am fragile. I wish I wasn't but I am very fragile and need one or at times two people to assist me, to do the very basic things to keep me going like food, water, air, movement, so that I get a few hours on a day like today to 'do', like writing this down.

I did the math and the 30 postcards I did this weekend, if I had my normal life, would be three months volunteering. Yeah, it is just a postcard, or a note, or a present, but for me, it is 1/50th or 1/40th of my waking life. And soon I won’t be able to do that, and then I won’t be able to write.

What ever time is left, and it isn’t that much I can’t be a late 30 year old, or Dr. McClung doing research, or an impish teen or hot goth crip, but all of it and none of it. I don’t have time to be other than what I am that day (which sucks as all the good manga I want to read is coming out in may, and Sakura-con is late April. There is one manga coming in May Ai Ore! (Love Me!) where the ‘princess’ from an all boy’s school and a handsome and butch ‘prince’ from an all girl’s school find themselves interested in each other through music, while they bend which gender is supposed to do what, and have to fight the expectations of their schoolmates, particularly the same sex ones in love with them).

The Butterfly is apt as a symbol I think for those living with many chronic, life threatening or terminal illnesses. They are butterflies with invisible wings. For the caterpillar’s life is changed and lost, a time of pain, sorrow and loss, before learning how to become something new, not flight like a bird, or focus on the ground like the caterpillar of before but something between. It is through the struggle, and pain, adjustment that such fragile wings emerge. We cannot be what we were, or try to maintain that path. I cannot be what I was, or planned to be, or wanted. I have to learn new dreams. And I respect those who take the time to accommodate me, and see the wings and achievements made, not in comparison of last year, or six months ago, or last month, but in joy of a life being lived. These are the real friends, but the few friends.

It is hard, as people forget we trained, we were like them once, that we had big dreams, big ‘accomplishments’. So they trundle on out of view while we still are scatching at our large dreams (day to day), realistic or unrealistic dreams which know the limitation of our illness and accept it or blast through it. The secret of being FIERCE is being brave enough to know the likely outcome and act anyway, because this is what that day is about.

I know that there is supposed to be balance, and spoons of energy, and good and common sense. And that probably works for 95%+ of individuals.

I know my parents stopped coming to field day because I entered into the 100 meters, 200, 400, 400 relay, 800 relay, 1600 relay, mile, hurdles, and high jump and the comments were, “She’s not going to make it.” or “Why doesn’t someone stop her, can’t you see she’s in pain.” It was LA, summer, and yeah, I had my head back, hanging loose as I sucked smog that hurt to breathe, but I was still running and I was in third place.

Later, after being able to walk again, and once I had gotten the knee operations I was told I had to be careful, very, very careful. My knees were carved up, and no more chancesL: so I trained in running marathons. When preparing for a qualification competition I ran over 100 miles each week and at least 10K every 8 hours. I read the best marathoner had run 100 miles a week, so I tried to keep at 200 miles a week. This was all perhaps stupid but it was all very me.

In Manitoba I used to run around and around a track, and Linda counted the times around, 54…55….56, I tried to stay ahead of the bugs. This and working driving a fork-lift and doing custom paint mixing if you can believe it. I think it was Linda counting the laps that made me understand that I had someone who understood that my dream was just that, a dream, not something logical. Yet she waited for me, bugs and all. To find a friend who understands this is to find a real friend; a co-companion through life.

I don’t know what secret dream you have in your heart. I still want to go to the Olympics, and of course, lead a rebellion in the streets. But if over a couple days, I write this, then I finished another race, and I’m sorry, I’m off to the next one. I would love my friends to see and be with me. My dreams are just dreams, and with help, they might happen, they might not, but I WILL try: brick wall in the way or not.

I’ve got a limited amount of time and my ghosts of past, present and future say this: 'stop listening to us'. I will live the time I have as I can, sometimes resting, and sometimes going 'Banzi!!!" (CHARGE!), and if you want to, you can help me, join me or get the hell out of the way.

8 comments:

paganwooki said...

I want to join you,, you have taught me much..

Linda McClung said...

What an eloquent way you have of describing your life both with the ghosts of past, present and future and of the caterpillar/butterfly analogy. Especially the butterfly one. It’s beautiful. I can’t imagine how a caterpillar would feel, if it knew what it was doing, what it would lose and how it could never go back to what it was. And would the future be worth it?

