Day 728: Recovery: Still [BLEEPING] hard: Opiates, Withdrawal, etc.

There's been lots of good updates for me, recently. I often feel motivated to take charge of my life again, something that was taken away from me for a long time. But also I need to be real here. Recovery takes a freaking long ass time and I am so sick of it. For godssakes I was SICK for a shorter amount of time than it's taking to recover. It's nuts. I feel like I should have bounced back by now. But I'm just not. there. yet. omg.

My mom told me a few mornings ago over the phone: I may not be fighting for my life anymore- as in, trying to not die, which I was for a very long time. But that I'm still fighting for my Life; to get my Life back, to make my Life worth living, to convince the demons who reside in me that I am worth keeping around, that Life hasn't passed me by, that I'm not years behind and stuck in a rut of shit.

Some days are really good. I feel good, I accomplish things and feel like I'm making progress. Lots of people ask me how I'm doing health-wise. And I just don't know what to say right now. Usually I feel obligated to say I'm doing well- because I don't have cancer any more. Praise Whomever. Community swells at trauma; in a beautiful way, a stunning way. Just a few nights ago I did an impromptu reading of a portion of this blog- the prose poem stream of consciousness thing that I wrote the night after the Bash Leukemia Bash in 2013. That night blew my mind into a trance-state of being, and what I wrote, I wrote with a constant flow, I did not edit and did not re-read it until the next morning. The evening was... beyond words, but I tried in the only way I knew how. I wanted to capture it, bottle it up, for days like this.

But the truth is, it's difficult, impossible even, for a community to stay that close to you for as long as this is taking, and/or for them to know that the recovery is longer than you would think, and that recovery is sometimes even harder than dealing with the daily threat between life and death. Because when you're there in the thick of it, you are just making it by, and there's not a ton of time in your energy-store to spend in darkness. It was too fast and you barely kept up. At least, that was my experience. I needed to be positive and make jokes and dance as much as possible. It didn't feel like an option to feel sorry for myself. I can't really explain myself in those initial months- it's just how I had to deal with these life-changing events. I'm not saying this is the best way to cope, it was just my way. I had my moments of terror, even then, of course- Death was sitting next to me, and I couldn't ignore him, especially in my month-long stays in the White Box of Doom.

This week has been a hard one. I've attempted and failed to get myself to two different doctor appointments this week. I went on a long walk with the sweet dog I'm watching, and it did help a bit. But the symptoms I am dealing with these days are sometimes more than I feel like I can take. These days, I wake up starting around 3am (or earlier) with extreme muscle spasms in my legs. I have to quickly get out of my bed as fast I can to try to stand on my crippling legs and feet, trying to just breathe, waiting until the spasm is over; somewhere between 30 seconds to a minute, sometimes longer. If that doesn't sound long to you, it is when it's excruciating pain you're dealing with. It is exhausting. I am so tired because my sleep is so disturbed, and I'm angry that my body is doing this to me. The doctors can't figure out why it's happening. GvHD? Malnutrition? Dehydration? Some other unknown cause? All of the above? I usually try and pull myself back into my bed with just my (tiny) arms, trying to not use my leg muscles so I don't trigger another one. And then cycle starts again, somewhere between 30 min to an hour later.  And I often just cry, head flat on the mattress trying to breathe, in my annoying hot-headed-burning-eyes tear-less way, until I can crawl back into my bed. These spasms are not messing around. It's truly grueling. I am totally at the mercy of these things. I'm confused that this can even happen when I have no muscles?! How can my non-existent muscles tighten so much it feels like my bones are breaking? And it happens in my hands, too-- usually if I've been using them during the day (oh, why not just NOT USE MY HANDS, HUH?); and sometimes it looks weirdo, hands contorting at weird angles and pain pain pain. But sometimes it looks like nothing is happening, except for my veins bulging, but the inside of my hand feels like the bones are being crushed. Cue crying from pain. And sometimes I just cry in my bed, at all hours. It makes my days short because I sometimes can't get out of bed until the afternoon. And it makes me feel just like a pill, instead of making me better, I'm making me ill. (thx, P!ink for your poignant lyrics)

This is not a great thing to report on, I'm not thrilled to be writing that I cry alone in my bed almost every day. It makes me feel like a failure, to be literally under two weeks away from two years since transplant, and sometimes I feel so stuck, so at the mercy of my body that just seems like it wants to hurt me, still.

I also have been dealing with something else that isn't pretty at all, but is extremely real and I think it's important to talk about. I guess. Oh God, okay.  I am addicted to opiates. I am addicted to morphine. And I f*cking hate it. I hate it so much. I don't want to be addicted to anything, never have had any interest in drugs, but I now see how any person, no matter who, can be addicted to drugs; so fast, so under the radar until it's too late. It's not the kind of addiction where I am craving it because I want it. It's the kind of addiction where if I miss a dose, I am in hell. I've been reading up on opiate addiction and withdrawal, and the symptoms vary from person to person, but my big ones are: terrible body aches, restlessness, the confusing feeling of being cold and hot at the same time, and an over all general SHITTY feeling that is hard to describe. Your body just...hurts. It's usually the worst in the morning (yay mornings forever) and at night (yay in-between those two times! Which isn't very long considering I still need a million hours of sleep and sometimes have to force myself to get out of bed at noon). Sometimes, I know that I just need to take my medicine and I'll feel better, but the aches and restlessness have me writhing in my bed for sometimes hours. I've also experienced a severe loss of appetite, and have lost so much weight that I am basically a skeleton. I am trying to gain weight, but it is harder than I could have ever imagined. It's difficult to watch my body whither away, again.

