Electra & AML: One Year On

(See all posts related to Electra's ongoing treatment)

One year ago today, the world darkened a little bit as one of its beloved daughters was taken away. One year ago today, a final breath was drawn, final goodbyes were said and the end was reached for someone who should've had decades left before that moment. One year ago today friends, family and a boyfriend felt a profound loss. One year ago today, Electra quietly slipped away.

It has been a tumultuous year since then, as you can imagine. This experience has affected more people than I could count and in no doubt very different ways, but I hope that anyone reading this will excuse me for focusing on myself with this post; though I have some insight into how others are thinking and dealing with this loss, I can only truly speak for myself. And as this blog has been-to various extents-a form of catharsis for me, I want to reflect on that here.

The past year for me has been one of growth. I have been through myriad emotions and coping mechanisms: I was angry, I was depressed, I drank too much and flitted between partying and wallowing. I saw a therapist and talked with friends. I ate and drank and worked out. I bought crap I didn't need and spent many hours just thinking and reflecting, while spending an equal number just denying to myself and others that there was anything amiss. But I also loved and revelled. I spent time with friends and colleagues and started dating again. I reintegrated myself with London and its unique blend of vigor, frenetic energy and artistic and cultural variety. I started a new role at work, travelled to the Ukraine and started looking at where to travel to next.

And you know what? After 15 months of watching a loved one die; after months of struggling to come to terms with the unfairness of life and death; after the most trying and deflating and punishing year of my life, I'm actually in a pretty great place. I'm happy with where I am and where I'm going. I genuinely feel like I've come out the other side as a better person and am ready to take on life once again.

I did not get here alone. I have around me the best friends and family anyone could dream of. The outpouring of love and compassion I have felt is unparalleled. I have never wanted for a sympathetic ear or a distracting night at the pub (pro-tip: for all the complaints I periodically level at the British, my goodness do they get the pub right as a concept). I know that for much of this time, I wasn't a great friend: whether I was distraught or angry (at myself, the world or others) or just emotionally unavailable, I know that I wasn't always the best companion and for that I apologise. But the support never wavered for an instant. I got love and tenderness at the right times and a kick in the ass when I needed it. And I love you all for that.

So, where am I now? Well, I'm at the threshold to whatever comes next and-for a change-I'm pretty damn enthusiastic, optimistic and happy about that. I love where I live, I am busy pretty much all the time, I have no end of little projects I want to work on and things I want to do. But more than that, for possibly the first time in my life, I feel like I know what I want: I want to feel passion. I want to be excited, about the people in my life, about my job (ah, to dream the dream), about where I'm going next and what I'm doing next. That element has been missing for some time, but it's being rekindled. And for the first time, I actually feel pretty confident that I can achieve this, can get to where I want to be. I know it seems obvious, but to me that's huge. Paths feel open to me that I wouldn't have dreamed of before, and I finally feel like I know my priorities.

Electra is gone but never forgotten. She changed my life and my person for the better and I will always be thankful for that. But one year on, my life continues. I will pay her the best tribute I can imagine: to live my life fully and openly. To dream and strive and challenge myself. To work to better myself and my world and grasp at any opportunity I can. To fall in love again and make a meaningful life. Electra loved openly and wholeheartedly and it would do her memory a great disservice to not embrace that joie-de-vivre with my whole being. She was as interested in the world and its plethora of secrets, intricacies and contradictions as I am and this will be her legacy to me: a drive to always explore and to believe that I can. One of my favourite comic strips of all time is Calvin and Hobbes, which ended on one of the most beautiful strips I've ever seen:

One year ago today, Electra's last breath left her body and she lay still forever. But she has only died once. Banksy, the British street artist once said that you die twice: once when you stop breathing and once when someone says your name for the last time. I like that and by that measure, Electra still lives, as the Hobbes to my Calvin. She showed me the magic in the world, and will be with me as I explore it.

Electra & AML: The Path To Normalcy

(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.

Electra & AML: The Eye of the Storm

(See all posts related to Electra's ongoing treatment)

This week has been one of respite, a nice change from the tedium, monotony and frustration of the hospital life: since last Friday (January 28th), Electra has been home from the hospital. Her neutrophils are up (as I mentioned earlier, these are the most common type of white blood cell and the chief weapon in the body's immune system). The measured level was sufficiently high that the hospital decided they'd had enough of her and kicked her out for some much-needed R&R (I may be paraphrasing the reasoning a little).

