the last burnt sienna crayon

Leonard’s story is a true one. In the years between 1917 and 1928 there was a worldwide epidemic of Encephalitis Lethargica (EL) which left patients in a seemingly catatonic state. (Warning: If there is anyone who has not seen or does not know the story of Oliver Sacks and the EL patients as told in the movie and book Awakenings, this post will contain plot spoilers.) In the summer of 1969 neurologist and author Oliver Sacks (renamed Dr. Sayer in the movie, as suggested by Sacks himself) was the wizard who experimented with the brand new, in ‘69, Parkinson’s drug Levadopa (L-Dopa).

And they woke up.

People like Leonard who had been asleep for 30 years since childhood or young adulthood — they-woke-up!

Can you begin to grasp the enormity of that? To fall asleep as a child and wake up in your 40s? What the world must have been to you after all that you had lost! What emotions would you have to deal with, and would you be ecstatic to be alive or angry for the life you had lost? What about the family you had left behind in your illness, then regained as a different person? What about the griefs, the loved ones who died, after you had fallen asleep, to wake up and find out they were gone, but you were here? What about the new technologies and culture which you didn’t see evolve slowly, but were introduced to in a flash? What about discovering life in a very post pubescent body having never been old enough perhaps to even fancy someone before? Well, Leonard and the other EL patients treated by Dr. Sayer/Sacks went through all of these confusions.

What does that have to do with my own story? Anything at all? Maybe.

You see, those little red tablets The Wizard prescribed for me, although they weren’t L-Dopa, are used for the same thing, to increase dopamine in the brain. The two drugs are sometimes used in combination with each other for Parkinson’s patients. Dopamine is one of the three neurotransmitters thought to play a role in clinical depression and it is the neurotransmitter responsible for pleasure and motivation. Dopamine has to do with energy and rewards and is implicated in the ability to experience love. I have read that we are all dopamine addicts.

I don’t want to describe the life that I had wanted to replace, that’s another story and not for here, but if you can imagine a life with absolutely no motivation and no pleasure, no reward and therefore no will, though it doesn’t constitute catatonia, it’s not really something that you would prize. The difference within 5 days of taking a dopamine agonist was not only startling, it was a bit scary too. As the EL patients, I was both ecstatic to be alive and angry for the life I had lost. And I was now awake enough to be aware of how much I had lost. I thought I had been before. But there was more. More I hadn’t seen before. And having played with my brain chemicals it has taken me a little while to find my feet again when it comes to relating to other people. I still don’t feel that I’m getting that part right. I can’t seem to read people, situations, emotions quite like I used to. I hope I get used to it.

My general pessimism hasn’t completely gone, either. That’s developmental and too entrenched. So the thought can’t help occurring that if it’s too good to be true it probably is.

Sadly, Leonard’s story does not have a happy ending. He began to develop a tolerance to L-Dopa, as all the EL patients did. His condition began to deteriorate until he reentered a catatonic state. And his mother had to watch. She lost him again. And he lost everything. Again.

I’ve been traveling this road with MS and depression for more years now than I haven’t, and I am aware of the instability of things. I am aware that everything changes, life is gained and life is quickly lost. I don’t know what will happen next in my story. I don’t know if I will continue to find a balance (it hasn’t been very long like I now am, anyway). I don’t know and sometimes I get scared. Will I simply “forget how good it is” “what it is to be alive”? I will probably “need to be reminded about what [I] have and what [I] could lose.”

And I’d like to find a way, with all of my gains and my losses, with all of my joys and my griefs, with my new life and the lives that I have known to make them one life and not many. To make them an integrated me. Not one that bounces back and forth between this and that.

And you, my friends, help. You do. You are able to remind me how good it is. Because if it starts going back to my old life again, like it did for Leonard, I don’t know what I’ll do.

It’s days like today that make me feel like I perhaps should have never come here, and then I would never have to wrestle with the question of going back. Can one ever go back?

Days like today that are filled with memories, happy ones, important ones, trivial ones. It wasn’t always wonderful, but it always happened, and could be relied on. Days like today are filled with traditions, that perhaps mean nothing in and of themselves, but mean everything in the observation. Days like today used to be filled with people who are no more. People who weren’t always easy, but they were reliable, but now will never be again.

Memories and traditions and people. that I now feel that I have thrown away. That had been my intention, wasn’t it? Starting over can’t be done half heartedly.

And I didn’t do it half heartedly. It’s only that some days it just hurts a little more than others.

Happy Thanksgiving, my friends. Believe me, I am thankful.

This morning, the sky outside was completely black with clouds and the rain drove itself hard into my window. Yet, somehow there was yellow sunlight reflecting on the trees in the park. Where does that come from? it seems to happen a lot in this part of the country. black sky, sunlit trees. The dichotomy suits me.