It's frustrating to have this addiction. I was first made aware of it last November, when I went to a DFCI Survivorship Clinic, where you get other check-ups besides just cancer ones: dermatology, dentist, eye exams, nutrition, etc. I forget which appointment it was in, but we were going through the (LONG) list of medications that I was taking (and still taking now...fix it jesus), and when we came to the MS Contin (12 hour slow-release morphine), the doctor said something like: "Wait, you're still on morphine? Why are you still on morphine?" ...It put me on the defensive, like, it was not right to still be on it and also my fault that I was still taking it, and I had to say something like, "I'm still really dealing with a lot of bone pain"--which was true, but it started me thinking...

Whenever I missed a dose of the morphine (which was fairly often because the paper script- which you need a physical copy of for controlled narcotics-was always sent to the wrong address, sent late, or WHATEVER but this happened a lot. ugh.) I would go through a mini hell: sometimes the shakes, body aches, overwhelming sense of shitty, hot/cold, quick deep hole of depression and fatigue. I started to wonder if the symptoms I was experiencing was the pain I was treating with the meds, or if it was just withdrawal from the meds. It was hard to tell, but I started to feel like it was the latter. And this was scary.

I hate to use the word negligence, because my doctors have done an amazing job. I'm not dead. As my doctor reminded me recently, shaking his head at my now day-to-day symptoms--which he (depressingly) seemed to deem unworthy of his time to listen to because: "Well, you don't have cancer right now, and CMML is a very hard cancer to treat. We're lucky that the treatment seems to be working so far. It hasn't come back yet." ...UM CUE MINI FREAK-OUT. Hasn't come back YET? He kept saying over and over CMML is a very very hard cancer to treat...UM "seems to be working?" "SO FAR?!?" "It hasn't come back YET??!?!??" I was like, are you kidding me??! I thought we went into this confidently! I felt betrayed and suddenly the terror crept up again. What if it comes back. He seemed to suggest the likelihood of its returning. I had a bad day, that day, too- after that. But this is besides my point here. Basically, I've decided that I can't spend my time fearing that cancer will come back. I just can't. Because my life would be consumed and I don't want that consuming my life.

Back from the digression: I don't want to use the word negligence, because it seems really negative. But the honest truth is, NO ONE was monitoring me and my meds (read: addictive drug-use). I am peeved that I had to be the one to sheepishly bring it up finally in a check up "Uhh, um. I think, maybe, that I am experiencing...withdrawal symptoms instead of pain symptoms when I miss a dose of the morphine." And my nurse's response was "okay, let's figure it out" which was great but WHY DID I HAVE TO BRING IT UP? Why was I the one to be like.... ok now after taking morphine twice a day for two years, maybe I'M ADDICTED AH PLEASE HELP. I am not a person with an addictive personality, and I have a pretty strong will. So I think I will be able to get off of this drug. But it was recently brought to my attention that the US, and Massachusetts (IN PARTICULAR?!?) is dealing with opiate addictions. I can't help but make a very uneducated guess at the correlation of the healthcare hub of MA and the hub of OPIATE ADDICTION. Seriously, guys, if I wanted to, I could just keep asking for refills and I could get into this really bad. I'm talking, serious. I could get into a real drug habit, which is NOT something I want to do, but I have immense empathy for people who do. Especially when it starts out as a prescription for pain for one thing or another. And the longer you take an opiate, the more you require because your body becomes used to it. This leads to Heroin, guys, the big papa opiate. I see now so much more clearly than I ever could have before: drug addiction is 1) no joke 2) way too easy 3) can happen to ANYONE. Me, Bekah Jordan, addicted to opiates. I am NOT the "type" of person to be into drugs. But it happened to me. There is no "type" of person. It can happen to anyone.

And it pisses me off that it happened to me, and that it happens to a lot of people. A lot of people may not be as aware, or just fall into it-- and before you know it, they've lost their family, all their friends, living on the streets doing heroin. It's NOT a "type" of person. I can't stress that enough. And I think a lot of leaders look at the "opiate problem" and the "homeless problem" and are scratching their heads. I'm like, DUH. I could be one of them, if I let myself. I don't want to let myself, but maybe I have a stronger will-power about this than some other people. The bottom line is (in my opinion) is that doctors should be MONITORING their patients, especially those who are taking narcotics regularly. MAKE SURE THEY ARE SAFE. MAKE SURE THEY DON'T FALL OFF A NARCOTIC CLIFF.

I can't say that my eventual addiction to morphine was total negligence of my medical team. I think it is often hard (for anyone, professionals included) to determine if pain is pain or if pain is withdrawal. But they should be checking up on it, and patients shouldn't have to be the ones after two years to be like...um, I think I'm addicted? It's scary. God I hate it.

In sort-of goodish news, I've recently met with a nutritionist and a doctor in palliative care (pain/symptom management), and we've come up with some plans: to get my appetite and weight back, and to slowly get off morphine. I just have to put it into practice, which I am starting to do. So, hurrah.

To add to this hilarious daily party, I'm also dealing with Fun Fun Anxiety. Haven't heard of Fun Fun Anxiety? Oh, it's a real blast. As in, it hits you so fast that you are blasted into hyperventilation or crippling despair. I really haven't ever dealt with anxiety much before my diagnosis; and even for a while now. But it's creeping up again, for some reason; and as always, when you least expect it. Something triggers it and off we go to the races. Sometimes it's hyperventilating and overwhelming fear that I can't keep my head above. Sometimes it's triggered and I shut down like an unplugged machine, into a paralysis and mental depression that takes over whatever I was just doing. I sink down pretty fast. Some traumatic things have happened to me and to people I care about recently, and I know that is contributing.

