Friday, November 27, 2009

fight to be equal, try your limits, find your grin.

I had a new night worker this week who told Linda in the morn, “She’s amazing, but she pushes herself TOO hard.”

I push myself too hard. I have never asked anyone to push themselves as I do, only that they try their own limits.

This week I went up and did three games of badminton, not two. One was very intense, I served an 8 point come-back on game point only to miss the final shot. I was high on endorphins, I was talking to people, they knew my name, they joked with me. I was part of society, if only for 60 minutes. Then I came home. That extra game and the fatigue from the medical tests have had me in a fever off and on ever since. Before that the power was shut off for a day and I had to be moved because there wasn’t enough oxygen battery power. The fever spiked and then broke this evening at midnight.

I act, not like an able bodied person, but like a stable wheelchair user for an hour and I pay for days, and I expect I will pay more. I am on oxygen, I am pain most of the time, I try to use it to keep my mind sharp, since I can’t seem to have adequate pain control. Maybe during the US thanksgiving, was the thankfulness for health, if said specifically, for not being like me? Except I am thankful for my health.

Do I wish I had better health? That I did not cost Linda in both financial costs and in care giving costs? Yes. I am now in a state where I need close to constant care. Yet I still have that hour a week. And the stubble of new hair on my head has been felt. When a person has little, then the little things matter.

The neuropathy has affected my entire body and is now destroying all nerves (there are many kind of nerves from big ones to small ones). A partial para and I were comparing notes and we could both sometimes feel something big, like a toe breaking or something being crushed, just for a second, a scream of pain static making its way through, and then nothing. This week I got a locked cramp in my calf, waking me with the thoughts “AHHH!” followed by, “Great, I am alone, how am I going to get to that part of my body?” By the time I worked my way down my leg was at an angle due to the cramp which I couldn’t feel at all. I tried massaging my calf with hands, which couldn’t feel the amount of pressure I was using, or the muscles themselves. Then realized how ludicrous that was, took a muscle relaxant and lay back, leaving the leg still bent, and hoped for the best. That isn’t the absence of life, that IS life.

I am in the closet sexually. I don’t know how it happened, but it did. Maybe too many little comments from night and other workers, or the realization that if this person felt uncomfortable around me, I wouldn’t eat, or pee in a bathroom. A worker recently found out, I told her we were together “Sixteen years, and about five or six legal.”

The worker went on and on, “Wow, it has been legal for that long? I didn’t realize so much time had passed.” No lady, having a partner and being sexually active with her has been legal for a LOT longer, it is just five or six years since this province made it legal to have the same marriage benefits. Except we don’t.

The health care system is full of people who are within 10 years of retirement, and for whom it will never, in the treatment they give, be legal, and so after many tries they ask, “Where is ‘your friend’?” not, “partner, wife, spouse.” Linda jokes that one day SHE instead of everyone else will be able to ride in the Ambulance with me. Last one was empty except for a woman filling in paperwork, and yet Linda had been told they were ‘too full’ One day she will be able to be with me in the ER without sneaking in the back, or the ambulance entrance. One day the care agency will tell workers who ask not to come back due to our orientation that it is too bad they don’t want a job at that care agency and to clean out their locker. Because what they said breaks the provincial and Federal law, but no one enforces it. As do the doctors who talk to us, or me, or just her, they are all employees of the government.

One day after I sat there while Linda and a care manager talked and I said what my concerns were and Linda overrode me, and she and the care manager talked as if I wasn’t there. I sat and when the manager was gone I talked to Linda. I said, “My ability to control when or how I breath, or my heart beats may go away, my ability to eat, or excrete may no longer be my choice, my movements, my memories degenerate, my mind may degenerate but….BUT,” I was crying in anger, frustration and most of all pain of emotion hurt, “I will LIVE and die as an EQUAL human being.” She had treated me like an object, a pet to be negotiated about. She doesn’t anymore.

I am an equal human to each and every person reading this and you are an equal to me.

We may have different abilities, we may have difference circumstances but we are equal.

