(See all posts related to Electra's ongoing treatment)
It's been nearly two months. That's weird to me. Like so many big events in life, the time since Electra died (I'm trying to make myself say this instead of "passed on" or some other euphemism) has maintained that weird dichotomy of seeming like it was just yesterday, and yet that it was ages ago. I don't know whether it's shock that does this, or we just don't really grasp the passing of time as much as we think we do. But in terms of progress, it's been a rather eventful two months. I've attended two memorials on two continents, emptied a flat, visited friends and family (mine and Electra's), had a visit paid to me by my brother, moped around the house for a few weeks and returned to work. It's been an intense period, but I'm increasingly aware that this period is drawing to a close. Normalcy is beginning to dawn anew, and though a rocky path lies between that sense of regularity and myself, it's a good destination to have.
You see, any sense of normalcy I once had (and let's be honest, I had a tenuous grasp at best on the concept at even the best of time) has been rather shattered. I made a point throughout Electra's treatment to spend time in London with friends to avoid becoming completely mired in sickness and despair. So I've not been totally disconnected. But for nearly a year and a half, my life has been split firmly between two cities to an even greater extent than when we were in a committed but long-distance relationship. Moving between two locations makes it hard to truly settle or feel at home. Moreover, the sword of Damocles was ever-present: even when things were going comparatively well, the spectre of sickness and death loomed large. So "normal" was quietly packed away in the closet. It's now time to dust off that box and try it on for size once more.
This comes in many forms. Work is a big feature. Although I'm glad to have taken off the full four weeks that I did, I'm very much ready for a return to routine. The first few days and even weeks of my time off were filled with things that needed to be done-organising the memorial, emptying Electra's flat, and so forth. The last week of my time off was spent with my brother and was a fantastic time. But in-between those two was the thoughtful time. The time to collect thoughts and come to grips. That was vital, and again I'm glad to have had it. But near the end, it started to settle firmly into mopey territory. Suddenly the days were spent lying in bed or drifting around my empty house. And that's not good.
I know myself pretty well, and one of my failings is a periodic tendency for what I lovingly call "low mood" periods, but are realistically slightly depressive episodes. These used to be nearly crippling when I was younger and have mostly faded from memory. However, every few months, one will rear its head and I will get "blue", often for no reason. And this makes me susceptible to getting even more down in response to events like those of recent months. And I know that moping around does me no good as I will spiral further into depression. Instead, I need to get out; see people; do some work; sleep and eat to a schedule. So I'm very much glad to be back to work and to my social circles.
On the other hand, I know this is an ongoing process, and that I should–and do–expect periodic resurgences of emotion and depression, and need to brace for those. This will take me awhile to process. I've already seen some effects of this. A few too many drinks and I can expound and rant and get overly emotional to close friends who deserve better. Quiet periods or certain songs, shows or thoughts can trigger memories and emotions. But that's all part of the process, and I'm dealing with it OK. And I'm trying to get some good from the experience.
If there is to be a silver lining from the hell of the last year and a half, I feel it is this: life is short. I know how much of a cliché it is to come to this realisation after a tragic loss, but there's a good reason why it's a cliché: it damned true. In his amazing and moving Stanford commencement speech in 2005, Steve Jobs touches on this issue, stating that knowing you are going to die frees you to do what you want, and it is this message I am trying to embrace. You see, I rarely just do what I want. I think. I ponder. I over-analyse and weigh up options. I get second, third and fourth opinions and ponder more. I rarely make a truly awful decision, but I miss out on many great opportunities because my indecision drags me into the quagmire of inaction. And I want to change this.
Deliberation has a vital place. Decisions should be made carefully, and risk mitigated. But to become so risk-averse as to not take chances deprives you of some of the best occurrences of your life. And it fills you with regrets. Mark Twain once said "Twenty years from now you will be more disappointed by the things that you didn't do than by the ones you did do. So throw off the bowlines. Sail away from the safe harbor. Catch the trade winds in your sails. Explore. Dream. Discover." And he was right. When I think back to my regrets, I rarely think of that which I tried and failed at. I think of the times I didn't even step up to the plate, and just let the pitch go by. Those are the things that eat at me.
So I'm resolving to do better, and have done so to some degree already. The results haven't been perfect, and neither will they be in the future. I have faith, however, in my closest friends. Even when I make a misstep and go too far or make a poor decision, I trust in those around me to help support and love me and with their strength I will persevere. My friends are precious to me and their love and care has buoyed me through the most turbulent seas I've traversed; I know they will continue to do so, just as they will tell me when I'm dangerous waters above my head, when my carpe diem attitude takes me perhaps too far.
But I will try. Because the trying is the important thing. I'm young, in one of the greatest cities in the world and have good people around me. Now is the time to try. I know I will fail sometimes. I know I will do things that seem stupid in retrospect or make things difficult or uncomfortable. But I will try them. I have too. I'm sick of wondering "what if?". Even when the outcome isn't what I hope for, the attempt and the asking is what's important, sometimes more so than the outcome itself.
Electra had a bubbly, cheerful enthusiasm which was infectious. I lament how much of our time was spent with me tied to a Ph.D. I wasn't fond of and how much of our time was limited by geographical or financial constraints. I don't want to make that mistake again. I want to make new mistakes. Fun mistakes. I want to go out on a limb more, to strive for the freshest fruit on the furthest boughs. This is how I will force myself to return to normalcy: I will push for a better normalcy. This is how I will treasure Electra's memory: I will forego fear and will live my life fuller than before.