I don't know exactly how to wrap this one up, guys. Just layin it own like it is. Terror.
I'm letting it happen to me, while also trying to see the beauty here too--in between episodes of crippling pain or anxiety or GD withdrawal symptoms. Good coffee. It still being shorts weather in September. Wanting to bake again, and doing it. The sweet dog who is my constant companion these days, who sneezes a lot. Hanging out with the sweetest five-year-old hilarious nephew you've ever seen and reading books about dinosaurs outside the library. The skylights above me right now, displaying the clear blue sky. Scarf dancing with my little kids in theatre class. New socks. My hair can make a tiny tiny ponytail.

love. and love and love and love and AHH,
B

Day 722: Anniversaries

Today holds a lot of things inside it. I've written about it before: anniversaries can be so multi-faceted. It's the second cooled down day that we've had in a row, and I'm drinking tea and wearing my coat in the house so it must mean Autumn has arrived: as New England seasons usually do, shocking us after the intense heat wave of last week. Fall winds are whispering at our doorstep, getting ready to color the trees and cover the ground with crunchy autumnal love. I am thinking of so many things of the past. Nostalgia hovers in the changing of seasons, I think; especially this one, Summer to Fall, every year.

Today, fourteen years ago, the Twin Towers, a plane in DC and a plane in PA fell from the sky, and our nation felt the heaviness of it all- the heaviness of terror, and the horrible evil that this world harbors in dark corners. Somehow we are now here, slightly older, remembering that day with a sadness that somehow seems to refresh itself with grief every year. Yes, let's never forget. It also brings to my mind the atrocities that take place to this magnitude every day, all over the globe, even as I write this. Let's never forget that, either. It can be depressing, to think of the world this way, to see it through the eyes of its atrocities. But in order to carry on in my life and not be paralyzed, I try to choose to see the world through a different lens.

Today, 67 years ago, Isabel Sadler married her high-school sweetheart, Louis Plavidal and continued a family tree that eventually grew to where I am now. This stud and stunning lady were my fearless, loving, hilarious, light-up-the-room grandparents, each of them fulfilling those words in their own way.

My Grandad, Lou, was a funny, well/loudly dressed party-starter; a tennis-playing, go-cart-racing, sail-boat-wielding, bird-hunting, model-airplane-building, dog-loving, DIY-fix-it and chili-contest-contestant, with a sweet tooth that would make dentists around the world run and hide. His famous undoing were jellybeans. As kids, he would sneak us tiny colorful gumballs from his gumball machine that looked like an old-timey gasoline dispenser. They were always hard as rocks, but we loved them anyway. He brought out and put together the intensely detailed and delicate train set at Christmas-time that would run around the tree, and was well known for re-gifting things he'd been given from work-related clients etc (He worked for General Electric). Was this a predisposition from being a child of the Great Depression? Was it in jest? Hard to tell. We laugh about it still. We always (and still to this day) have a Christmas puzzle that the family works on together, and he created a mode of puzzle-ing called "Touchy-Move-y" which was instated towards the end of the puzzle, when there were only a handful of pieces left, and you weren't allowed to touch a piece unless you knew exactly where it went. Now picture a bunch of people hovered over a game table with their hands behind their backs... He was also well known for having approximately 900 projects going at the same time, most of them never fully finished. He loved boats and cars, and had his share of fixer-uppers, including a 1965 two-seater Lotus with a loud engine that he would take turns driving (flying) us three grand-kids around the neighborhood, probably to Granna's somewhat dismay at the speed.

He had a billion lovable disaster stories ('lovable' and funny always later, after-the-fact of course- though he probably always found the humor while they were happening...everyone else involved probably didn't until much, much later), always told and re-told at every Thanksgiving, especially after a "drinky-poo" (CC Manhattan on the Rocks- coincidentally my father's drink as well). Most involve trailers and their untimely unhitching, tires coming off and rolling past them on the highway, and canoes wrapping around rocks in rapid waters. He was an adventurer for sure. Their house was filled with his duck-decoys, and always smelled of old magazines and books. He had a great laugh, and when he really laughed: with eyes squeezed shut in a great guffaw, maybe a tear peeking out of the side of an eye...I can hear it right now.

My Granna, Isabel, was a gentle and kind, often quieter and observant counterpart to my Grandfather. She was a cold-peanut-butter-sandwich-making, health-conscious "you-have-to-drink-a-glass-of-water-before-that-juice"-saying, at-the-same-time-coffee-ice-cream-loving, read-to-us-in-the-hammock, and later in life: oatmeal-colored-everything kind of gal. Before I was born, she would follow her husband on many a trek into the wilderness and to dressy dinner-parties, and I imagine she held her own quite well. Pictures tell the tale of her classic beauty, which she let shine through simple yet elegant attire. Later on, we found several decadent sequined and feathered masks in their attic, apparently worn to mask parties, as this was something people actually did back then-classy as heck (Granna would not approve of me using the word "hell" there, even though I believe it to be appropriate). Granna had a stillness to her- not in the sense of not moving, but just an understated composure that we are hard-pressed to find these days. She was a smaller woman, but the thought of her smile and round little cheeks fills this giant kitchen I am sitting in right now. Later in her life her laugh dialed down a bit and sounded like a little cooing owl (I know, owls don't coo. It's just, bah it's the best I can do to describe it), with her little face squinting up (also not really a saying. Okay, just bare with me and imagine the cutest little lady "hmm-hmmm-hmmmm"-ing with her eyes and mouth closed tight like a pin (is that a saying?) at things she found funny). She also was famous (well, certainly family and friend famous) for her to-this-day hilarious cat joke. If you haven't heard it, I'm sorry. I can't transcribe it; so you'll have to ask me in person. I do a pretty good impression.

