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.
3 hours ago