Regrets are about lamenting a past that cannot be changed. That's not helpful; what is helpful is to mourn, to remember but above all else, to learn. We learn from what we've done and we grow from pain and tragedy. And as long as we are in the land of the living, we have a duty to enjoy that. To live, to laugh and to love. 2012 is off to a pretty shitty start. But I will be doing myself, and Electra's memory, a disservice to dwell and hate and mope. Like Canute, I can command the tides of history to recede as much as I want, but it will never happen. Instead, I will embrace life and do my best to honour and cherish the memories I have and to push forward to the next, better, memories. Or–if things go crazy enough–at least I'll get some cool stories out of it.
Friday, May 11, 2012
Monday, April 16, 2012
Electra & AML: My Phantom
(See all posts related to Electra's ongoing treatment)
There is a fairly well-known phenomenon in people who have suffered the loss of a limb, be it through accident or amputation: phantom limb syndrome. In essence, this is the sensation that a missing limb (or sometimes even an organ) is still present. The person suffering such a condition feels as if their arm (or whatever) is still present and moving around, long after this is provably untrue. I don't know a ton about this, but my general understanding is that it is a form of muscle memory and a result of the complexity of muscle movement. When we move our arms around, we are involving dozens of muscles and not just in the arm-the shoulder, back, chest and flank muscles all play a role. When the arm is no longer there, these muscles "remember" the movements they've been conditioned to make and the impulse to do so remains.
I am starting to feel that I am experiencing "Phantom Electra Syndrome". In a very real way, I lost a key part of myself a month ago (the one-month anniversary is the 16th, which it will be by the time I hit "publish" on this entry). Losing a loved one involves a quick and obvious loss, as in the loss of the limb itself to an amputee. But the lingering effects go beyond this most acute removal. Because Electra was intricately involved in innumerable aspects of my life, not just the times and places where I interacted with her directly. And the muscle memory, the default reactions I got used to over three and a half years, remain.
Let me give one example: this past week, I returned to work on Thursday and Friday. On Friday, I needed to mail a letter, which precipitates a walk across the bridge to the post office near my office. In the past year, while Electra was ill, I would take this time to call her. I wasn't actively working and chatting didn't slow me down, so I could ring her up for a few minutes–often the longest conversation she could muster–without feeling like I was neglecting my work to do so. So, on Friday, when I strolled over the bridge over the A3, I instinctively reached for my phone as if to call her up and ask her how her day was going. Similarly, the night before, I almost tried to call her from the pub quiz, while it was being marked, to discuss the questions that had been asked that night. That was our routine-when the quiz finished and was being checked over, I'd fill her in on as many questions as I could remember, especially those that stumped us. That was our routine, since she wasn't in London but loved a good pub quiz.
Complaining about my morning commute. Sending her funny pictures I find on the internet. Telling her about a cool-looking film coming out soon. Discussing travel plans and meal ideas. All of these things became so habitual and frequent for Electra and I that they are all but hard-wired into my brain. Habit formation is a fascinating topic, but one of the key takeaways is this: the more we perform the same action, the less our brains actively work to perform that task: it just becomes rote repetition, and straying outside that is difficult. We form new pathways-of-least-resistance in our brains that ensure that performing these tasks is effectively automatic.
A friend of mine told me that returning to a routine would be the hardest part of all this, for exactly this reason. I don't think she's right in that it's the hardest I've experienced, but it's not easy. Right now, my daily routine involves lots and lots of small but frequent Electra pathways. My unthinking habitual response in many situations involves her in some way, and even though I know she is gone, I continue to reach for my phone, or think about forwarding a funny link to her, or even just reflect on how much she would like or hate a particular thing. She is my phantom limb.
There is a fairly well-known phenomenon in people who have suffered the loss of a limb, be it through accident or amputation: phantom limb syndrome. In essence, this is the sensation that a missing limb (or sometimes even an organ) is still present. The person suffering such a condition feels as if their arm (or whatever) is still present and moving around, long after this is provably untrue. I don't know a ton about this, but my general understanding is that it is a form of muscle memory and a result of the complexity of muscle movement. When we move our arms around, we are involving dozens of muscles and not just in the arm-the shoulder, back, chest and flank muscles all play a role. When the arm is no longer there, these muscles "remember" the movements they've been conditioned to make and the impulse to do so remains.
I am starting to feel that I am experiencing "Phantom Electra Syndrome". In a very real way, I lost a key part of myself a month ago (the one-month anniversary is the 16th, which it will be by the time I hit "publish" on this entry). Losing a loved one involves a quick and obvious loss, as in the loss of the limb itself to an amputee. But the lingering effects go beyond this most acute removal. Because Electra was intricately involved in innumerable aspects of my life, not just the times and places where I interacted with her directly. And the muscle memory, the default reactions I got used to over three and a half years, remain.
Let me give one example: this past week, I returned to work on Thursday and Friday. On Friday, I needed to mail a letter, which precipitates a walk across the bridge to the post office near my office. In the past year, while Electra was ill, I would take this time to call her. I wasn't actively working and chatting didn't slow me down, so I could ring her up for a few minutes–often the longest conversation she could muster–without feeling like I was neglecting my work to do so. So, on Friday, when I strolled over the bridge over the A3, I instinctively reached for my phone as if to call her up and ask her how her day was going. Similarly, the night before, I almost tried to call her from the pub quiz, while it was being marked, to discuss the questions that had been asked that night. That was our routine-when the quiz finished and was being checked over, I'd fill her in on as many questions as I could remember, especially those that stumped us. That was our routine, since she wasn't in London but loved a good pub quiz.