She was a very intelligent person, and it wasn't until much later that I learned just how smart she was. Had she been born in a different era, she would have been a scientist, probably in the field of particle physics. We'd find science articles marked up with her gentle scrawl, readings about sub-atomic particle discoveries and general cosmology. I reckon that if she was still alive and we could talk again, we'd have many very interesting discussions. But instead of following what was apparently her hidden dream, she studied home-making in college, as was the way of things back in the 50s. As a child of the Great Depression, she washed and saved aluminum foil, and rarely wasted anything. The phrase I recall most heard from her (besides the cat joke that we'd plead for her to re-tell all the time, even up into the last years of her life), that I use all the time in my life now is: "everything in moderation." Which is how she lived her life. She also had an unwavering faith in God, which I admire, even if it is from (somewhat) afar and from a different place. I have learned a lot from watching all of this growing up, re-thinking over it, and re-examining it now as an adult. There are so many things I admire about my Grandmother, but her gentleness, steadfastness, and considerate moderation are towards the top. She was a magnificent woman.

We'd gallop around their ranch-style house and modest backyard, color with crayons in the aqua kitchen, play with Grover- their big yellow lab with quintessential dog breath, pick the delicate coins off the dried money plants, swing in the shaded hammock, work on puzzles and play dominoes in their mustard carpeted living room, and venture into the dark basement where Grandad did his projects. Much of my early writing was done on old sheets from yellow lined legal pads in that house, and especially in the basement behind the many-year-out-of-use bar towards the back near the sliding door. I'd sit on the dusty (a pleasant mix of real dust and wood dust) floor and write stories about lots of things, but a lot about a young girl and her adventures to summer camp where she would discover magic in one form or another. [side note: Where are those stories now? I wish I knew where they went off to, there's probably a short story in there somewhere, or maybe it was just digested and regurgitated conglomerations of stories that I was also reading at the time. Hmm. Well, we'll never know.]

Today I am remembering these two great people. Even though they both passed away before I was truly able to really appreciate them as human beings (I think), I consider them and who they were now, and I feel humbled and blessed, and tearful. There are many wishes I have about them, wished I had played my grandfather in tennis (he probably would have won, though I think I could have given him a run for his money), wished I could talk to my grandmother about cosmological ideas.

So today is full of anniversaries, these are just two. Both remind me of what being a human means. Both challenge me to leave this world better than it was when I found it.

 

Young and beautiful Isabel, whom my mother is the spitting image of.

 

Isabel (on left) and Mickey, her older sister (Easter 1947, the year before they got married)

 Lou and Bel and my two uncles Gary and baby Rick, before my Mom was born.

 

and, my Grandad, the ultimate jokster. I can hear Granna now: "Loouuu."

My sister Rie is the namesake of my Grandmother (Rie's middle name is Isabel) and they always had a special bond.

 

This is me three years ago, sporting one of my Grandad's spectacular pairs of pants. He was a colorful dude, in all the ways.

There's many more pictures, of course- these are just the ones I could find easily thanks to social media. There is one picture in particular of Isabel and Lou's first Christmas that I couldn't get my hands on early enough for this post, but it's probably my favorite picture of them. Perhaps I'll find it and add it in later.

Love you both.

Day 706: human AND dancer?

10 weeks since my last post. I may do better as a writer to be more disciplined at this, but honestly, I just wait until the impetus to write starts bubbling up. And it's been bubbling for the past few weeks- and after so many things happening, I finally have a moment to sit and write it out. My friend today asked what it would be about. I answered: "I don't know yet" because I don't. This blog has been a discovery for me, nearly every time I sit down to type, I have almost no idea what I will write about, and I make discoveries about myself and my life as I write. So here goes.

[edit: Upon reflection/re-read, this is serving as a catch-up post for people interested in what I've been up to, and not necessarily all of what I've been thinking about, which is usually somewhere between crying over beauty or being crippled by existential terror. But that's always sort of thrown in I guess. There's more and more still waiting in me, but I think it shall wait for its own blog post.]

I'm sitting in an unfamiliar kitchen in Ipswich MA where I am dog/house sitting. The pooch is an adorable, loving 11 year-old chocolate lab mix, and we're best buddies now (it's my second day). I may not need a shower as I've been licked head to toe by this baby.

I'm thinking over what has been crawling through my mind these past few months- and much has happened: good and bad things; and as always, Life showing itself truthfully. I 95% moved out of my old apartment and into my new apartment this past weekend. I can't believe I've moved so many times, and each time it is so similar; too similar. First, moving is sooo fun. In addition to being anxiety-ridden and stressful, I am seemingly always the last person to leave an apartment (read: I am responsible for cleaning the entire thing). Thankfully I still have another weekend to move the rest of my stuff (HOW SO MUCH STUFF?! HOW) and to clean it all. I've been fortunate to have time to move; the usual move out/in and clean all in one day is a nightmare, and I'm pretty sure everyone has experienced this at some point.

Good news on the goal-front! I have traveled a bit. I am making it happen, sort of. I haven't mentioned it yet, but I went to Southern CA back in April, and though it was the COLDEST WEEK in recent memory (WHY, HOW), it was more cleansing than I could even understand until I got back to MA. I've not traveled too much in my life yet, but that trip- though I spent many (too) many hours in my rental car driving all across the (Southern CA) world- it was healing and just what I needed. It was a difficult winter (yes, didn't we all love it), and I was seriously getting ready to move out to CA sight-unseen, but decided to take this trip first. I now don't have the urge to move out there, at least not at the moment, but just going on a vacation (my first personal vacation! ever!) cleaned me out and refreshed me in a way I didn't know it could.