A few months ago now the phone rang. “Ro died yesterday.” it wasn’t a shock, she was 93 and had been poorly for a while. But the familiar sinking feeling that comes along with the death of a friend was inevitable. I guess, when a person dies, sometimes it’s a sinking feeling, and sometimes it’s an implosive collapse. Sinking doesn’t last as long and is more easily recovered from. I’ve experienced both. I am sure it makes no comment on the worth of a life how the living react to their death.

I found out a while ago that TL died. She was 29 and died in a car accident. I didn’t really know her very well, and had never been in touch since school, but had volunteered working in summer camps with her when we were in high school. Again, that sinking feeling. Our lives had brushed against each other enough to have torn something out of me when she was gone from this sphere.

Two and a half years ago, my friend M was killed. he was 23 and had his young life forcibly taken from him while working with displaced children and communities in northern India. We don’t know who we don’t know why and even the mere mention of his first inital will cause so many who read here to recall that implosive collapse so I will say no more.

Oliver Postgate died recently. He will live on in his creations that meant so much to so many children (and adults). Michael Jackson? His body gave up the fight. The list of celebrities stretches on. We didn’t know them. We thought we did, but we didn’t. We thought that they had given something to us, and perhaps they did. Perhaps enough so that we felt the rip of something being gone.

My grandmother died 10 years ago, my father, 12. My aunts and uncles, I’ve lost count of the number and of the years and the ages. I am certain that it makes no comment on the worth of a life to us if we can no longer, nor any longer do we try to, remember the history or the particulars.

Ro went to my church and was a stallwart member of my community. I looked up to her and can not forget her.

In fact, I don’t think I even would have rememberd TL but for a photograph that i have in my albums. But as her image is in my book, I will never forget her.

M was my friend and a friend of my friends. He ate at my table and played my piano. We talked about photography and when I see his face in snapshots from parties, I always feel slapped. That face does not inhabit this earth any longer.

We are not allowed to forget celebrity. It isn’t that we ever knew them, but we did know something of them. They were a part of the jigsaw we have appropriated into our lives and is now missing a piece.

Then most recently there was Ra. Ra was in her early 30s and the mother of three young children, one of whom was newborn. Ra was a part of my life, and now she isn’t. I didn’t often see Ra and now I will never see her again. Only weeks before she died, I was posting baby congratulations onto her photos online. Only weeks before she died I was thinking of her, of her family. Now I think of them for different reasons.

Thinking of Ra reminds me, more than the others, more than I am comfortable with, that someday I too will not inhabit this earth, none of us will. That someday, as I can no longer talk to or see or touch my own father, my daughter will no longer have me.

I wonder about you, dear reader, and whether when I am gone too you will still remember me? Did you know me well, did we speak, do you remember? Have you seen my picture, or something I have created and did either stay with you? Was it discarded or held onto by you? Are my words remembered, or will they die with you too? What will my legacy be, or will it be wasted? What have I done that will touch those who come after? And on the last day of the world, would things have looked at all different if I had never been here, and what does it matter? If a butterfly flaps its wings in the 21st century, will the world look different in mellenia hence?

Am I only flirting with an unobtainable immortality by bringing my life near to anyone else’s, in the fruitless hope that my memory will live when I do not? Is that why I write here, is that why I take my photographs, is that why I allow my life to brush with anybody? And in that meeting am I passing on anything real or true or worth saving? Is that even possible, or will it all disappear and die? It is a mystery too big for me.

Every day a little death in each of us, that’s the way we were created, though we live for so many years not knowing or realising it. Something is torn out of us when we confront it, when too many people are no longer with us to go on pretending that there is any kind of earthly permanance. We clutch onto our photographs hoping in someway that it can put something back that is now gone, we write down our memories hoping for these changes to halt themselves through our rememberance and our stories.

The fragility of life is entrusted to the living, in the words and memories and photographs that remain. Though words will be forgotten and photographs will eventually be turned to ash. At least presently, I know that the butterflies who have flapped their wings in the midst of my own life, have made this world a very different place.

Selfishly, and vainly, I find myself wondering about my own wings and of their ability to imprint a picture on the world, from any angle or any distance.

I don’t think I’ve had a normal emotion in 12 years. Until now.

Grief is a normal emotion.

Grief is a normal emotion, and this time, I am experiencing it in a different, ‘normal’ way. And I’m finding it very confusing. I don’t know what it’s meant to feel like. I’m not quite sure what to do with these ‘normal’ emotions yet. It’s very new.

As kerensa commented here awhile back, grief looks and acts very much like depression. And, as I have written here before, over the years, I’ve experienced a lot of grief. Now, I’m not claiming that I’ve not been depressed as well (that started 16 years ago, and besides i have an illness that takes chuncks of tissue out of my brain, so something’s got to get muddled up in there along the way), but if you look at those last 12 years, they are peppered with death, loss and ill health.