Unfortunately, due to a series of prior commitments I'd made when we'd assumed she'd be in the hospital much longer, I was confined to London for the weekend and Monday (I had an immovable presentation on Monday morning). So to my chagrin, I would miss the first weekend that Electra was to spend in comparative freedom, a rare gift in these times. We had various things to look forward to in home time-pancakes, sleeping in and movie nights principle amongst them. But alas, it was not to be. The schedule, as dictated by the hospital, was a blood test Monday, followed by a bone marrow test Tuesday and readmission to the hospital Thursday.

Monday went comparatively as planned, save for a return of the sore throat which originally triggered the tests leading to Electra's diagnosis. However, an examination showed this as nothing to be terribly worried about, and indeed it has faded since then. The car ride to and from the hospital drained Electra a lot, and she cancelled her planned evening with friends on Monday. That same day, I left directly from work and drove back up to Worcestershire, not the safest drive I've ever made as a result of my fatigue (another rant for another day), but I made it.

On Tuesday, Electra's imagination got the better of her. See, the first bone marrow test was intensely unpleasant for her, hardly surprising since it involves a large-gauge needle poking a hole in the back of one's hip bones. The problem is that while the test really is unpleasant, the thought of that unpleasantness can be daunting, and Electra found it difficult to go through a second time and asked the doctor if it were possible to be sedated. It was, but it meant she'd have to come back Thursday. This in turn meant she wouldn't be readmitted until Monday. When faced with the choice of pain and fear or free sedatives and another weekend at home (with me this time!), the choice was pretty straightforward. Even when I'm being hardest on myself, I still generally believe I'm preferable to a giant hip needle.

Yesterday (Wednesday) was a lovely evening out with four of Electra's friends. I haven't asked them for permission to use their names so they'll stay anonymous for not, but it was two couples, Electra's father and Electra & I. We went to a lovely little pub up the road from Electra's place, and had a very nice evening. It was also Electra's first time wearing the wig she got on the NHS scheme. It's very similar to her natural colour, though perhaps a touch more red in the highlights. It's semi-wavy and just to the shoulder. She looks good in it, and you wouldn't know it was a wig except that she hasn't figured out how to scratch her head without shifting around dramatically.

Today, then, was the revised date for the bone marrow biopsy. It all went well except that the sedatives didn't really kick in until about half an hour after the procedure. So Electra was lucid and somewhat pained by the procedure then loopy and happy and fun after the fact. Electra after sedation is similar to Electra after a few G&T's: friendly, loving, excited to see everyone, waving to passersby, and with a tendency to ramble on a bit, specifically about people and things she loves. Very endearing across the board.

Weeks like this are vital to the healing process, in my feeling. When dealing with something like cancer, there is a tendency for it to overwhelm every aspect of one's life. As a carer, I find this tough to escape: I take time for myself and spend some time just living and not thinking about cancer to whatever extent I can. But my thoughts wander as thoughts so often do. And they often drift back. In some ways, it's like when I was working on my Ph.D.; even when I took a night off, the shadow of my thesis loomed large, forever in the periphery of whatever I did. Some of this comes from wanting to keep people updated, and people checking in. And I really love that people care enough to want updates and don't ever want anyone to stop asking, but of course it makes forgetting about cancer-even for a day-difficult. Again, this is like the inevitable question I got during my postgrad ("How's the research/thesis going?" followed by the more-inevitable answer: "Rubbish. More beer please!").

So that makes this limited calm-in-between-storms all the more important. Because the shadow looms as dark and large as ever, but for awhile, we get to turn on an extra light or two and banish the dusk to the very corners of our lives. We get to watch mediocre TV, eat real meals, fall asleep and wake up together. And that break, that evanescent suspension of disbelief that life is as it was two months ago, helps provide the fortitude to persevere through the bad times. It is the security blanket of hope and reassurance that this, too, will end and normalcy and health will be restored. I only wish we had longer before the next onslaught.

On a more "meta" note, I'm hoping to slightly shift the way I make these posts. The dilemma of the lengthier posts such as this one is that writing them takes sufficiently long that I tend to put it off. Which of course gives me more to report one. So my new plan is to post more frequently, but shorter. So please stay tuned, and I'll try to fulfil that promise.

39 ways to live your life in an airy-fairy fantasy world

I just read an article called "39 Ways to Live, and Not Merely Exist" by someone named Leo Babauta, and while it seems on the surface to be life-affirming and generally good, it bothered me more and more as I read it. Not because some of the suggestions aren't good, but because many of them are airy-fairy, hippie nonsense that is great, unless you live in the real world. Furthermore, they assert a single ideal when it comes to what one "should do"; an ideal I feel is clichéd and lacking in both flexibility and understanding. So, consider this a point-by-point rebuttal and critique.