If I were ill with a degenerative illness, I would find it very difficult to cope with knowing that instead of moving forward in independence that I was moving backward. You struggle to cope with it is one of the things I admire about you - you’re struggle to accept the limitations the disease is putting on you. And what is humbling to me is that your wisdom is increasing as the present and future merge.

That knowledge includes recognizing the difference between pace and value, helping us AB people learn that slower/ill doesn’t mean having less worth or meaning, and the secret of being fierce is being brave enough t know the likely outcome and act anyway.

One of the phrases you used that really had an impact on me in this blog is ‘every person walking with purpose past me makes me feel ashamed.’ It’s hard for me as a caregiver who is so often ‘doing’ things for you to realize that what I’m doing is a double edged sword. Sure, it makes life easier for you if I get the groceries and prepare the food but at the same time it emphasizes that you aren’t able to buy those groceries or cook your favourite meals like you used to.

And for the record, in you’re jobs you were always trying to make things better – for the organization, its employees and the customers. And if you had to take on multiple levels of bosses to do it, by golly you would. Since I have been with you the last 17+ years, I don’t know a time when you never tried hard enough, goofed off too much, or worked too little.

I had forgotten about counting laps for you in Manitoba – hadn’t forgotten the bugs though. You have always been a dreamer, it’s one of the things that attracted me to you. But along with being a dreamer, you had the courage to follow your dreams which in turn gave me courage to follow mine. I think that’s a pretty impressive legacy. But you’re NDY and have more dreams to reach for and I’ll join you in trying to make them happen.

BTW... a beautiful selection of photos today. I'm glad you were able to collect them and photograph them for us to enjoy.

wendryn said...

This is a beautiful and thought-provoking post. Thank you for writing it.

SharonMV said...

Dear Beth,
thank you for writing so clearly and beautifully about the ghosts. They are always with me. I try not to listen. And what you wrote about education, I felt this deeply.It was a joy and was supposed to be a major accomplishment for me. I became too ill to continue only 1 year short of my doctor.

The butterfly is an important image for people with Lupus, because the rash we get across the face is shaped like a butterfly. It's good to know that it is important to those with other illnesses. It is an image of great beauty and great fragility. Also of great power - butterflies can fly. Butterfly wings have informed my heart over the better part of this year. I give all the animals & women butterfly wings. I hadn't really considered that it was connected to my illness.

Sharon

Vanessa said...

I understand what you mean about your family. Now is when you need them and I too feel that hole when mine doesn't come through for me either. When I'm in a childlike state I instintively crave my mother's arms and can't understand why she won't come. This is hard on the heart and mind and is not fair to us in any way.

I think many of us who follow your blog constantly wish we could be closer to you so that we may share in your here and now and offer more support than just comments or emails and the like. I know I would. {{{HUGS}}}

I'll be back tomorrow to write you more. Hopefully my headcold will have abated some more. XP

cheryl g said...

Wow, your analogy using the butterfly is incredible and so very true. With disability/illness we are no longer caterpillars solely of the ground or birds with mastery of the skies. We are something in between. Like butterflies there is fragileness to our lives.

You work towards fully LIVING but doing it within the constraints of your illness and changing abilities. Watching you, knowing you I learn so much from your examples. I marvel at your bravery and admire your will and your wisdom. Fir a long time I had given up on dreams and just existed. You helped me open myself back up to dreaming and working to make dreams reality.

You may not be teaching in a formal setting but you are one of the best teachers I have ever had. You touched my world and it has changed so much. You are my sensei.

I love the perspective in the picture of the girl on the bike. The pictures you use to illustrate your posts are always evocative and very beautiful.

Raccoon said...

I've been asked same question many times growing up. The question I would ask back was "when are you grown up?"

My answer today to "what do you want to be..." is "old."

My answer yesterday: "warm." (Yesterday I was cold.)

My answer tomorrow? Ask me tomorrow...

Neil said...

You are NOT a disappointment, and you ARE a wonderful person. You may have to trust me on that, but it's true.

Ghosts... dreams... I've had some ugly dreams lately, and I don't know why. But I hate them. They are the night-time voices, and I wish I could stop hearing them.

And Linda's right: you're still a teacher, still teaching us through this blog.

Love and zen hugs, sweetie. And Happy New Year to all who wish such things, and will accept such wishes.
Neil