8+ deaths (including my father and grandmother), 4+ house moves, emigration, several unrenewed job contracts, 5 years of unemployment and application/interview rejections, 2 unfinished degrees/qualifications, diagnosis of chronic, lifelong illness, 3 lengthy hospital stays with following convalescence and housebound times, loss and recovery and loss then recovery again (etc.) of eyesight, walking, speaking etc. . .

I’m not going to go on, but it does. And this isn’t a pity party, and I’m not looking for you all to read that and heap loads of sympathy and kind words and such, i mearly list all that there to make the point that it never stopped! And everytime I began to go through the grief process, for whatever loss I was trying to grieve for, a dr. jumped up and said “You’re depressed! Better give you some pills! We can make these things better now, you know.” Maybe I was meant to be feeling depressed. God knows, I’ve had enough reason to be. Maybe I needed to feel the pain, the denial, the anger, the depression if I was ever going to accept anything about this painful world we live in at all!

Because when I was a child the storybooks told me that everything had a happy ending, and it doesn’t. Because every dr. I’ve ever met has told me to take a pill and I can magically have that happy ending.

It’s a ****** LIE! (sorry, all this grief stuff must be starting off in the ‘anger’ stage. thank you, i’ll try to control my outbursts from here on.)

You see, they have never fixed it, they can’t. I’ve spent 12 years popping various different pills and suffering the consequences and in the last 3 years it litterally ruined me and took something so important away from my daughter, her new mum, any possibility of her having a new mum.

How was I supposed to have normal emotions?! How when the chemicals were quite literally pulling my strings? I do have anger about that. But something tells me that that’s normal. I don’t know anymore. I don’t know what’s ‘normal’. But I think I’m going to try to find out.

I left something behind when I came back from my journey to my homeland last month. I knew when I left on that trip that something would change, and it did. But I have imposed on your time for long enough, so that’s a story for another time. I’ll probably delete or edit this later anyway.

But a few weeks ago, I started to feel like a mother for the very first time. And that feels so good, so normal.

Then R died. Now I’m grieving again. And I’m not sure if what I’m feeling is normal, because I’ve never felt something quite normally. I’m not sure what it’s suposed to feel like. Because there was always a dr. saying ‘well, this isn’t normal, so we’d better fix it.’ Ok, it was painful, but I suspect that it was normal. This time, I’m determined to let it happen, ‘normally’, somehow. No matter what happy ending the doctors try to offer me.

My friend died last Wednesday.

My friend is dead.

And I feel like I’ve been kicked in the stomach. And I’m trying to understand, and I feel a bit like I did 2 and 1/2 years ago when I had another friend who died, and I grieved and I cried and I felt like I had no right to be grieving so, as I was not as close to him as others were, but I did, I grieved, and I felt guilty back then for doing so. Perhaps I didn’t (and don’t now) so much feel guilty for grieving but instead for not having taken the time to know him then or her now better. And now I will never get that chance.

no. . . i feel/felt guilty for grieving so much.

My friend died last week and something hurts, but at the same time keeps reminding me that we were not close, that I rarely saw her, that we never spoke on the phone, or had a heart to heart or even sent Christmas cards. But I keep thinking of her voice and how comforting it was in a crowd of strangers and how I always thought that she had the most beautiful speaking voice of anyone I ever knew and how I will never hear it again. She had often been a comforting presence to me, and how much pain she had just been through, and how unfair.

I dare not think about her husband, her three children, her newborn son. Yet I try, when I can, to pray for them. I try, but, it’s shaken. What good does prayer do? It couldn’t save my friend. It was never meant to save my friend, but we hoped that it could. We all prayed. Those who knew her, those who never knew her but only cared for someone who cared about her or even cared for someone who cared about someone who cared about her. I Corinthians 12:26 says “if one part [of the body, of Christ] suffers, every part suffers with it.”

I don’t think I ever prayed so hard, for two weeks we all prayed. All over the world, we prayed. Why did we pray? My friend is dead.

Now I look at all of my friends. I look at them and try to be normal, I try not to speak of it because perhaps one is not to mention the unmentionable? I try to be normal with my other friends, because most of them never knew of her, and I don’t really want to speak of it, or anything else really, anyway. I look at all of my friends, but wonder if in two weeks they will be dead too? And that hurts. We never expect this to happen. But it does. The last time I saw her, I did not expect it to be the last time I would ever see her. The last time I saw my other friend who has died, I did not think that it would be the last time. Why did I know them, when now it is done? Why do I know anyone? When will be the last time? Was it today?

