world of hurting things

I'm sitting slightly chilled in my parent's kitchen, watching sparrows bombard the two bird feeders outside the window in groups of twenty. It's raining and the sky is set in a timeless grey. I am listening to Sufjan's Carrie and Lowell over and over, and resting in a strange cold sweat and introspective mood. My left fingertips are telling me I've started to pick up my guitar a bit again, after a long long rest. I'm certainly not hydrated enough, as it seems I never can be. I was late taking my meds today and I'm paying for it, see the strange cold sweat mentioned above.

I'm contemplating life; a common pastime for me, though not always enjoyable as the definition of pastime suggests. And for the record, "contemplating life" is so stupidly generic and I already hate myself for not having better words. But the honest truth is I am sort of in a distant land right now. Maybe it's Sufjan. Maybe it's the rain and dark haze outside, maybe my constant state of being a little bit cold. But it definitely has to do with news from last night. A friend (we've never met in person, though we have mutual friends. We've been quietly following each others' blogs for over a year at least) and fellow BMT recipient has relapsed and this time the cancer is becoming resistant to treatment. A few months ago, he and their family were planning for a second transplant from an unrelated donor (his first donor was from his brother). But a transplant is only possible if chemo can do a lot of the work first. Chemo/radiation has to put the body into remission before a transplant is possible. Remission doesn't mean it won't return- especially with a blood cancer where your body has itself fundamentally mutated and actually produces cancer cells instead of healthy ones. Chemo has to work.

Their family (He, his wife and their two young daughters) had to face the decision of whether or not to proceed with treatment. Two days ago, on Thanksgiving, he started a final round of chemo, with hopes of a miracle. With people interceding all over the globe for this man, I am struck still with terror. It puts my own struggles into a tiny box as I contemplate the Terror their family is living through. And they keep going, somehow. Is it bravery, strength, necessity? This is a quote from his blog from Thursday, which is written mostly by his wife:

"We were given the choice yesterday whether or not to continue treatment. We've decided to go one more round. Ian checked back into UCSF and began a new regimen of chemo last night. If this puts him into remission, then a transplant is still possible. Otherwise, apart from a miracle, he will be left to survive on blood transfusions until he is no longer able to survive."

And so Terror descends. Why life seems to continuously and faithfully fall into one of these two categories: beauty and terror, I do not know. I do not know how Rilke could capture something so truthfully and with such simplicity. We all search for these little quips to live by: beautiful little sayings and quotes from great people that have the power change our perspective with a few simple words. And though I do not read German, I imagine that the lines from my life's mantra in their original language would be even more moving. But terror is terror. And I've had my share of it. But I place myself inside the imaginings of where their family now resides and I am lost. I do not know how to keep going. I have few words, just feeling that escapes illustration. I am afraid. Selfishly so, I must admit. This is the greatest fear of any person who's life has been altered by illness. The return. The unknowable and arbitrary non-reasoning behind it all. The switching of the lens, once again, through which you see the whole world. I want to pray, but I hardly know how to anymore. I whisper Help. But I don't know that anyone is listening, or if there is someone listening- if there is any power to stop chaotic and irrational happenings. Or why would this Someone choose me or you or him to save. To step in, here, now. When millions of people die every day. When people kill each other. When people kill each other and die because of arbitrary things. When we are all going to die someday anyway.

I'm trying to not sink into despair. And I'm not trying to belittle prayer or faith. I wish I had both. I whisper Help. If anything, I do not believe in closing doors. I don't mean to push or leave anyone in despair. I don't mean to condemn anyone with these words. I am attempting feeble honesty in such sorrow and fear. I try not to close doors. And prayer is an open, confusing door. In my mind I envision a ball of light, my arms holding out and being warmed and comforted and surrounded. But it is so difficult to hold that picture. It is difficult to believe in miracles. It is so difficult to try.

Shall we look at the moon, my little loon
Why do you cry?
Make the most of your life, while it is rife
While it is light
Well you do enough talk, my little hawk
Why do you cry?
Tell me what did you learn from the Tillamook burn?
Or the Fourth of July?
We're all gonna die.

-----

Should I tear my eyes out now?
Everything I see returns to you somehow
Should I tear my heart out now?
Everything I feel returns to you somehow
I want to save you from your sorrow

The only reason why I continue at all
Faith in reason, I wasted my life playing dumb
Signs and wonders: sea lion caves in the dark
Blind faith, God’s grace, nothing else left to impart

Do I care if I survive this, bury the dead where they’re found
In a veil of great surprises; hold to my head till I drown
Should I tear my eyes out now, before I see too much?
Should I tear my arms out now, I wanna feel your touch

Should I tear my eyes out now?
Everything I see returns to you somehow
Should I tear my heart out now?
Everything I feel returns to you somehow

-------

This album is a haunting gaze into grief. Every single song is a mysterious piece of humanity. Perhaps after enough repetitions it may finally have a cathartic affect, but right now I am just sitting inside its elegiac womb. I find myself having to lean on other people's words so much more than my own in times like this. It is my only prayer, for Ian, for myself, for this world of hurting things.

