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.

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:


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.