I also just got back from SCOTLAND. Yes. International traveler, me. I went to Edinburgh for the Fringe Festival and it was divine and difficult, both of which I was anticipating. Edinburgh is a very walkable city, but it is also mostly hills. This was tough for my body, and though it got easier every day, it was still pretty rough and I was almost always tired. It was also quite chilly (though apparently the week I was there we had some of the warmest days in recent memory... I guess good karma from my iceberg CA trip?) and I am a perpetually cold being now, even when it's 70.

I first went to the Fringe Fest in Edinburgh back in 2011, and I saw some work there that completely changed my life. It inspired me to start my own theatre company here in MA, and I've been longing to return ever since (on a side note: a few months before I was diagnosed, I was planning to go back that summer with my sister). So in going back, of course I wondered if I would see anything that would break me like my first time in Edinburgh.

...It happened. It took until my second-to-last day there, but it happened. I almost missed the show because while standing in queue, I suddenly got a massive coughing attack (oh yeah, I got a great chest cold about mid-way through the week. Nights full of feverish delirium. Sweet) and had to step out of line while they let everyone else in. At the literal last second, I was finally able to compose myself and climbed to the very back of the stadium seating (which actually turned out quite nicely: I was able to see the entire stage, and being a shorter person, this is not usually the case.) The show was a physical theatre piece called Institute by a UK company called Gecko. It was absolutely brilliant. I could attempt to talk about it for a while, but honestly, physical theatre and dance is always it's own, usually wordless language. I would find myself crying, not even entirely sure why.

After it was over, I stumbled out of the venue, put on my sunglasses and tried not to burst out sobbing on my way back to my flat (thankfully not a far walk home). I couldn't speak. And when I finally could, it was tearfully to two girls who were in my flat, as tried to explain what I had just witnessed. They had to leave for something else, and I went to my room and lay on my bed and cried for a while. Seriously, just laid there and cried. I wasn't trying to "process it" in any real way, but rather just let the experience wash over me. And it still does.

The next day, my last day there, I went back to the venue after the show got out because I heard that the company actually comes out afterwards to chat with people, which is incredibly generous especially after giving everything on the stage! It was amazing to talk with them about their process and their different paths to finding themselves in a physical theatre company. They asked where we "went"- what the show was to us. I spoke a little bit about spending a lot of time in hospitals (there was definitely imagery resonating there), and how we all try to care for each other even though we are failing at it all the time. I was trying to not cry. One of them asked me if I was a dancer, and I sort of stuttered and managed to burp out something about missing my chance. One of the company members points to one of the quieter members and says "Chris was a firefighter in California."

For some reason this stuck with me. I have spent so many hours and days being so sad and pissed off about how my "new" body fails and constantly disappoints me. From lack of mobility for so long, my muscles atrophied, and it's taking SO MUCH LONGER to get back than I could have ever imagined. And my flexibility is so poor that usually when I try to stretch it just becomes a crying session. But seeing this company's work, and in talking with them after their show-- I have a renewed sense of vigor to build my body again. For the first time in a long long time, I feel like I actually might be capable of getting to where I want to go. I know that it will take a lot of work. Probably more than I even realize at this moment. But I want it so badly.

Before I got sick, the only real option that I was considering for continuing my education into grad school was physical theatre and/or clown school. People would chuckle after I told them, then I'd usually have to say, "no, but seriously." I don't know necessarily that clown school is in the cards for the future, but I feel this urgency--a vitality to jump start and get this body to a different place. I'm promising myself that the next six months are going to be dedicated to self-care in the form of HEALTH: building muscle and flexibility. Let's do this. I've always felt that I could have been a dancer. And now: who knows? Maybe I will be one.

Day 635: Art, Risk, Freedom.

I'm writing on a Tuesday evening, after a long day of work. Hey! I've started work again, at the cafe I used to work at before this whole shebang. I am very happy about it, and especially because it seems to be going a LOT better on my body this time around. And it's good to see the old faces coming in. I really have been getting stronger, and my body is approaching health (APPROACHING HEALTH! NEVER DID I THINK THESE WORDS WOULD LEAVE MY CYBER-OR-OTHERWISE-MOUTH). Still approaching, though. We move in waves, you know. Some days are good, some days I feel mysterious nausea and tingling in various parts of my body and the spasms take over... Every day is a Bertie Botts Every Flavor Bean.

But let's talk about good. 

My theatre company has put up another show! Can you believe it!? I really almost can't, except that it's happening already. I've directed and produced another original production: Between. Which, is an interesting title for many reasons, now that I really (have time to) think about it. We opened last weekend (it was fantastic), and we have another (final) weekend coming up. The show is joyous and full of play and imagination; but also doesn't shy away from real things in life. I always hope to strike a delicate balance between beauty and terror, to use Rilke's words, because that is what I find life to actually be. Somewhere either in beauty or terror, or someway moving or traveling between (see what I did there). It's actually a prequel to our first show, which was my senior thesis in college (we were not then officially The 5th Wall yet); The Wells of Fancy Dry. Both shows center around a little girl and her father, and some other...interesting...characters in her life. I have loved watching this show unfurl, and I can't wait to see how it grows and evolves this coming weekend.