At badminton the player who doesn’t want to play with women and particularly not me, who cheats and tries to taunt and makes anti-disability comment, made comments about the badminton DIRECTOR and his badminton partner, “Well, you know, maybe he is one of THOSE KIND of people.” Yeah, gay, I got it. But he followed up, “Cause, you know it is legal and all.” Wink, wink. Why is it the people who use ‘legal’ as an insult don’t realize what rolls of their tongue is illegal. And illegal because they are NOT treating people as EQUAL human beings. I looked to Linda to see if she could hear this, and said that no, I think the two of them paired up because they had good game rhythm. “Yes, well you know I hear THOSE KIND of people naturally have good rhythm.” He said with a snigger before wandering off. I was speechless because though Linda and I come together, he obviously has no clue that we are married. I thought of wheeling to the center of the floor and making out with her right there.

In the end, I say nothing that night. But I am introducing Linda to him next week. If that is okay with Linda. Because she is out at work, and I am closeted at home.

I am getting a full DNA and Chromosomal work-up. I am sure they will find Chromosome 5 anomalies. But as for diseases, the only disease on offer is a degenerative disease often confused with late stage ALS, but it takes longer to die. There is no treatment. It is a bad match. The disease I match has a treatment and I will be working and working to get it. Because I want more than my hour a week exercising hard. And I want more than a few hours here and there of blogging, or when putting things on ebay it wipes me out for a week.

I have gone to medical meetings totally silent, I have gone to meetings with folders of medical journals, I have talked less, I have been mild. But I don’t lie. When a doctor, a manager, a director, a deputy minister of government tells me that no, we can’t be equals, I know that I should not be a voice alone. That the voices of every group who was declassified as non-equal, all of us ‘sub-humans’ should rise. But these are the fights we fight alone.

The truth, for a doctor is that, they are correct in a way, we are equal in status, since as paid public servants their job is to help assist ME, because the money has been paid, not for their benefit, but for mine (I am their employer). But when seeking specialist opinion on medicine, it is good to focus on that.

Besides, I am not just a doctor’s but most people’s greatest nightmare. The things which happen to me, and to my body are VIOLENT. They are ruinous, they destroy and the people who spent 10 years or more just to start helping can do NOTHING. Dr. G., the best, was honest, “We can help your symptoms, but you are going to be the best expert on your disease.”

I am not my disease, but when one is falling through the sky with a couple anvils tied to your ankles and one where your parachute should be, it is REALLY hard to know the difference. Except for that hour. And the pain and decisions it takes to get to that hour. Or these hours, in the middle of night, and early morn, that I write instead of sleep. I fear the sleep. I am always sleeping, always nauseous, in shock and skaking, in more different types of pain and fatigue I didn’t know it was possible to lose count.

“And rushing to oblivion
He broke into that knowing grin”

Those lines make me wonder if they know what it is like to live at the edge, the story of a pilot, his parachute not opening. I know what that feeling is like; knowing this ride is the edge, for as long as it will last. And so I grin, not because it doesn’t hurt, but because it does. I told my parents, “You know, for the amount of time I spent in studying, I have had a child, grow into an adult.” A pause, “I guess I chose wrong.”

And then, instead of sob, a grin.

I push myself hard because this is what it is, and while I want it to last for a long, long time, if Linda hadn’t climbed on me for CPR, that would have been it. But it wasn’t. So I grin, and push some more.
Maybe you could sit and listen to your life go by, to the lives of others you care about go by timed in puffs of oxygen, and temp, oxygen and liquid checks. I can’t. I don’t.

Things I am thankful for:

1. That I learned before it was too late that we ARE truly equal regardless of race, of creed, of religion, of orientation, of gender, of disability – that we are all human, and thus individuals holders of the greatest of all gifts: potential.
2. That one day there won’t be a need for me anymore. That people will look around them and care about people they know nothing about...yet.

3. That Linda and I have grown as individual and as a couple, and that Cheryl and many, many others have grown as my friends.

4. That I can still grin.

5. That love is a choice and an action: and I still choose and act. That those around me, and those who I have never seen choose and act as well.
6. That as long as I live, I learn, and that there will always be new people to meet, new limits to try, new things to learn.


Kathz said...

you are amazing
you are equal
you are loving
you are human

(you are also loved)

Baba Yaga said...

you are beautiful.

Stephanie said...

Elizabeth, I am fumbling to find the right words. It's like you pick them all out for us. How many things are you going to have to fight in your life? Why do all these things have to exist? Disease, disability, and people treating you badly because you are married to a woman. Isn't love love? Why are we so hardened to it?

I want to act in favor of love. I'm going to print out your list of things you are thankful for and put it up on my wall so that I remember. Then I'm going to write it down. I need to remember. Thank you.

SharonMV said...