Complaining about my morning commute. Sending her funny pictures I find on the internet. Telling her about a cool-looking film coming out soon. Discussing travel plans and meal ideas. All of these things became so habitual and frequent for Electra and I that they are all but hard-wired into my brain. Habit formation is a fascinating topic, but one of the key takeaways is this: the more we perform the same action, the less our brains actively work to perform that task: it just becomes rote repetition, and straying outside that is difficult. We form new pathways-of-least-resistance in our brains that ensure that performing these tasks is effectively automatic.
A friend of mine told me that returning to a routine would be the hardest part of all this, for exactly this reason. I don't think she's right in that it's the hardest I've experienced, but it's not easy. Right now, my daily routine involves lots and lots of small but frequent Electra pathways. My unthinking habitual response in many situations involves her in some way, and even though I know she is gone, I continue to reach for my phone, or think about forwarding a funny link to her, or even just reflect on how much she would like or hate a particular thing. She is my phantom limb.
Thursday, April 05, 2012
Electra & AML: The Memorial and Eulogy
(See all posts related to Electra's ongoing treatment)
It's been nearly three weeks since Electra died, and I apologise for not writing more in that time. Dying, it turns out, comes with a lot of paperwork. Utility companies, banks and the council have to be notified, along with countless others. Funerals arrangements made and memorial services planned, belongings sorted through, and so much more. More than that, there is a general sense of listlessness that comes when the inevitable actually occurs. It's hard to get motivated to do much. And when I do, it's more about trying to get out and see friends and spend time; I have observed in myself that the busier and more social I keep myself, the better off I am in many, many ways. So the blogging has fallen by the wayside, and for that I'm sorry. Moreover, in this post, I will be relatively brief, save for the text of my eulogy, which I will include in full below. I want to discuss what we did for the memorial, and talk a little about what it meant to me.
Electra was cremated on Thursday, March 22, six days after her death. The cremation was something we hadn't initially planned to attend; we thought it was something the funeral parlour sorted out and we would simply collected the ashes. However, though this was certainly possible, a half-hour slot in the chapel was allotted, whether we used it or not, so Paul, Anastasia and I decided to do a small observance, despite the fact that we were not doing a traditional full funeral service, but instead a memorial to be held two days hence. The service was just we three plus two of Electra's closest friends, Emela and Kara. It was quiet and simple and intimate. Paul had selected a few pieces of music to the event, and had chosen a few poems about grieving and loss which had spoken to him, and he read these out loud. I said a few words about Electa and what she meant to me and why I thought she was special, and recited "The Egg" by Andy Weir, a piece that I found very profound, though I'm not sure why; it just resonated with me. It was a time of quiet reflection, and when we were finished, the curtains were closed and we left the chapel, serene and reflective. We had a lunch which was boisterous and in which we were able to reminisce and share a little more, though obviously our spirits were dimmed.
I think the cremation service, though not something we'd initially planned, was perfect. The memorial we had planned was to be a more lively affair, so the cremation was a chance to be a little more sad, a little more intimate, and a little more somber. And while it was very important to me that the memorial service be as positive as possible, I'm glad we took the time to be a bit more somber.
The memorial, on Saturday (March 24th), was also exactly as I'd hoped, though in a very different way. We held it in the Birmingham Museum and Art Gallery, in a beautiful, bright room called the Waterhall Room. We posted up dozens of pictures of Electra, arranged for tea, coffee and biscuits, and had a table at the front for music playing and speaking. We allowed for half an hour to an hour of milling around and chatting, then began the service to the tune of "I'd Rather Be With You" by Joshua Radin, a favourite artist of Electra and I, who we'd seen in concert twice; that particular song was "our song". I thanked everyone for coming, asked for donations in Electra's name to the hospital ward that treated her and then Paul came up to read a few poems again, one of which he'd read at the cremation, the other a childhood favourite of Electra's. After, I asked Emela and Kara to speak, and played a pre-recorded video from her other closest friend, Sara, who is on sabbatical in Australia and thus couldn't attend. Each of her friends said beautiful, moving and heartfelt things with almost no overlap; a testament to how deep and amazing a character Electra really was. The thoughts and recollections of those three were truly beautiful and captured the woman I knew so well, while revealing some aspects with which I was less familiar.
The second piece of music selected for the event was "Wildflowers" by Dolly Parton, Linda Ronstadt and Emmylou Harris, another favourite of Electra's. This was a song with which I wasn't particularly familiar, and Electra and I hadn't listened to it together. Ever since, though, I cannot stop listening to it. It's a very beautiful piece and reminds me of her, even though I'd never heard her play it. When the song concluded, I gave the eulogy I'd prepared (and read to Electra weeks before her death-one of the rare benefits of knowing the end is coming). The text is below, as I want to keep it separate. Finally, we played the third piece of music, "I'll Fly Away" by Alison Krauss and Gillian Welch; this was especially poignant as it was the piece Paul had selected to play while the curtains closed during the cremation ceremony. As a result, I've listened to it quite a bit since the memorial, but with a much more melancholy association. When this song finished, we toasted Electra with some nice single-malt scotches (her favourite spirit) and concluded the formal part of the service. This allowed some time for people to mill around some more, chat and share stories, and to focus on the wonderful woman Electra was, rather than the loss that was now so evident.