You see, we do what is called intimate immersive theatre: theatre that is all around you, and in small groups. There is no formal 'seating' where the audience "sits", and no 'stage' where the actors "act". I usually call it part art-installation, part-interactive theatre. Though honestly, I shy away from the term "interactive" because for so may people that is a huge turn-off and the baggage of the term gives the wrong impression about what our company does. We endeavor to create theatre that is accessible to everyone. I love having people who have never been to the theatre, or who do not consider themselves "theatre-goers" in the audience (I love all the theatre peeps too, don't worry), because they don't know necessarily what the "rules" of theatre are. And here at The 5th Wall, we are not rule-followers, certainly not in the traditional theatre sense. It follows my true heart in that we carve our own path, and we create stories and characters and worlds that are platforms for experiences for the audience. Because part of our mission statement is about creating together: a safe space for both actor and audience to create stories and play. Just as most of our work is devised (ensemble-created), our end product is completed by the audience. Every singular performance is unique because of who is there. Every night, my cast faces the ultimate challenge of an actor and an ensemble: to perform a show with a character with whom they've never worked with; and often, never met: the audience. It creates some pretty spectacular once-in-a-lifetime experiences, for everyone involved. This is where our company name comes from. Some of you may be familiar with the theatre term "the fourth wall"; for those of you who are not: this refers to the invisible "wall" between the audience watching and the actors acting- sometimes in Shakespeare for instance, a character will 'break the fourth wall' and speak directly to the audience). With our company, we (almost/usually) altogether throw out this concept, and instead, draw a "fifth wall": one that separates us (the actors and the audience) from the rest of the world: from cronos time, from reality and all of it's negativity and self-doubt, from age definitions, from troubles big and small. While you are in one of our shows, we hope you are able to relax and feel safe to create art with us, and a singular performance is a special experience shared by those who were there.

It's a huge risk. Every production is a risk. Every single show is a risk. Every productions that I have directed (and so far, I have directed all of them for our company), at some point (usually towards the end when its getting really hard, and anxiety crunch-time is crushing me) I vow to never do this again. Whether it is theatre dramatics or just post-show amnesia, I always find myself back at it sooner rather than later...and the cycle continues. We take huge risks. It is a huge risk to throw your artwork into the hands of other theatre artists. Ensemble. And then a whole other risk to then throw that artwork into the hands of people--our audiences--whom I believe to also be artists; and I don't care at all what anyone says to the contrary. We were all children once, and all children play without any self-judgement. And that is true art: complete freedom to create.

And if you're still unsure about "interactive theatre" just know that we've had many interactive-theatre avoiders and (yes!) introverts come to our shows and truly enjoy our work. Seriously I am not making this up. Our greatest goal is to be an invitation to play- however much you want to give (or not) is perfect. This is what I always tell my actors. Come as you are, you are perfect.

Everyone has in them, somewhere- even if hidden- the potential for play. And if you've forgotten or misplaced it, let this space unlock that part of you. We were all children once. And children know how to create freely. 

So, if you're in the Boston/North-Shore area, you should come check us out. You can buy tickets on our website: the5thwall.org. I hope to sell-out this weekend. And all profits go directly into the company for making more art, and paying for rentals etc. I do not (yet...) take any money from this, but we hope to slowly start paying our actors as well as other collaborators (some collaborators we can pay; a humble sum yes, but pay nonetheless). So tell your friends. Bring your kids. We want everyone. Come as you are, you are perfect.

and also here's the title logo and poster that I designed. I wear many hats in this company.

Day 607: Two Years.

To use a borrowed phrase, everything is illuminated. The past few weeks especially, I have watched as the flood waters came in. I have been overwhelmed by the power of all the energy and the prayers and the words and the cards and the gifts and the time: the hours days weeks years and the people people people people. You guys, people. Human. Beings.

These days I don't know where to start anymore. When people ask me how I am, or how it's been, or how I've changed, or who I am now. I usually stumble out some form of an answer-- one that doesn't seem to make sense even to me. I feel like I am in a watching stage. Listening stage. Accepting stage. These past couple weeks, or months--I haven't been counting. It's not that I don't have things to say, or that I don't have things in my head. It's just maybe I'm often tired of talking for now. I'm learning about how it's been, how I've changed, and who I am now. I've been talking and talking and writing about it for a while, and now I just need to sit back and observe.

But something else is bubbling up. Gratitude. So much pure thankfulness. For so many things, but especially people. Too many people to name. I am shaking my head as I type this because it's literally beyond grip how many people, and how thankful I am for them. I am washed over with gratitude. If if wasn't what is feeding me, I would be drowned in it. I want to wear it like a blanket, or a robe, or a crown. I want to point to it like a nighttime field of breezy grasses, loud with peepers, with dark outlines of heavy spent sunflower heads bowing to the ground. I want to scatter the ashes of these past two years over the whole earth, thanking every human who has breathed air with me. 

You can not begin to imagine that any list would suffice, but I endeavor anyway because I must try. May chemo-brain be revoked for a few minutes. May you forgive any forgetfulness at the shrine of chemo-brain. And also, at the shrine of human-ness.

To my family. To Rie, you sweet, sweet darling. My protector and strength for so long. You sat next to me, held my hands, and held me up--sometimes very literally. My heart hurts over you. To my Mom, with the most appropriate name, Joy, who looked me in the eyes after I finally stumbled out "I have leukemia" and said "Okay. We're gonna do what we need to do." To Sar, for your quiet strength and humor. To my Dad, for many things, but especially for holding all the financial and insurance strings and somehow making it look like a kite. To Jacob: you precious, sensitive, funny sweetheart boy who reminds me to "Look up to the sky, Aunt Bekah. Look up to the beautiful sky". To Grammy and your cards and gifts and love. 

To Ed who shoved the unwilling me into his car and took me to the ER. To the YTC staff who took over for me opening night that fateful weekend. To nurse Jen who, of her own intuitive choosing, took the blood test that discovered it all. To Zach the EMT who held my hand in the back of the ambulance to Boston and who told me "You're gonna kick this in the ass." To the nurse who gave a paper flower to the old man in the bed across from me that first night in the Brigham and Women's ER. You're beautiful. To 700 year old Mary, my first hospital roommate, who blasted infomercials all night and tried to sneak a cigarette. May I endeavor to learn from and attain your feisty, stubborn spirit.