Thank you Beth for writing this. It's hard to have to convince people that you are an equal when just being, existing in that moment is taking all your strength. I'm fighting for that hour when I'll be able to go out with Dennis, to a bookstore, for a meal, for a drive in the country (and of course to the craft, paper, stamp stores which take precedence!) My special hours now are when I can work on my art, make stickers for the postcard project, plan projects & just have my mind full of creative thoughts. It's just so awful to go for days, sometimes weeks without these hours. Even when I am able to go out (now it's only for medical appointments), I pay the price in pain, exhaustion,fevers, flare ups. Not as high as the price you pay, Beth. Then comes the second, bonus price - the infections that I get nearly every time I go out among other people. But I will get stronger, and more able to endure the infections (maybe even fight some of them off!). Then nothing will stop me from going out & having that special hour that's worth the payment we make.

Sometimes we have to remind even our beloved spouses that we are equal, that we are still who we were despite all the losses & changes.

I miss my daughter, my child - the one I never had. She'd probably be graduating high school next spring.
sometimes I wish I had not gone to graduate school & had had a child when I was younger. We would have had a few good years before I got sick. Is it strange to grieve for someone who never existed?


wendryn said...

I'm really, really glad to hear you did badminton, especially three games! Sorry to hear it required so much in recovery time, but I'm really glad you manged it.

Going back into the closet sounds really difficult.

You are equal. You are a person. You are strong and wonderful and you do push too hard, but that is part of you, too. The fact that you act out love has made a difference in may lives, even those you don't know about.

Keep on, my dear - we'll be here. I hope that the tests bring some answers, or at least some treatment.


Lene Andersen said...

Comment short - shoulder crapped out, can't type, have laryngitis, can't use Dragon.

Grinning with you.

Raccoon said...

No matter what you do in life, your education, your love life, no matter what, there are two constants.

You are born. You will die.

In those two constants, we are all equal.

Everything else is just detail and fine print.

Or, as I've heard before, we all bleed red.

I'm sorry for the bigots. They don't know what they're missing.

yanub said...

I think I understand what you mean about being thankful for your health. I am also thankful for that, for your health, I mean. That your hair still grows, that your heart still pumps, that your breath is warm. That you have breath. And I thank you for your 6 things you are thankful for, even if I don't for a moment believe there will ever be a day when Elizabeth McClung is no longer needed.

You are right that it makes no difference how you present yourself to doctors or anyone else. If the essential problem is bigotry, you could be as meek as a new born kitten and still be tied up in a bag of rocks and thrown into a lake because you aren't valued. I thought it was well known that gays and lesbians get substandard health care, in general. Poor people get worse care. Black people get worse care. Women get worse care than men. Fatter people get worse care, as do people with pre-existing disabilities. And not just worse health care, but worse treatment in all areas of life where respect comes into play. Oh, that would be all areas of life, yes. You should not have to pretend to be a straight, non-educated unthreatening lady thing any more than a black man should have to bleach his skin and straighten his hair in order to get anywhere in the world. It's just wrong, wrong, wrong, of people to demand that others hide away what is essential about them as the price of being treated with the most basic of courtesy. And, at the root of it, you can never pretend enough to balance out the hate. Those who will hate you will never let Linda in the ambulance, never let Homer Plessy on the train, never let the Cherokees keep their land and sovereignty. See, you can go back through history and see the same thing over and over again. You can't ever really pass. But you can give one hell of a fight.

And because you are a hell of a fighter, I thank you. You fight for us all.

Aviva said...

You're an inspiration, and I'm thankful that you're you and you're alive and that you share yourself with total strangers like me via your blog and the Postcard Project.

I'm crossing my fingers that your test results come back with the disease you match that's treatable and you're able to get the treatment and it's successful. (Well, ok, my fingers hurt too much to cross literally but I'm really, really, really hoping.)

Kate J said...

Well we may all be equal but (thank heavens) we're not all the same. I mean, I would never EVER be able to play badminton as well as you... or write such a consistently interesting blog, or write an amazing novel like Zed. I bet you always pushed yourself to the limit and beyond. It's in your nature.

But I am saddened by the fact you end up having to conceal your sexuality - something else that is in your nature - or at least not be upfront about it, when dealing with care-workers. That is a fundamental inequality, which I - as a "straight" (-ish) person will never have to face. My male partner/husband is accepted as such without question. It's ridiculous that people won't accept Linda as your partner, whether or not you are legally married. If she were a bloke, they wouldn't even think about it.