After the ceremony wrapped up, we went to a nearby bar for a few drinks, a lovely Thai restaurant for dinner, then more drinks and dancing at a club in town. The numbers declined with each step. At the ceremony, I would guess about 60-70 people were present; drinks and dinner was more like 20 and by the club we were but six. I was thrilled with how many people were able to attend, and from such disparate background: colleagues of Electra's and teachers at her favourite schools; friends of hers from her childhood and the recent past; friends of mine, some of whom hadn't even met her but wanted to show support. It was a great group, and I am immensely thankful to all who turned out for some or all of the day. It meant the world to me to see the love we had all around us.
I won't bore you with the details of drinks, dinner and dancing; suffice to say it was an exuberant and fun afternoon, evening and into night. What I will say though, is that I don't think the day could have gone any better. It was beautiful and sunny; support came from all corners and in numbers beyond my expectations; the speeches were evocative and charming and truly captured Electra's unique essence; and though very obviously tinged with sadness and loss, the attitude was one of celebration for the times we had and the woman who'd enriched our lives. Rending of clothes and hair was avoided, as was desolation and despair. It was a wonderful, warming, charming experience, and one I am sure Electra would have loved to have been a part of. Nothing can truly salve the loss of someone like Electra, but knowing she was so deeply loved, admired and respected, and saying goodbye in such a perfect way brought a smile to my weary self.
---------------
The Eulogy I wrote, and read, is as follows:
It's been nearly three weeks since Electra died, and I apologise for not writing more in that time. Dying, it turns out, comes with a lot of paperwork. Utility companies, banks and the council have to be notified, along with countless others. Funerals arrangements made and memorial services planned, belongings sorted through, and so much more. More than that, there is a general sense of listlessness that comes when the inevitable actually occurs. It's hard to get motivated to do much. And when I do, it's more about trying to get out and see friends and spend time; I have observed in myself that the busier and more social I keep myself, the better off I am in many, many ways. So the blogging has fallen by the wayside, and for that I'm sorry. Moreover, in this post, I will be relatively brief, save for the text of my eulogy, which I will include in full below. I want to discuss what we did for the memorial, and talk a little about what it meant to me.
Electra was cremated on Thursday, March 22, six days after her death. The cremation was something we hadn't initially planned to attend; we thought it was something the funeral parlour sorted out and we would simply collected the ashes. However, though this was certainly possible, a half-hour slot in the chapel was allotted, whether we used it or not, so Paul, Anastasia and I decided to do a small observance, despite the fact that we were not doing a traditional full funeral service, but instead a memorial to be held two days hence. The service was just we three plus two of Electra's closest friends, Emela and Kara. It was quiet and simple and intimate. Paul had selected a few pieces of music to the event, and had chosen a few poems about grieving and loss which had spoken to him, and he read these out loud. I said a few words about Electa and what she meant to me and why I thought she was special, and recited "The Egg" by Andy Weir, a piece that I found very profound, though I'm not sure why; it just resonated with me. It was a time of quiet reflection, and when we were finished, the curtains were closed and we left the chapel, serene and reflective. We had a lunch which was boisterous and in which we were able to reminisce and share a little more, though obviously our spirits were dimmed.
I think the cremation service, though not something we'd initially planned, was perfect. The memorial we had planned was to be a more lively affair, so the cremation was a chance to be a little more sad, a little more intimate, and a little more somber. And while it was very important to me that the memorial service be as positive as possible, I'm glad we took the time to be a bit more somber.
The memorial, on Saturday (March 24th), was also exactly as I'd hoped, though in a very different way. We held it in the Birmingham Museum and Art Gallery, in a beautiful, bright room called the Waterhall Room. We posted up dozens of pictures of Electra, arranged for tea, coffee and biscuits, and had a table at the front for music playing and speaking. We allowed for half an hour to an hour of milling around and chatting, then began the service to the tune of "I'd Rather Be With You" by Joshua Radin, a favourite artist of Electra and I, who we'd seen in concert twice; that particular song was "our song". I thanked everyone for coming, asked for donations in Electra's name to the hospital ward that treated her and then Paul came up to read a few poems again, one of which he'd read at the cremation, the other a childhood favourite of Electra's. After, I asked Emela and Kara to speak, and played a pre-recorded video from her other closest friend, Sara, who is on sabbatical in Australia and thus couldn't attend. Each of her friends said beautiful, moving and heartfelt things with almost no overlap; a testament to how deep and amazing a character Electra really was. The thoughts and recollections of those three were truly beautiful and captured the woman I knew so well, while revealing some aspects with which I was less familiar.
The second piece of music selected for the event was "Wildflowers" by Dolly Parton, Linda Ronstadt and Emmylou Harris, another favourite of Electra's. This was a song with which I wasn't particularly familiar, and Electra and I hadn't listened to it together. Ever since, though, I cannot stop listening to it. It's a very beautiful piece and reminds me of her, even though I'd never heard her play it. When the song concluded, I gave the eulogy I'd prepared (and read to Electra weeks before her death-one of the rare benefits of knowing the end is coming). The text is below, as I want to keep it separate. Finally, we played the third piece of music, "I'll Fly Away" by Alison Krauss and Gillian Welch; this was especially poignant as it was the piece Paul had selected to play while the curtains closed during the cremation ceremony. As a result, I've listened to it quite a bit since the memorial, but with a much more melancholy association. When this song finished, we toasted Electra with some nice single-malt scotches (her favourite spirit) and concluded the formal part of the service. This allowed some time for people to mill around some more, chat and share stories, and to focus on the wonderful woman Electra was, rather than the loss that was now so evident.