To my incredible oncology and transplant teams. To Gabby and your smiling face. To Sarah who performed the least painful of all my bone marrow biopsies. To Dr. Ho. To Erin. To Jess. To Lisa and Amy Joyce and Margot. To Nurse David in the ER. To countless other nurses, aides, examiners, technicians, transports, housekeepers, phlebotomists, and fellow patients. To the Infectious Disease doctor (his name is escaping me) who still waves and yells hello from across the room just as the elevator doors start to close, because he is that kind, and insistent that I am his favorite patient, to this day. To Dana Farber Cancer Institute. To Karen for listening and for your intuition. To the fellow masked-and-gloved old man who asked me to dance in the waiting room. To my soul-sister reading Anne Lamott on the 8th floor when I was 12 days out who told me "Just keep going." To Becca, for writing me that note. To the gentleman who got the call about finding his donor while sitting across from me. To Bambi. To Theresa. 

To Martha, Kim, and Justin. To Garet, Gail, Adele, Amy, Dick, Deb, Barbara, Lindsay, and Kathy. To Livestrong for encouraging me and forcing me to lift ping pong balls, then 3lb weights, and now 8lb weights and beyond.

To the saints who have carried me in their words. I cannot explain. I am still here because of something that you wrote. Rainer Maria Rilke. Mary Oliver. Jalal ad-Din Muhammad Rumi. Czeslaw Milosz. Anne Sexton. Martin Buber. Anne Bogart. Hannah Arendt. Anne Lamott. Abraham Joshua Heschel. Carl Sagan. The list goes on.

To my teachers and friends. I literally cannot name you all because I would be here for actually ever and my limited human/chemo brain would cause me to forget someone, or I would die of old age before I was done. If you're wondering if you're on this sacred list, you are. You are. You are. You are. Freaking Hump Day videos, you guys. Reading Steinbeck to me while I lay in bed. The Bash Leukemia Bash, to the artists and friends and givers who showered me with such love that I cannot contain within words. To mewithoutYou who came to play for me in the hospital because I couldn't make it to the show, to talking of Martin Buber, and grandmothers. To my theatre company, The 5th Wall, who waters me to grow like the stubborn plant that's prone to wilting that I am. To my readers. To all my soul mates. And to my donor: whomever, wherever, however you are. I love you.

And I raise thanks and gratitude for my body, the greek goddess who has marched, charged, wept, laughed, jumped, slumped, watched TV, danced, slept, sat, drooled and carried on through all of this. To my muscles that are growing and slowly learning how to bend again. To that whatever part of me that I am discovering, strangely: like a desperately old and yet new, friend; that small voice gaining sound, that part of me that endures beyond all things and throughout all my years crawling and climbing the mountains and crevices of this planet. To these same knees I used to scab up as a kid. To these same feet that have been carrying me around all this time.

You all saved my life.

Yes, in many many ways, two years feel stolen from me. So many things in and around me were derailed. My friends and family held their breath for a long long time--and we're still holding it, in some sense, though it's gotten easier, and maybe we take turns. I held my breath. I'm starting to exhale now. And when I exhale I try for peace and understanding and acceptance, but there is anger here too. I don't understand why bad things happen. Cancer is just one bad thing of so many, it's stupid. Philosophers and theologians and artists search for the answer, but it will forever be elusive. What can we do in the meantime? That's my quest, I think. Yes, I feel robbed and sometimes I feel really pissed off, and scared. I'm scared that it will return, that I will have to face death so close again. There are many things I can't control. But there are things that I can. And noticing, listening, watching things is one. One for now. And I now have a human body that I understand more intimately than ever before, and a human soul that I accept and trust more than ever before.

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here's a poorly executed collage of small things

 

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One day you finally knew
what you had to do, and began,
though the voices around you
kept shouting
their bad advice--
though the whole house
began to tremble
and you felt the old tug
at your ankles.
"Mend my life!"
each voice cried.
But you didn't stop.
You knew what you had to do,
though the wind pried
with its stiff fingers
at the very foundations,
though their melancholy
was terrible.
It was already late
enough, and a wild night,
and the road full of fallen
branches and stones.
But little by little,
as you left their voices behind,
the stars began to burn
through the sheets of clouds,
and there was a new voice
which you slowly
recognized as your own,
that kept you company
as you strode deeper and deeper
into the world,
determined to do
the only thing you could do--
determined to save
the only life you could save.

-mary oliver, The Journey

Day 559: more human

Just a bit over a year ago, this was the entry in my private journal:

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every day is a drudgery waiting for something in me to completely give up and die by organ failure or overdosing pills i want it over. im tired of keeping it up. i'm tired i can’t sleep. my mind is a blank white room with no windows

---------------------

I thought I could never emerge from under that depression. Everything that I had attached to my meaning of self had been stripped away. I had nothing to give. I felt my personality had truly died, I was just an endless cavern of need, and the world felt like a constant flashbang: stunned and wide-eyed ringing but out of focus and I couldn't shake it.  Who I was poured out from under me like a bowl of sand.

And now, I can look back. I am actually looking back on that time when I couldn't see a future, as in, I am past it. I really am in total shock that I have somehow existed this long, and through all that has happened. What has actually happened is a mystery to most people that I know, save for a precious few; and even then, I'm still the only one in this body. I have written off and on throughout this thing: some of it made public through this blog, and many short ramblings of days when a few depressive words was all I could muster. But there is so much that went undocumented, and so much that I don't even remember (that may be for the best, honestly). I am astonished to find myself on the other side of these almost two years. And for that, I can only attest to the raw human spirit. I basically feel like a witness to this. I've discovered, after the fact: something in me, perhaps inherently--and it is not something that I feel I have cultivated with any real energy. Usually my energy depleted by just existing every day, and the little animal of my soul nosed around in the dark, so hungry. I had my plans, of course. Cultivate an inner universe. Let everything happen to you. I tried my best, but most of the time it felt like I was dragging my lump of a frail body behind me, aimless and stumbling. But that human spirit emerged, like the runt of the pack: weak but determined. 