The neuropathy sounds absolutely awful... you have my total sympathy, there's nothing more I can say on that, other than...
Love & peace

cheryl g said...

The title of this post alone sums up some of the best advice I have heard in a long time.

Fight to be equal: I had believed that I was pretty good at this one and then I met you. You are truly a voice, a warrior for equality for all. I now realize that there have been times where I allowed myself or others to be made less equal by being silent when I should have spoken or by being passive when I should have taken action. That is something I am now striving to change in myself and given some comments from work colleagues – I am succeeding. Thank you for helping me recognize the need to change myself and for giving me such a strong example of doing what is right.

Try your limits: It feels safe to never push the boundaries but you end up missing out on a lot. Since knowing you I find the internal conversation no longer ends with “I can’t do that” but now often begins with “I can do that. Just need to figure out how.” That outlook has opened up so many new experiences to me and allowed me to reclaim things I had believed were lost to me. I don’t bicycle race anymore but I can do 5K’s.

Find your grin: Knowing you has brought me many grins. We talk and laugh and have moments of joy. I savor the happy moments at all times and in all things now. It is so easy to get caught up in the rat race of life and find yourself missing the little pleasures and happy moments. I am much better at seeing and enjoying those. I find my grin comes much more easily. I see beauty much more readily.

Thank you Sensei for teaching me about and reminding me of the important things. Thanks for showing me that one can be afraid and still act. Thank you for being my friend and my sister. Thank you for your love and support. Thank you for coming back when I breathe for you even though the pain and suffering you come back to is so great. Thank you for being strong, determined, driven, uncompromising you.

I am thankful I met you and Linda. I am thankful you are part of my life and family.

Oh, and I want to go to badminton and have a nice chat with Mr. Wonderful the uber jerk.

Aviatrix said...

I can appreciate not being overt about your orientation with care workers as a survival mechanism. If they are allowed to reject any client who makes them uncomfortable and your life and comfort depends on them, then you're not betraying anything or anyone by being as sexless and vanilla (mmm, yummy) as possible.

But the ambulance not letting your spouse ride with you? That should be beyond negotiation. "I'm her wife," and jump in the ambulance. "We've been together for sixteen years and married for six." The point of us as a nation finally saying 'yes, any adult who is not already married may marry another' is that all such couples have the same rights.

I also understand that you have to fight so hard to stay alive that you can't fight every discrimination battle.

rachelcreative said...

Great post Elizabeth. Very well expressed.

There's an anwful lot of things here that could make you angry or bitter, yet you still end with a list of things you are thankful for. And you told me once you weren't too good at hope. I think you do pretty damn well with hope - you just find a different (warrior like) way to share it with the world.

Fingers crossed here for the chromosone testing (and treatment, for gods sake please some treatment). Also (in reference to previous blog post) that relisting ebay lots is easy and they sell and people pay up too.

Neil said...

So what is is that THOSE people with naturally good rhythm are? Oh, right, they're good badminton partners.

You're equal to me? I don't think so - or more accurately, I'm not equal to you, Beth. I know you mean equality in the eyes of the law, and it's immensely unjust that the laws the say you and Linda are (barely) equal to my Beloved and me. However, in terms of education, life experience, work experience, and actions to try to change the world and make it more just, you are so far above me that I can barely see the dust behind your wheels.

Though it's Sunday, and thus Grey Cup day instead of American Thanksgiving, I'm thankful for
1. My beloved wife and our children;
2. EFM, Linda, and Cheryl;
3. The friends I have made in the Society for Creative Anachronism;
4. Cats.

That's all I can think of today - I was at an SCA event yesterday and this morning, without my Beloved, and somehow, so many people already knew she has cancer, and offered support, hugs, and encouragement for her (she wasn't with me, dammit), that I'm totally overwhelmed, and completely drained.

But I can still honestly say that I love you, Internet niece, and I'm happy that you're still finding ways to cause trouble. Good trouble, of course. :)

Love and zen hugs,

FridaWrites said...

I too am thankful for my health but scared it may get worse--just of not being able to do as much as I do now, which is so much less than several years ago. The pain doesn't get better--often it's at a lower level but so consistent, always there.

I am mad about prejudiced comments like the guy at badminton made and like I've heard others make. Once I've spoken up to that person several times, I don't even know what to say at that point.