After the ceremony wrapped up, we went to a nearby bar for a few drinks, a lovely Thai restaurant for dinner, then more drinks and dancing at a club in town. The numbers declined with each step. At the ceremony, I would guess about 60-70 people were present; drinks and dinner was more like 20 and by the club we were but six. I was thrilled with how many people were able to attend, and from such disparate background: colleagues of Electra's and teachers at her favourite schools; friends of hers from her childhood and the recent past; friends of mine, some of whom hadn't even met her but wanted to show support. It was a great group, and I am immensely thankful to all who turned out for some or all of the day. It meant the world to me to see the love we had all around us.
I won't bore you with the details of drinks, dinner and dancing; suffice to say it was an exuberant and fun afternoon, evening and into night. What I will say though, is that I don't think the day could have gone any better. It was beautiful and sunny; support came from all corners and in numbers beyond my expectations; the speeches were evocative and charming and truly captured Electra's unique essence; and though very obviously tinged with sadness and loss, the attitude was one of celebration for the times we had and the woman who'd enriched our lives. Rending of clothes and hair was avoided, as was desolation and despair. It was a wonderful, warming, charming experience, and one I am sure Electra would have loved to have been a part of. Nothing can truly salve the loss of someone like Electra, but knowing she was so deeply loved, admired and respected, and saying goodbye in such a perfect way brought a smile to my weary self.
---------------
The Eulogy I wrote, and read, is as follows:
As most of you probably know, my name is Dan and I've been Electra's enamorado (she insisted I use that word instead of boyfriend) for the past three and a half years. We met at the University of Manchester mature and postgraduate students' society (she was mature, I was a postgrad) when she overheard me speaking Canadian. In a sea of Brits, that caught her attention-never before or since has being loud-mouthed gained me so much. I loved Electra very deeply and though our relationship had the ups and downs that any couple has, she was the most important part of my life for a long time, and I will miss her profoundly.
When confronted with the death of a loved one, especially one taken from the world so early and so unjustly, emotions can be unpredictable; you never know how you'll feel. For me, it was anger. I was angry at the unfair twists of life, and at myself for not being able to do anything. I wanted to believe in God just to be angry at Him. I wanted to be angry at medical science for being unable to fix her (and for the pain and discomfort of the treatment). There are few things in life as terrifying as realising your are completely powerless, and I wanted to lash out and strike down anything and everything. But I couldn't do that. Because it's not helpful and it's not useful-I don't believe in God and I don't believe in fate, so I've never held any illusion that life should or would adhere to any standard of fairness, as fervently as I might wish it would. But more than that, my anger wouldn't make her feel better and it wouldn't make me feel better. So instead, I chose hope; I chose optimism. And I chose that because of her; because it's what she'd want.
I used to think that it was a tragedy when two people would get together and one or both would change who they were. I saw it as a betrayal of oneself, ceding to the whims and demands of the other. It's easy to view changes to one's nature as giving up the real you. It's only when you meet someone so special that you can't help but change that you realise the reality: it's not a sacrifice. You don't change because you want to satisfy that other person, you change because their very nature makes you want to. You become a better person without even realising it, because their goodness is infectious and aspirational and the changes makes you both a better "us". And that's who Electra was to me. I tried to be a better person because it made *us* better, not because it made *me* better.
When Electra would set her mind to something, she made it hers. Changes and altered plans could stress and scare her and make her freak out for awhile, but then I would see her mentally set herself to the task and nothing could stop her. Like a switch being flipped, she would retrench and all trepidation would vanish under the wheels of her determination. And that determination and love is part of what gave me the strength to keep hope alive and to try and keep strong throughout the trying and tiring ordeals of the past ___ months. By trying to be as strong as she was, I was able to focus on what we had instead of what we lost. One of the most disheartening aspects of a sickness like this is that it progressively dashes every hope, one at a time-you hope the first rounds of chemo work. When that fails, you hope the radiation and bone marrow transplant works. Then you hope the new type of chemo works, then that you will at least get the chance to travel one more time before the end. Finally, you hope that the final days will be easy and comfortable. But the sickness takes even that away. It is desperately easy to surrender to hopelessness in this situation, but Electra never did. As she once said to me, "whatever else happens, we got one more day together today and one more night tonight. And that's something."
Electra loved easily and openly, and she did so with her whole heart (even more so after a few glasses of wine-one of my friends described her as the best drunk in the world because she would bubble and hug and exude warmth and love to friends and strangers alike). She was passionate and optimistic, pushing hard to see the best possible outcome of every situation and every person. It's hard to know how to sum up an entire life, but the best measure I know is to gauge based on the people who choose to surround and join in that life, and to give freely of their love. Electra attracted the best kind of people and the outpouring of love and admiration for her speaks volumes about the strength of her character and the greatness of her nature.
