In part, this blog is about what it is to be a person with a medical condition, a serious medical condition. So what about the times when it isn’t fun, it isn’t stable, it is beyond frustrating, it is beyond just lying down because you don’t even have control of that option? Monday started with trying to drink orange juice and falling down for a long time, 45 minutes? A hour? So no, no real energy to start the week.
Tuesday evening, I cried and cried for no reason at all. Not a dainty leaking of tears but a spontaneous and uncontrollable sobbing. I cried because I was so tired and I knew that wasn’t going to end. I didn’t ask for comfort, the tears came off and on for hours. It hurt to breath and when the time came to sleep, I couldn’t because each breath hurt, and with more and more sedation I lay there for an hour the bed elevated to keep the air passages open. I thought, “Why won’t they leave me alone, so I can die, but without all of this….this distraction.” But I said nothing. When you struggle and each breath hurts it is hard not to think about dying.
Wednesday morning, it still hurt to breathe, I was tired where I would have lain down and just stared at the wall if I did not need to get dressed for conduction testing. Try to remember to smile when you wheel past the neighbors, because I’m too tired to explain what this feels like; that inside my bones have turned the colour of ash. I am decay. But I don’t say anything. My heart is already erratic to the point that my body shakes and it is less than three hours from getting up.
I am asked if I am planning to go to the park, I say slowly that I can’t go that far by myself. Well, you should go to the park, I am told. I remind myself to smile. After testing, I sit and methodically go through and answer the comments on the blog, in case I am too weak later. It is a commitment I made and people matter.
I stare at the wall and wonder why I don’t fantasize about running or taking a trip or some aspect of my former life. I wonder why I don’t say no to doctors and how even though I don’t know how I will make it through tonight I will be making the two appointments I have for tomorrow, including the “Emergency GP” meeting which will mean I will have my afternoon sleep delayed.
Instead I think about why I haven’t sold off my collection of rare Victorian ghost story books. I think about talking to my neighbor downstairs about when they are away and getting Linda to help me move my classical double bass and bow so that I can practice and get up to a decent level before my hands give way entirely. I realize I won’t sell the books become somewhere inside, I haven’t accepted that it is over. And when I do sell them and think nothing of it, after the years of collecting them, then I will have held my mortality, and eaten it, so it is a part of me. I all think this while lying in bed, trying to sleep.
On the way to lying down I just risked falling down and heart pain because the toilet wasn’t flushing correctly. I pulled the lid open and after staring, fixed the problem by reattaching some rubber parts that were out of alignment. My fingers were dirty from the rubber and as this is the most “butch” thing I have done in years, I wonder as I wash my hands if I can call myself a ‘butch lesbian’ now, since I finally managed to fix something. I’m amused but too fatigued to smile, because there is no one here I have to force myself to smile for.
So now, awake again, as I stare out into the darkness, I am unable to remember if today was sunny, raining, or overcast. I can only remember that I must awaken tomorrow, must try to change my underwear before the home care for assisted showering arrives; and must leave early to wheel to the GP’s, then home to sleep. I need to sleep right away so I can wake to dress again to go to the dentist for an hour plus of cleaning and scaling. Then home to write the post for the day and put it online, at which point it will be midnight.
The dental scaling is the same reason I don’t say no, or just lie in bed, refusing to go to whichever weeks new “urgent” test or that “urgent” meeting. Because, I can’t, I won’t admit to myself that it is over, that there is no point in worrying about gum recession anymore. I cannot fantasize about another life because I don’t know what to fantasize about. It is THIS life that I want. I will cry again tonight because I am so tired, so worn down. But I will not change, not alter nor falter from what has been set before me.
I think back to friends who had chemotherapy and how sick it made them and how one it gave insomnia and pain for two to three days and just when they were caught up to the point of almost being sane, it was time to go again for another dose. And they cried and they lost hair and they kept going back for another dose when they were too tired to do or see anyone else. They wanted to live. And even though they didn’t know that the chemo would guarantee they would live, they would force themselves, still crying and shaking, if that is how it had to be, to be there for the next dose.
Someone who knows my history of needle phobia when they found out I had a second needle, completely un-sedated blurted, “How? That’s impossible for you.” How did I? How did I do something I had never done before not just once but twice for a test I still don’t know the value of? I did it because I want to live. And being asked to do one impossible thing after another with absolutely no promise of hope has become standard. I either must accept that my pain, and the anguish of these tests have no meaning at all or find a way to keep going. So then if I don’t die in the night, or trying to breath, or from heart problems then I will move an inch closer to something or someone who might say that however diminished or basic my life will become, I will live.
I continue not because of hope but because I refuse to abandon all hope. I know I am terminal, and I know that I still, in some way, must shelter a piece of me, a sliver which hopes otherwise. In Oncology, even when it becomes apparent that the Chemo is not “taking the patient to the brink and then bringing them back” that it IS killing them; the patients keep taking the doses. Too weak to be able to stop vomiting on themselves, they keep taking the doses.
I already have medical or disability appointments for the next two weeks. I keep fooling myself that I am still “searching for a job”, as if there was a job where you could take a majority of your time off in medical appointments, from day one. I have worked since November to find a job, to get regular care, to try and create a stable routine in which I can be secure. I have yet to experience it. I expect after my “Emergency” meeting tomorrow with the GP (and others?), I will have many more appointments, perhaps in other cities. And I expect I will go and do them too.
Today is a day I have a hard time picking up a can of drink and that is the day I start planning how to playing the double bass again? Maybe I am capable of fantasy. Or maybe, there are just so many parts of my life I haven’t faced, haven’t said goodbye to. Or maybe it is just part of accepting, wanting to play welsh songs in duet with Linda’s flute again, another memory to write before it is too late; before accepting it may be too late already.
I cry, I weep, I sob because it cannot be denied. But even still crying I go on, I continue and will continue because I am Elizabeth McClung, and while I live……I live.
22 hours ago