How do I speak of what is secret and precious? I guess I just start.
Loss. It is the pain of having something removed, something thought and assumed was mine to keep forever. The pain of having the choice taken away; having that possibility taken away leaves an ache.
Loss comes with chronic and degenerative illness/disability. If you are born with one and often if you are not and get one for no 'why?' at all, then society shows and tells you over and over what you are missing, making your loss public instead of held in the privacy of your heart.
Someone might want to be a ‘Stay at home’ mom, but no one wants or thinks about being a ‘dependant and ill mom’ or a ‘stay at home person’ who watches the life they planned for themselves being done by others. They don’t think they will have to lie there and hear of cousins or nieces and nephews, who now do what they had planned for themselves, if only able.
Within disability and illness we talk about spoons or coping but we don’t often talk about the loss that we feel, see, brush up against daily and weekly. We don’t have an easy theory for the pain of loss which hits us in the face every time we leave our stable environment; or haunts our dreams. There are the things, little things, we fight to hold onto: the ability to talk with friends, to drop down to a restaurant when we want, to go to a movie, to have a date, to go shopping, to go spontaneously for a drive, or to go spontaneously anywhere. As time passes, we give up some of these fights as we put our energy into survival. For me, every loss makes me feel withered and small, that it is not the choice I have lost but part of me.
I get bitter when I hear people talk about doing the crosswords ‘while they are waiting.’ Bitter because each day I work at my highest levels just to email people. And each day I am ill and cannot email, I fall behind. I will never have the capacity mentally to do a crossword, nor a life where I have so much time that I am ‘waiting’. And that is the loss I feel over just a crossword puzzle.
So how then do I as a woman dedicated to sports sit on the sideline? How do I accept that I spent 14 years in order to NOT teach people about Victorian Literature or History, or English Literature or Creative Writing. And instead I try and grasp the cloud-like wisps of living with disease and dying and write them down. To fill the critical ‘between the lines’ of every heroic crip story, and every disabled person or dying person who pogo stick hopped across their town or wheeled across a distance to raise money for research. I write the rest of the story. I write about the nights we spend lying there, just thinking, and the mornings and the trembles in the hands and new symptoms showing up and not knowing if they are going to stay.
Loss is painful and it seems in many ways, every time I think I can take it, the pain of loss hits again. Does it ever end? As soon as I come to peace with myself, and accept this is who I am, I lose something else. Or am reminded of something that I had not thought of. Or worse, I forget that any loss I have does not affect only me, or redefine me but force others to redefine themselves and our relationship.
How to describe the feeling I have when I wheel out and Linda and Cheryl are talking in low voices? They see me and Linda stands, looking down on me and says, “Why don’t you go and play on your computer in the study, Cheryl and I are talking about ‘Adult’ things.”
It is the pain, so gasping and sharp it is on the edge of ‘exquisite’, like the feeling when salt is applied to a wound, that first overwhelming microsecond.
Somewhere in all the loss, in all the little memories of pain, and in the dreams and body memories that make me cry when I wake to find myself in a hospital bed, there are still moments of sweetness. More than just a willingness to trust a partner or someone and be taken to places where people may not know my condition, may make things worse and so those with chronic and degenerative conditions have a horrid time. That happens and yet, I and I think ‘we’ risk again.
The questions must be asked. What is important now, not the ‘before’ life but now? What can I be, what can I do? What life can be constructed? These questions are answered. For those with less time, they are asked and answered every adjustment, every major change. How do I want to face my death? How do I want to be remembered? Who am I after all?
There was a movie called ‘The Bucket List’ with Morgan Freeman having cancer and no treatments work and yet he has all his hair and looks great and is sharing a room with a billionaire played by Jack Nicholson. And the basis is that what have we denied ourselves over the years we should get back in dying. So with unlimited money it is not about growth but about how to be selfish and shallow: that dying doesn't include caring, family, or self examination, it was about driving fast cars and jumping out of planes in exotic countries. The movie not only got immediate popularity but for the “Me” generation, the generation now, people started making their own “Bucket List” of what they wanted to do before they die.
Someone said to me recently that in North American, with so many needs met for those who have the money, there is no spirituality. Maybe so, as the generation which has the money and power seem to want even death to become about pure consumption.