1. Love. OK, a good start. Being able to love, and doing so wherever possible, is great. I also agree that this love can be for family or close friends, as well as romantic love.
2. Get outside. Again, broadly speaking a good idea. Nature is good, and balancing one's indoor time with outdoor time is a good thing, by and large. I'd wait until it's nice, though. Rain, sleet etc. suck and do not engender an appreciation for the outdoors.
3. Savor food. Food is great, but I've always taken offense to the idea that it must be consumed slowly and with excessive deliberation to be enjoyed. A fine dark chocolate truffle should be, yes. But a plate full of chicken wings deserves to be devoured as the velociraptors of yore devoured their hot-and-spicy chicken wings: quickly and messily. That is a pleasure in and of itself.
4. Create a morning ritual. Morning sucks. It's tiring and mean. Coffee also sucks, but I understand that's a minority view. Either way, talking to myself and meditating will never make morning suck any less. It's to be gotten over with. Period. (mom, please stop reading this point NOW). Morning sex is good though, and can improve an otherwise-crappy time.
5. Take chances. Spot on, something I've written about before.
6. Follow excitement. OK, this is the first one that's nice in principle, but simply not realistic. Eventually, you have to actually get stuff done. Excitement is great but mundane tasks exist for a reason. You can't live your entire life on safari. It just doesn't happen.
7. Find your passion. Yeah, this one's good too. It's on my to-do list.
8. Get out of your cubicle. Good God, I hope I don't spend my career in a cubicle. But if I do, so be it. There's more to life than work, and if working in a cubicle gives me access to the things I want in life, that's a reasonable trade-off.
9. Turn off the TV. There is some good stuff on TV, there really is. There is eye-opening, informative programming, there is uplifting, entertaining programming, and there is quality programming that's great for just turning your brain off for a limited period of time. There is, of course, a giant mountain of crap as well, and too much TV is bad. But to paint all of television with the same brush is simplistic and disingenuous.
10. Pull away from the internet. First off, this guy really thinks his article is the only good thing on the 'net? Second of all, kiss my ass. There's a lot of good stuff on the net, too, and you only learn to sift the good from the bad through patience and experience.
11. Travel. Travel is great, and most people love doing it and should do so to the extent they can. But become a freelancer, checking your email weekly? FANTASY LAND! Some jobs require physical presence, and they often pay enough for you to be able to afford to, you know, travel. Airplanes aren't free. Also, if you do travel, I'd highly recommend straying outside the most-touristy areas. The Eiffel Tower is fun and all, but there's more to France than that.
    