And I even find myself on the other side of the last couple months, in some ways worse for wear. Thanks, winter of the soul. But my mind is continually changing; striving (I hope) towards enlightenment, or peace, or something.

So far the answer lies in what I have come to understand of the world: there is no perfection. There is no one goal, no one place where we all gather and do the peace dance forever and ever amen. There is no one right choice and one wrong choice. I am learning that life is not a linear groove drawn in the ground, stretching out in front of you. It's not clean, either, Bekah. It's so goddamn messy, and you bumble along until you find something that you can hold on to for a while. And then you let it go. Or it lets go of you.

I'm not trying to be fatalistic. But there's something about who we are throughout our lives, void of whatever we are holding on to, or whatever is holding on to us. Human imagination: the raw human spirit that can think beyond the hole you're in. It's one step to conjure the million possibilities. The next step is choosing and doing. As far as I can see, the next rung on this ladder out of here is human agency: the capacity to act in the world. I believe it has the most to do with who we are, on a basic level, even more than what you actually "do". I’m interested in the person who is making these things happen. It’s something independent of who you know, what you have, what projects you are involved in, what you do for work. True freedom is being able to be who you are, where you are. And maybe if I can find that freedom, it will allow me to make a difference, somewhere somehow in a small way. When I think about what I am actually “accomplishing” in “the world” right now, I start to feel bad about myself. I don’t have a job, it’s been months since I’ve had a real creative project, I'm sick a lot, my body is a shitball, I don’t see people that often, I don’t go on vacations, I don’t have a career I don’t have a house I don’t have a boyfriend I don’t have a dog I don’t have a wittle bundle of joy I don’t have a five year plan, and my room is a mess. I’m not saving people.  The causes for which I feel deeply are plugging along without me. I don’t have a field, I don’t have a plow.

But I am sensing, over everything else, the importance of being an authentic human being on this hilarious rock flying through a dark universe. And that feels more real and enduring than any other one thing.

My not having most of that list above doesn’t bother me too much. It's not my goal in life to get married and have babies. For some people, that may be their most prized wish, and I am not hating on that at all. I find what ends up bothering me the most is the missing out on things that I wish that I was apart of. I want to do things that matter, I want to make art that reminds people they are human. I want to be a part of the movement to start saving this planet. I want to have a garden, I want to be flexible and strong. I want to feel beautiful. I want to be happy.

But none of those things will make me happy. Maybe the act of moving towards them will. Putting in the time and the energy. But maybe being a true human all the way through my life will. Finding the something in me that carries through all these hard things, that endures through jobs, hard conversations, relationships, health problems, trauma. Simplifying the society-made and self-perpetuated pressure on me to be something, and focusing on being Someone.

Sometimes people ask me how I am different now, and I have been asking myself that too. Now, on the almost other-side of cancer as a young person, how has it changed me? Well, I feel a sense of my self that wasn’t completely present before cancer. It’s hard to make that sound anything but corny, but I really mean it. 

I’ve spent a long time referring to pre- and post-cancer Bekah as different people, mostly because the difference is depressing and I long for the old me. Sometimes in my mind I see this dichotomy: Pre-cancer Bekah was strong and flexible multi-tasking never-sick I-don't-need-you-to-lift-that-for-me dancing-and-cartwheeling girl. Post-cancer Bekah is flabby boney blotchy-skinned less-spunky rubber-band-muscled somewhat-bald can’t-stand-for-more-than-an-hour lonely chemo-brained sad girl. But I have been trying to stop doing that, because ultimately, it’s detrimental to progress. So I'm practicing autonomy from the ‘I used to be’s. Those comparisons suck. They paint a picture of two different people: one better than the other, but I’m still the same person. And it ignores the things that have grown: my ability to handle being alone, my deeper understanding of human trauma and how we deal with it, my personal coping mechanisms and skills, my ability to slow down, and how I relate to people and the dynamics of relationships. I have learned that everyone, no matter what age, is still learning something. And again, it sounds super corny, but I have gained an understanding of myself that I didn’t have before; a baseline calm has emerged. I have a sense of who I am that endures through my whole life, regardless of good times or hardship. And I carry all that's happened to me, but it isn't all of who I am. It’s not a perfect picture, I’m not a superhero gandhi. But I feel like my interactions with the world have shifted: I see myself differently, and I see the world differently. I am more in tune with myself and I feel more peaceful, in general. I can look back, and forward, and I see this whole thing more clearly--even the fact that I can’t see it all. I feel like I understand the point, more than I did. At least, today. This doesn’t mean I don’t get agitated, because I do. I get both rightfully and wrongfully agitated: at love and injustice and at dirty dishes and bad hair days. I’m still a human. No, I’m more of a human now, I think. I am more human. 

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Everyone should be born into this world happy
and loving everything.
But in truth it rarely works that way.
For myself, I have spent my life clamoring toward it.
Halleluiah, anyway I’m not where I started!

And have you too been trudging like that, sometimes
almost forgetting how wondrous the world is
and how miraculously kind some people can be?
And have you too decided that probably nothing important
is ever easy?
Not, say, for the first sixty years.

Halleluiah, I’m sixty now, and even a little more,

and some days I feel I have wings.

-mary oliver