And what is death anyway? I know what my faith has taught me. But I don’t understand. Perhaps right now, I don’t believe. Perhaps the question is not, ‘what is death?’ but in the end, ‘what is life?’

my friend lies dying in a hospital bed, 3 weeks after giving birth to her 3rd son.

and i’m finding it hard to care about much else.

“No one ever told me that grief felt so like fear. I am not afraid, but the sensation is like being afraid. The same fluttering in the stomach, the same restlessness, the yawning. I keep on swallowing. At other times it feels like being mildly drunk, or concussed. There is a sort of invisible blanket between the world and me. . .”

C. S. Lewis begins his notebook on grief this way. He wrote these journals on the subject, not as a detatched academic exercise, but as a way of helping him to cope after his wife’s death from cancer. I read this small book for the first time the year I was diagnosed with MS. It wasn’t a person who had died in my life, but my own life and future as I had always imagined it, as I had always planned and hoped for it. So I grieved, I reordered my expectations, I found new hope for a different kind of future, whatever that might be, and I came to some kind of acceptance. I was ready to face a different kind of future. “Your will be done”. I trusted that back then. I trusted that His will, was a good one. I hadn’t made enough mistakes to have been discouraged yet.

I didn’t relise that grief, once accepted, does not always stay accepted. What I mean is not that the original grief becomes ‘unaccepted’ once again, but that the original grief will always change a bit every so often, a day, a month, a year, or whatever, so that the new grief must go through the same process as the first one did in order to come to the same acceptance of it. That’s pretty exhausting.

For example, when my father died, I grieved, I went through the stages, I came to acceptance. But that grief changed. My loss of my father was a different loss when I was 21, newly married and an immigrant in a new country than it is today when I’m more than a decade older and I know he will never sit in the living room of my house playing with his grand-daughter. I didn’t have those things yet, so I did not experience the loss of him not being a part of them. But now I do have them, and his absence is made real in a way that it could not have been the first time I grieved for him. Does that mean that I must go through the whole grief process again each time something new comes into my life for him to not be a part of?

And what about MS? I might have been able to appropriately grieve for my future as I had imagined it when I was 20, but now must I go through the list of more concrete things to wrestle with? So today I may grieve for the mountains I will never climb (both physical and symbolic), but when I come to accept that and my body changes, deteriorates, further yet again, must I then grieve tomorrow for the roads I will never walk the length of, and then the day after that for the things I will never see at all? Wouldn’t it be nice if we could get it all over and done with and grieved for in one go, complete and totally accepted? Perhaps those of stronger faith have been able to do that. Perhaps that is how I was able to accept things so much faster in the past? I was younger, more trusting?

But I’ve been collecting my losses over the years, and have never been quite sure what to do with them. They haven’t spaced themselves out so neatly and tidily as to allow me to confront them one by one, and I’m tired and a bit short tempered with it all.

And what about faith in the midst of it all? Yes, I know it is there, but right now (and much of the time) I am more likely to relate to what Lewis says near the beginning of his book ” Talk to me about the truth of religion and I’ll listen gladly. Talk to me about the duty of religion and I’ll listen submissively. But don’t come talking to me about the consolations of religion or I shall suspect that you don’t understand.”

I doubt Lewis had any intention as he wrote of ever having his thoughts published (I still haven’t decided about this post). How could he be so brutally honest if he had ever considered sharing his thoughts with the rest of the world? How could anyone not remain academically detached in order to speak publicly of such things (I am being candid now, because I doubt that I will hit the ‘publish’ button)? Honesty with the rest of the world is difficult. Honesty reminds us that God is there and knows our shame, our shame at being human, anyway. We know that he knows us completely, but it (our grief, our deeds, our shame, our failings, our humanity) still somehow remains private and even a fiction until we share it. Perhaps that’s why we write these confounded blogs. Somehow, though we must believe He is not, God always seems to remain stuck there in our heads. Somehow, though we are aware that we only need confession to Him and Him alone, it never really becomes real until our darkest wrestlings are made public. Until we are made public, and forgiven and loved. (Yes, I am aware this doesn’t stand up theologically, but on a different level, perhaps it does emotionally?) Perhaps that is why He didn’t stop at Adam and made all of these other people as well, even though, on the whole it made things so much more complicated and messy. Perhaps in order to grieve, to accept and to return to joy, one must find and recognise and trust where God’s Spirit walks on earth now. One must remove him from the cofines of our own heads?

I don’t know. I’m only writing a notebook. Just like C. S. Lewis. And tomorrow perhaps I won’t be lost in my head anymore because perhaps I will have indeed hit ‘publish’ and told you. and perhaps I won’t because I will realise that one way or the other, ‘this too shall pass’ and it probably doesn’t matter anyway because something else will happen to take the place of these thinkings.