Of course, there will always be regrets. I regret the times we argued or the times our plans went awry and every time I treated her in any way worse than I should have. But more than that, I regret the unrealised dreams, the plans we had but never executed. That we never managed to live together. That we never got to adopt our puppies (Gaius and Caprica) or our kittens (Shockley and Bardeen). That we never made it to Rome, Rwanda, Brazil, Japan, Jordan, Australia or any of the other places we longed to visit (basically any country not currently involved in an active civil war). We never got to eat together at a Michelin-starred restaurant and she never got to take me to the family cottage in New York State. So I do have regrets.
But I choose to look at the positive. For more than three years, I got to experience something that seven billion people on this planet never have: life with Electra Elizabeth Risacher. I got to hug and cuddle her, to laugh with her and hold her while she cried. I got to spend time with her on four continents and in the three biggest cities in the UK (also Cardiff). I made us countless blueberry pancakes, learned to love sushi and tolerate oysters and received a solid grounding in the finer points of steak, wine and-of course-champagne. I managed to attract and keep a girl who was not only beautiful and passionate, loving and patient, but who could quote Star Trek and Battlestar Galactica with the best of them.
So, as much as my heart aches for her loss, as empty and cold as the world feels for her absence, I am blessed and fortunate because for more than three years my life was illuminated by the glow of Electra's love and that warming light makes everything better. To wrap up, I'd like to tell you a little something most people didn't know about Electra: she would talk in her sleep. Normally just gibberish and mumbles, she would sometimes pop out some full sentences; these were sometimes downright terrifying (ladies, if you want to see how high your boyfriend's heart rate can jump, wait until he's just drifting off to sleep then mumble in your sleep that you think you might be pregnant even though you have no reason to think so when you're awake). But my all-time favourite was when we were in Tunisia. As she drifted off to sleep, Electra told me that we needed to make sure we remembered to stop by the grocery store the next day to buy fireflies to light our way home. My love, wherever you are, I know you have that light and I know you'll get home safely. I love you always and your glow will always be with me.
Friday, March 16, 2012
Electra & AML: Farewell My Sweetness
(See all posts related to Electra's ongoing treatment)
I'm afraid that I have to announce this, but Electra Elizabeth Risacher passed on this morning. At approximately 5:04AM GMT, after a short time in coma, she drew her last breath. She was surrounded by her mother, father and myself and died with us holding her hands and stroking her hair. She finished her life as she wanted to: in her own bed, at home, surrounded by love and family, largely pain-free and calm. Her last truly coherent thoughts were to express her love for her family. She will be missed beyond all measure and the world is truly a darker place today for her absence, but we are glad that her passing was without excess trauma or pain and that she didn't linger long in her coma. Funeral details will follow; for now, we thank you all for your love and compassion in these difficult times.
I'm not going to go into a great amount of detail on this at the moment. My mind isn't in the right place, and I need to gather my thoughts before I can write anything of substance. But more will follow soon. I just wanted to make this announcement.
I'm afraid that I have to announce this, but Electra Elizabeth Risacher passed on this morning. At approximately 5:04AM GMT, after a short time in coma, she drew her last breath. She was surrounded by her mother, father and myself and died with us holding her hands and stroking her hair. She finished her life as she wanted to: in her own bed, at home, surrounded by love and family, largely pain-free and calm. Her last truly coherent thoughts were to express her love for her family. She will be missed beyond all measure and the world is truly a darker place today for her absence, but we are glad that her passing was without excess trauma or pain and that she didn't linger long in her coma. Funeral details will follow; for now, we thank you all for your love and compassion in these difficult times.
I'm not going to go into a great amount of detail on this at the moment. My mind isn't in the right place, and I need to gather my thoughts before I can write anything of substance. But more will follow soon. I just wanted to make this announcement.
Electra Elizabeth Risacher
October 20, 1979 - March 16, 2012
October 20, 1979 - March 16, 2012
Farewell my wonderful, beautiful sweetness. You are loved and you are missed.
Thursday, March 15, 2012
Electra & AML: The Asymptote
(See all posts related to Electra's ongoing treatment)
There is a concept in math that-though seemingly obvious-actually took millennia to invent: the concept of zero. The reason is that the difference between one and zero is unlike the difference between any other two numbers. The concept of a vacuum is so disconcerting to our minds that it actually inspired a debate amongst Greek philosophers as to whether such a concept even had merit. So, zero is kind of a big deal. The difference between something and nothing is monumental.
One of the many ways in which this comes into play is the idea of an asymptote. Without getting too math-nerdy, an asymptote is a curve which forever approaches a number (often, but not necessarily zero), but never touches it. For example, think of starting with a pile of money and cutting it in half every day. On day one, you have $100. Then $50, $25, $12.50, $6.25, etc. With each step, you get closer and closer to zero, but you will never really get there. An asymptote is a mathematical concept for a progression that always seems to be very very close to something, but never actually arrives.
Why am I talking about this? Because our asymptote is approaching zero. But ours will hit zero, unlike the math's. And I've only just realised, I was treating this illness like a true asymptote. I knew our ordeal would be long and that a decline was inevitable. I knew that we would approach death, getting closer and closer with each passing day, and near the end coming so close that the difference was barely observable. But in a very real way, I'm only just now realising that Electra is going to hit zero, and she's going to hit it soon. And I've not really realised what that means until now. Because I thought I was ready for what was to come; but really, I was only ready for the asymptote.
