Sara from Moving Right Along is dead. The email to tell me she was in decline had been bounced Friday and come today; I didn’t read them, Linda did. When I had my diagnosis and was flapping around with the newbie panic of ‘OMG! I have a terminal disease!” she was one of the two people who wrote me to share her story, and that a diagnosis, that conventional medicine of what should make a person dead doesn’t mean they still aren’t making bread for fun years later.
Between us, and the advise of a salesperson in Sidney, Sara grew a prosthetic leg from the ‘leave it in water and watch it grow” Halloween legs. Halloween: when society openly tells everyone that WE are the nightmares. She sucked me into NamBloPro (still sounds like some porn star contest) and I ended up blogging daily over a year. I kept sending her postcards and before Xmas she emailed that she was watching TV, resting and feeling crap. We had suspected that after she didn’t mention the 13 mm tumor being removed that tumors were everywhere. So we guessed that as historically against Chemo, that she was taking what pleasure from life when and while she could. I don’t know. I hope she got my last postcard a few weeks ago and smiled.
Eric, her partner does NOT want emails or phone calls: he is grieving. And to have one of the two people who said, “Life goes on, even against death…” now dead, it shook me. I cried for Sara, and I cried for the loss of a dream that with enough attitude, or baring your teeth, that somehow death is overcome.
I was taking a bed day and a few minutes before the news I was having problems drifting in and out of consciousness. And when I saw the green and the circles, and then I woke, lifted my head from the pillow and tried to find my manga. I thought, ‘this is how they will find me one day....maybe today, just slumped over and that will be all.’ Linda who found me fading in and out, and called me back to consciousness a few times, later confided she thought that also.
It still hit me. Sara gone? Here I was crying because of Sara and Death. But I didn't fear death? Well the one which is living and dying, which simply is; the other is the emotion and the grief that goes with it.
I am in the end stages of autonomic failure, and how long that takes could be a day, it could be a month, it could be longer. I just keep going. Sara had been doing what Linda, today, said to me she was happy to see me doing: reading manga and watching TV – doing things that give warm feelings and pleasure. Taking in quality of life. This is what Linda felt I should be doing more.
I have been writing with different friends about how I am not the same person I was a year or two ago. And this is not the same blog it was a year ago. I am not quite as funny, not near as active, not an activist, my fights are personal, against my body, against my limitations. I am not as clever, nor do I have the memory. Those who have decided to remain friends I am thankful for because if I was in an equal relationship I am self absorbed, selfish, and not all that interesting. I ask Linda why she puts up with it as she isn't getting as much out of this relationship as she puts in! She just looks at me funny and says, "but you would do the same for me." So I'm selfish (I am a bit)....OR I am dying, I have finite boundries, extreme pain, severe limitations and failing systems and I am trying to strive to become more than just that. But you know what they call someone with cancer who strives, pushes themselves, and achieves what no one else in that stage of cancer has done before? They call them: a cancer patient.
Once out of the world of able bodied understanding, of signs of excellence no one knows what cost it takes to act, to send out a letter to a friend, to support emotionally someone. We press on through the tangles of expectations of the able bodied world, where “accommodation” is where an able bodied person is a bit more patient with you because you are ill….until they become impatient and then, well, that excuse isn’t going to cut it anymore. They can’t know what it is like to try to write emails or do complex tasks everyday with the equivalent of a severe flu AND weights on all limbs AND pain that screams in your mind all the time so much that you have say, “I’m sorry, can you repeat that.” And the person gives the “Oh geez, why don’t they just TRY!” sigh and repeats with emphasis.
Dying has made me wiser, but a very steep learning curve. All I learn about my own foolish preconceptions I try write for the blog. I am sure if I did it again, I would die better. But no one has the time to hang around in this purgatory, which is it, pain and a middle zone of fear, of hoping each day is the same and maybe one better and knowing that it WILL get worse. Well except maybe Lene, which is why she is hired to speak for those who haven’t the words. That she is still sane is a credit to her determination, and a blessing to those like me, who fade in and out of sanity at times. I, will of course spend my days, as many as I have both taking the time to find what enjoyment or pleasure there is, from manga, squirrels and other wildlife, to sitting with Linda.
But in the end, no matter how I get dressed, no matter how pretty I look or clever I write, this is who I am: a person who last night didn’t know what “Four” meant. I am a person who has one to two grand mals a day, a person who burns, literally, as my body cooks my organs, my heart so erratic that the majority of beats are a mix of the four of five erratic. This is me. This will be me until the minute I die. You can dress me up but I will always be fighting, what, the immune system in my head, the Lichen (yeah, the stuff that grows on rocks) which is turning my vagina to liquid, the lungs that don’t work, the sweat glands that don’t work, and yet I live on.
Sara’s death asked me how I want to be remembered, because people often don’t take the time when you are alive and still fighting to do tasks to have a eulogy, that is saved until you are a tin of ashes. I hope I am remembered as a person who while overly determined to go against the perceptions of convention, the greatest of these is that I am not the disease. I am not the disease. I am the person who sends out postcards, I am the person who sends out letters, and pictures, and packages to people. I am the person who sends out emails. This disease robs me one at a time of my ability and strength to continue as this, and the time I need to recover. Or as Linda says, “you give until you are empty and then you keep giving, even when no one supports you.” So, sometimes I collapse, or go a little loopy. Sometimes I take a bed day. But to give, to care, to reach out, to live I Cor 13. To prove in this day and age that love wins. In a society where love gets no value, no priority, I want people to know that though I failed everyday, I loved, and I loved those never seen, and received the love of those unseen gratefully. Love Wins! Love is the victory of the ill, the disabled, the chronic conditions, those who have no voice except their own, and no community but the one they create.
I Cor 13
Though I had the gift and understanding of all obscure things and all mysteries or the power to level mountains because I had love, I had nothing.
Though I give riches away, and give my life for causes, because I had no love, it meant nothing.
Love suffers longs yet is kind. Envies not.
Love does not behave with disregard, or seek personal agendas.
Love does not rejoice in injustice but in truth.
They bear all things, they believe all things, they hope for all things, they ENDURE all things.
Where there be ‘secret truths’ they fail, where there is only knowledge it fails, or special people or powers, they fail. Love never fails.
There are far less people reading than a year ago. Some didn’t see disability, disease and what I learn living it as relevant or interesting. Some just left for other reasons. Some died. I am sorry for those who left because while I have spent 14 years in post high school education, I never LEARNED like I did in the last two years. And while I am dying, in fact I am death, I am also so many other things, and if you can only see the mask on death and disease on me, then you miss everything else.I hope like Sara I will be: a friend, a fragile individual, a fighter, and someone who tries in her own way to keep caring. Death will come, and they will find me slumped over. But not I hope because I didn’t believe that that which is truly eternal is no longer relevant in the 21st century, or in any time, on any continent.
Exit stage right.
11 hours ago