12. Rediscover what's important. If you can reduce your life to a list of 4 or 5 keys things, you're a cloistered Buddhist monk and aren't reading this blog posting.
13. Eliminate everything else. See above.
14. Exercise. Yes, but do it because being a lard-ass is nasty. I was too fat for too much of my life. I've exercised extensively and regularly for two years now and I still hate just about every minute of it. So exercise, but do it to be healthier-up to 95% of American adults are overweight or obese. Be in the good 5%.
15. Be positive. Yeah, because bottling up your negativity never has consequences! Look, life isn't always great-sometimes a little negativity is warranted. Just don't let it rule you.
16. Open your heart. Tough thing to do, but worth it.
17. Kiss in the rain. Passion is good, but anything can become routine. The key is to let the inner romantic have his moment when it's spontaneous and natural, not all the time. Also, don't pick wildflowers, pick a potato!
18. Face your fears. Yup, good advice, and again, something I've written about before.
19. When you suffer, suffer. This kind of contradicts his #15, but aligns nicely with my critique thereof.
20. Slow down. No. The slower you go, the less you can do. And don't give me that "you enjoy it more" or "take time to stop and smell the roses" garbage. There's stuff to be done. Lots of it. The world, it turns out, is quite large. You want to travel? Hang out with friends? Watch the good TV shows? You gotta cram that into the 16 hours a day you're awake. And anyone who walks slowly on a sidewalk, obstructing those of us with better places to be deserves being pushed in front of a bus.
21. Touch humanity. I don't need to talk to a smelly homeless dude to know his life sucks, I get it. Getting out of your comfort zone is a great experience, but to blithely say that everyone needs to experiences destitution first-hand is trite. Furthermore, you can cram your simplistic Buddhism-101 anti-materialism up your ass; how dare you tell me how to enjoy my life? I should feel guilty because I actually like the idea of watching movies (a pastime I do enjoy) on a 72" screen with 7.2 digital surround sound? Just because you can find enjoyment without material things doesn't mean there's anything intrinsically wrong with enjoying pastimes predicated on material possessions. Everyone likes different things and no one person can be the arbiter of what anyone else should like.
22. Volunteer. Volunteering is good, but there are many ways to do it. The sick and dying are depressing and often icky. Not my cup of tea.
23. Play with children. Yeah, just hang outside playgrounds and ask the wee kiddies to come play with you, I don't see how that could go wrong. Also, kids might be entertaining in small doses, but they're frustrating and draining on an ongoing basis.
24. Talk to old people. Again, a broad statement. Some old people are interesting and have great stories. But many are senile, forgetful and incontinent. Either way, most of the elderly are at least a little bit creepy.
25. Learn new skills. I agree with this one, but try not to lose the old skills, eh?
26. Find spirituality. This, to me, is another classic example of assuming everyone is the same. Spirituality can be a great thing for some, but it's not for everyone. Some of us actually prefer proof and demonstrable, tangible credibility in the things in which we choose to believe.
27. Take mini-retirements. Another fantasy-land invention. Every year you take off of work sets your career back by 18-24 months. Therefore, if you take your "mini-retirements" regularly, you'll just stall your career and once again, be unable to afford travel. And that whole "sell your house, live simply" crap? Yeah, selling a house takes like 2-12 months easily, depending on the market. And having shelter is a good thing. Living in tents 7 days a week gets old after awhile.
28. Do nothing. Good advice, doing absolutely nothing every once and awhile is great for recharging the batteries. Although, again, he's contradicting his anti-TV statements here, he's agreeing with my opinion, so good for him.
29. Stop playing video games. Again, the arrogance of telling me what I should and should not enjoy! I personally find moderated video game play to be an intellectual stimulant and a relaxing experience. I guess that makes me a slovenly wastrel. Oh no, wait, it makes him a dick for judging me.
30. Watch sunsets, daily. First of all, overly-sappy and romantic. Second of all, some of us live in Manchester, where the "sun" is a myth at most. Finally, while I do love a good sunset, daily is a little overkill-it becomes a waste of time, and ruins the romance by converting it into standard routine.
31. Stop reading magazines. Again, not all magazines are bad. Certainly, very few are as bad as the trashy romance novels he suggests as an alternative. Magazines run the gamut from vacuous celebrity-gossip to insightful political analysis, and to blacklist them as a hole is to cut yourself off from one of the most astute views of the society in which you live.
32. Break out from ruts. I agree with this one, though he once again contradicts himself (by saying you should change the morning routine he suggested you establish way back in #4).
33. Stop watching the news. Just because something is depressing, doesn't mean you have the right to be ignorant. The knowledge of the world around you can be vital in defining your place in the world, and knowing the day's events can lend you a depth and breadth of understanding that solely getting tidbits from your mother can never bring.
34. Laugh until you cry. Laughing is great, and releases endorphins. But rolling on the ground laughing just makes me want to kick you in the ribs to see how funny you find that. I'm guessing, not very.
35. Lose control. I'd modify this slightly and say exhibit control, but accept the limits. You can never control anyone else completely, and your self-control will forever be tested. Further, I agree that it's good to let go sometimes (beer helps with this).
36. Cry. In Deep Thoughts By Jack Handey, he says "It takes a big man to cry, but it takes a bigger man to laugh at that man." I think that speaks for itself.
37. Make an awesome dessert. Amend that statement to "Make or buy an awesome dessert" and you've got my vote. Personally, I like to go for the most chocolatey substance I can lay hands on, but to each their own.
38. Try something new, every week. Good advice, albeit a little impractical.
39. Be in the moment. Don't overplan, but a failure to plan simply results in you getting blindsided by something you should be able to deal with adequately. If you fail to plan, you plan to fail. People often make the mistake of assuming that planning for something makes you inflexible; this is wrong-it simply gives you a framework in which to operate. Furthermore, while unanticipated problems will always surface, so will concerns you should be able to anticipate for, and these can (and should) be mitigated.

I don't think the article is bad per se. I just thinks it's naive and simplistic. I don't think it's fair to paint everyone with the same brush, something I feel the author does quite a bit. There are some great bits of advice there, but they must be tempered with a dose of pragmatism. Put another way, idealism is wonderful, but should never compromise realism.