You see, we knew from the outset that this was going to be a long haul struggle, and it has been. Even when the outcome was certain, the hope finally dissipated, the prognosis was a slow slide into oblivion. So, you get used to the slide, you adjust to the asymptote. Things get worse, but you expect them to, and you realign your expectations accordingly. We got a wheelchair when Electra found walking tiring. We changed her meds as she reacted better or worse to her regimen. We added in meal replacements, adjusted furniture and got medical aids to accomodate her declining state. We've been carers of a sick person for over a year now and that simply became the norm. And when it got worse, that was simply another adjustment. As she got more and more tired, our norm shifted, but stayed in the same ballpark.
Now it's different. Electra is almost completely gone at this point. I don't know exactly what constitutes a coma as opposed to an ongoing and deep sleep, so I don't know if she's technically in a coma or not, but she might as well be if she isn't. She hasn't been awake in any meaningful way in the past day. She stirred at times, even spoke periodically as recently as this morning (asking for water and taking her medications). But today was the end of any responsiveness. As I write this, Electra is beside me. Her breathing is ragged and shallow, her eyes open a slit and unfocused. She is fully immobile, her limbs and extremities flaccid and motionless. She hasn't responded to being spoken to in hours. She is breathing and has a pulse, but everything that made her who she is, everything that defines the woman I fell in love with, is gone.
It turns out, the difference between something and nothing is bigger than I was ready for.
Objectively, I know that you can never be truly ready for something like this. You can prepare. You can make plans and discuss outcomes and intents. You can say "death" out loud to force yourself to accept that this is the reality. You can talk about what to do before and what to do after. You can-and I did-feel like you're ready. You're not. You can't be. Because you're only truly preparing for a further slide closer to zero and not for the drop to nothing.
We haven't yet hit zero, but it feels like we have. Electra is gone in every sense but the most fundamental biological functioning and she's not coming back. There is no hope of a last-minute turn-around, no chance that this is just another step along the decline. This is the beginning of the truest end, the end that awaits all of us. And it turns out I'm not ready for that.
I want another day, another week, another month or another year. I want to bounce up on the bed and blow a raspberry on her tummy until she convulses in laughter. I want to plan our next vacation. I want to adopt the puppies we longed for and even named (Gaius and Caprica, FYI). I want to see her giggle and clap her hands in glee like a child when she's excited about something. I want to rant to her about the latest Apple vs Microsoft development. I want to complain about the train fare and show her the new lights I affixed to my bike. I want to collect the keys to the first house we share. I want to take her for the first ride in the first car I'll buy. I want to cook her another batch of pancakes. I want our life together to truly begin. But that will never happen.
Let me use another, arguably even nerdier analogy. One of the fundamental concepts in quantum theory is the idea of the superposition. The idea says that for very small objects, we can never truly tell where they are at the same time as we can tell their momentum. The location of (for example) an electron orbiting a nucleus is defined by a 3D probability functions called a wavefunction. There is a certain chance it is in any given location, but nothing guaranteed. One of the weirder sides to this is that at any given time, the electron actually exists in all locations simultaneously. Only when its location is measured in some way does the wavefunction "collapse" and the actual location is set. The most famous thought experiment that stems from this is Shrödinger's Cat. I'll leave the details of the thought experiment to the reader, but the upshot is this: at one point, the cat is simultaneously dead and alive; only when the box is opened does the wavefunction collapse and the cat's nature become measurable.
Electra's wavefunction is collapsing. Even when her diagnosis was confirmed, I guess I instinctively felt there was a tiny sliver of hope. Technically, there is a chance, infinitesimal though it is, that an electron bound to a carbon atom in your thumb is actually located on the surface of the moon. It's unlikely but the possibility exists. Similarly, although I knew Electra's fate, a part of me clung to that most minute of hopes. That some twist would yet emerge. That as long as she was awake and conscious that it could still turn around. A zero-day cure could be found, or a dramatic reversal of fortune caused by a resurgent immune system. But moreover, just the vague, undirected hope that this wasn't it. That we'd have more time. And now, before my eyes, I can see that wavefunction collapse. There is nothing left but waiting for her breath to stop and her heart to be still. The essence of who she is has gone.
Many of the people who have written me to express support and condolences, (and I thank you all for doing so), have stated how they cannot even beging to understand how I feel. The reality is this: I can't either. I am empty and lonely and hopeless in a way I've never experienced. I feel broken and desolate. But beyond that, I just don't know. I don't think I can put a label on it beyond feeling wrong. The notion of a world without Electra in it is inconceivable, like waking up one day to find out that one plus one equals three. And yet here we are; for the first time, that world truly is upon us. I don't know how to react to a world so familiar, yet so completely alien. I'm not ready for this. I thought the asymptote would stretch on forever.
There is a concept in math that-though seemingly obvious-actually took millennia to invent: the concept of zero. The reason is that the difference between one and zero is unlike the difference between any other two numbers. The concept of a vacuum is so disconcerting to our minds that it actually inspired a debate amongst Greek philosophers as to whether such a concept even had merit. So, zero is kind of a big deal. The difference between something and nothing is monumental.
One of the many ways in which this comes into play is the idea of an asymptote. Without getting too math-nerdy, an asymptote is a curve which forever approaches a number (often, but not necessarily zero), but never touches it. For example, think of starting with a pile of money and cutting it in half every day. On day one, you have $100. Then $50, $25, $12.50, $6.25, etc. With each step, you get closer and closer to zero, but you will never really get there. An asymptote is a mathematical concept for a progression that always seems to be very very close to something, but never actually arrives.