For those of us with Chronic Illnesses, degenerative illnesses, chronic conditions, terminal conditions, I have found, for me, and others that there is another list, a genuine ‘Bucket List’ which has nothing to do with the fantasies of an able bodied life. Those dreams are burnt away. I dreamt of seeing my name up there in the top 10 nationally in fencing Epee. Now that seems so...well, not where I am. And while I would pay a lot to be able to fence on a strip, a piste again, with full motion and power, to stand with the strength literally radiating out of me as I move my body, limbs and torso, fingers and mind all in unison of microseconds. Just one bout. And yet that is not where I am either. That is not on a list because that is part of what accepting loss is.
There is a list, almost invisible, written in the heart, because it is not a list that others or I control. Indeed, the aspect of having a chronic condition is learning that however type A I might be, I am not in control. And so, in hours and minutes and days of dying, in the talking with those who do matter, my family and friends, we talk, we rest, they help me to bed, they watch over me. The knowledge that I will not be here again, I will not come this way again, I will not see this summer again perhaps, probably, informs us all.
We talk of places, San Francisco, and of things like food, or experiences. I remember seeing fireflies and it turns out that no one has seen one for a long time. I saw some when I was 21 when I lived in Gettysburg, PA. I ask if they are dying out. The others think maybe so. And I think, and say that it sure would be nice to see some again. Because there is something magical about fireflies isn’t there? Ray Bradbury knew that....they are the eternal summer, the magic of a warm, quiet, still night. And then the conversation goes on and we talk about a road trip maybe, fantasy probably, because fireflies cannot be produced by wishing, nor controlled. I will not use my last strength and funds to chase fireflies. There are so many other things I would like to share seeing with Linda and Cheryl (like Sakura-con! And trying Jyudo, the Japanese Archery. And doing some 5K’s).
So fireflies and meeting Cheryl’s family go on the real ‘Bucket List’ because that is the list that maybe will happen and probably won’t before I kick the bucket. And I can’t buy them, I can’t own them, I can’t will them, they either happen or they don’t. And I think that is the same for many of you.
Whether for you it is the smell of fresh bread you have baked or if it is a day, a ‘good’ day, without that many rests, on the park, not to hot, watching the kites, flying a kite, coming back a little browned and exhausted. If that is on the Bucket List, then that is what you remember as you lie in bed, when the pain meds don’t work very well. Or you are so tired, so very tired that maybe it is time to really sleep this time. And you think of that day, because you had that day, together with the person you loved. It isn’t fast cars or expensive meals. But it is what gets you through the darkness.
Tomorrow or the day after I will write about the three things I have to remember from my Bucket List and the ones that I hope for, I think about, like holding a kitten. I haven’t done it but I think about it, day-dream of it. I hope that the people who read will share a little about loss, or about that experience they remember which gets them through the night.
Last week, the second night in Manitoba, we went out towards the van, Linda, her father and I. There had been flooding of the marshes and standing water and in the darkness between house and car I looked to the left, and slowed as I looked again and said, “Linda.. fireflies.” And she came and looked, and I wheeled into the black to see a patch, a ditch and a bit of wood lighting up with green dots against the dark. And Linda stood beside me.
I don’t know how long, a minute, more or less we stayed and watched. Because now, after all these years, had come the fireflies. That I will remember, always, because it was on my list of things I wanted to see. The list of things I knew I never would see. And yet there they were. Even if the rest of the trip wasn’t what I wanted, what can erase a moon, and fireflies, where none had seen them, where none of us there had seen any for ten to fifteen years?
I may seem very simple to you. Fireflies. But to have been there with Linda, to share them together is worth more than anything I can think of that I would do alone. That is one of my things I did before I kicked the bucket, I saw fireflies again. Unexpected, and yet, as precious to me as a taxi drive with Linda through a Japan town after midnight, the quiet streets and the warm glow after floating around on natural hot springs for an hour. After seeing through the mini tropical garden and green hazed smoke which came out of the vents from the spring itself. The memory of those nights, that feeling of contentment I will bring back to rub until all the sides are smooth from knowing it again and again.
Loss will continue, the pain will continue, death will come forward, my life becomes limited. Yet mixed in there will be that single minute, on a field, with Linda, her father behind, and the illumination.
4 hours ago