Why am I talking about this? Because our asymptote is approaching zero. But ours will hit zero, unlike the math's. And I've only just realised, I was treating this illness like a true asymptote. I knew our ordeal would be long and that a decline was inevitable. I knew that we would approach death, getting closer and closer with each passing day, and near the end coming so close that the difference was barely observable. But in a very real way, I'm only just now realising that Electra is going to hit zero, and she's going to hit it soon. And I've not really realised what that means until now. Because I thought I was ready for what was to come; but really, I was only ready for the asymptote.
You see, we knew from the outset that this was going to be a long haul struggle, and it has been. Even when the outcome was certain, the hope finally dissipated, the prognosis was a slow slide into oblivion. So, you get used to the slide, you adjust to the asymptote. Things get worse, but you expect them to, and you realign your expectations accordingly. We got a wheelchair when Electra found walking tiring. We changed her meds as she reacted better or worse to her regimen. We added in meal replacements, adjusted furniture and got medical aids to accomodate her declining state. We've been carers of a sick person for over a year now and that simply became the norm. And when it got worse, that was simply another adjustment. As she got more and more tired, our norm shifted, but stayed in the same ballpark.
Now it's different. Electra is almost completely gone at this point. I don't know exactly what constitutes a coma as opposed to an ongoing and deep sleep, so I don't know if she's technically in a coma or not, but she might as well be if she isn't. She hasn't been awake in any meaningful way in the past day. She stirred at times, even spoke periodically as recently as this morning (asking for water and taking her medications). But today was the end of any responsiveness. As I write this, Electra is beside me. Her breathing is ragged and shallow, her eyes open a slit and unfocused. She is fully immobile, her limbs and extremities flaccid and motionless. She hasn't responded to being spoken to in hours. She is breathing and has a pulse, but everything that made her who she is, everything that defines the woman I fell in love with, is gone.
It turns out, the difference between something and nothing is bigger than I was ready for.
Objectively, I know that you can never be truly ready for something like this. You can prepare. You can make plans and discuss outcomes and intents. You can say "death" out loud to force yourself to accept that this is the reality. You can talk about what to do before and what to do after. You can-and I did-feel like you're ready. You're not. You can't be. Because you're only truly preparing for a further slide closer to zero and not for the drop to nothing.
We haven't yet hit zero, but it feels like we have. Electra is gone in every sense but the most fundamental biological functioning and she's not coming back. There is no hope of a last-minute turn-around, no chance that this is just another step along the decline. This is the beginning of the truest end, the end that awaits all of us. And it turns out I'm not ready for that.
I want another day, another week, another month or another year. I want to bounce up on the bed and blow a raspberry on her tummy until she convulses in laughter. I want to plan our next vacation. I want to adopt the puppies we longed for and even named (Gaius and Caprica, FYI). I want to see her giggle and clap her hands in glee like a child when she's excited about something. I want to rant to her about the latest Apple vs Microsoft development. I want to complain about the train fare and show her the new lights I affixed to my bike. I want to collect the keys to the first house we share. I want to take her for the first ride in the first car I'll buy. I want to cook her another batch of pancakes. I want our life together to truly begin. But that will never happen.
Let me use another, arguably even nerdier analogy. One of the fundamental concepts in quantum theory is the idea of the superposition. The idea says that for very small objects, we can never truly tell where they are at the same time as we can tell their momentum. The location of (for example) an electron orbiting a nucleus is defined by a 3D probability functions called a wavefunction. There is a certain chance it is in any given location, but nothing guaranteed. One of the weirder sides to this is that at any given time, the electron actually exists in all locations simultaneously. Only when its location is measured in some way does the wavefunction "collapse" and the actual location is set. The most famous thought experiment that stems from this is Shrödinger's Cat. I'll leave the details of the thought experiment to the reader, but the upshot is this: at one point, the cat is simultaneously dead and alive; only when the box is opened does the wavefunction collapse and the cat's nature become measurable.
Electra's wavefunction is collapsing. Even when her diagnosis was confirmed, I guess I instinctively felt there was a tiny sliver of hope. Technically, there is a chance, infinitesimal though it is, that an electron bound to a carbon atom in your thumb is actually located on the surface of the moon. It's unlikely but the possibility exists. Similarly, although I knew Electra's fate, a part of me clung to that most minute of hopes. That some twist would yet emerge. That as long as she was awake and conscious that it could still turn around. A zero-day cure could be found, or a dramatic reversal of fortune caused by a resurgent immune system. But moreover, just the vague, undirected hope that this wasn't it. That we'd have more time. And now, before my eyes, I can see that wavefunction collapse. There is nothing left but waiting for her breath to stop and her heart to be still. The essence of who she is has gone.
Many of the people who have written me to express support and condolences, (and I thank you all for doing so), have stated how they cannot even beging to understand how I feel. The reality is this: I can't either. I am empty and lonely and hopeless in a way I've never experienced. I feel broken and desolate. But beyond that, I just don't know. I don't think I can put a label on it beyond feeling wrong. The notion of a world without Electra in it is inconceivable, like waking up one day to find out that one plus one equals three. And yet here we are; for the first time, that world truly is upon us. I don't know how to react to a world so familiar, yet so completely alien. I'm not ready for this. I thought the asymptote would stretch on forever.
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