Also,

I feel I must tell another, simultaneously occurring part of the story from my last post. I left this section out of the last post because 1) it’s a lot to take in (length-wise and subject-wise) and 2) I think it deserves it’s own platform. This one's is a bit longer than my normal posts, but I do hope that people are still interested enough to read it. I tried to make it readable. If not, don't worry. I won't know.

I am cursed—for lack of a better word, I don’t know, it’s often a burden—with candor, so here goes.

During intake in the ER, they always ask you a series of questions, including: Have you experienced any suicidal thoughts in the past three weeks? Again, cursed with honesty, I answered yes. Because I had, it was the truth. The recent chronic pain and isolation had put me into a place where I questioned the purpose of my survival; what is this life, what kind of existence is it to just be riddled with agony as I watch my life and dreams crumble around me again and again, each day slipping away from me as I lose control over everything, including my body. I had no choices, just pain. So I said yes.

Little did I know that this started a silent chain-reaction of systematic red tape to cover a hospital’s ass. It wasn’t until later that I realized why the police officers were just *seemingly randomly* positioned a mere 10 feet from us (my mom and me) while I lay in a bed in the ER hallway. Why there was a nurse lingering by the end of my bed as the nurse who put in my IV F’d the first try which resulted in the one of the most disgusting things that has ever happened to me, I won’t elaborate. He totally botched it, and was ripping and throwing things around, carelessly wiggling the needle in my arm, not looking at me or acknowledging at all that I was (visibly) very upset about it.

Hours later another nurse came over to tell us he finally “had a room” for me, and we were lead down a hall. Into the psych ward we go, which smelled of urine, and were shut in a stripped-down and, in effect, padded room with literally just a bare bed and a tiny TV in the wall behind a plexi-glass window, and I presume hidden cameras. Both of our phones were dying but we couldn’t charge them because there were no outlets in the room: so occupants couldn’t electrocute themselves. Outside the door with a tiny window was one of the policemen; eyeing me and the hallway with such boredom I can’t even properly describe it. It was as if as soon as I was flagged as a possible suicide candidate (idk wtf to call it. Suicide candidate? idk wtf.) I was criminalized.

And it continues. The psych ward booth guy asked if I wanted the TV on. I didn’t care but the room was so desolate and sad I said yes just to have some company. It was 3am by this time, so what else is on the TV but a paid commercial for some ministry for starving children. If it wasn’t straight up dark comedy enough yet, we watched as the camera pans over said starving children, and then cuts to one in particular as the voice-over states, and I QUOTE: “The pain in Angela’s eyes is evident. The trauma she has endured lingers, she is starving, her father COMMITTED SUICIDE one year ago.” (um, emphasis added, she did not scream this.) My mom and I just looked at each other and could barely eek out a weak laugh in the middle of a treacherous night. If this isn’t black comedy meat for my one-woman show, I don’t know what is.

If I had actually been in serious danger of committing suicide, everything I had experienced so far would all but complete the heartbreaking deed. The distinct shift in how I was treated the moment I answered that question, the sterile yet dirty room, the policeman sternly lurking, and now the TV TELLING ME ABOUT A STARVING CHILD WHOSE FATHER KILLED HIMSELF. Can this be real? My mother asked the man to turn off the TV. So we sat in silence in Barren Urine Room for a while until I told my mom to go home and try to sleep.

Around 6:30am or so I was finally moved upstairs to the main hospital, but I was so out of it and exhausted to notice (yet) that I was put on what’s called “one on one”, which is I guess a kinder way of saying “suicide watch”. This means there is someone in my room at all times: I had to pee with the door open lest I find some way of killing myself in the tiny hospital bathroom. And this wasn’t told to me, I had to figure it out on my own. A CA sat down in the chair beside me in the morning, and at first, I was confused. I asked her if she was waiting for someone. She just said “No, just hanging out. For the day.” I then proceeded to talk to her a bit about my situation and mental state (OMG MISTAKE) until at last I silently and sickeningly realized why she was there. She was my babysitter. When Babysitter #1’s time came for a break/switch off/IDK, Babysitter #2 came into the room and talked to Babysitter #1 about me in the third person RIGHT IN FRONT OF ME, and proceeded to then sit in the chair one foot from me and text on her phone. She did not ONCE look at me, introduce herself, or talk to me at all for almost two hours. Criminalized. I’m pretty sure this is the exact opposite way to treat someone who may possibly be in danger of killing themselves.

Then Babysitter #1 came back, and I went into a pretty bad leg spasm. My nurse happened to turn up in the middle of it (none of the nurses were ever there when I had spasms in the hospital, this was the only time. Again, no one but my family and a few friends have ever seen what they are like which just continues this inability to convey how bad they actually are) and I was trying to communicate that I hadn’t had any magnesium that day yet, which I need to take 4 times a day. The nurse replied curtly, “Well, you never said that.” And I tried to say (again: while in INSANE PAIN it’s hard to talk at all, let alone have coherent thoughts and communicate them with any clarity) that I was told they didn’t need to know my supplements while I was in intake in the ER, and that when THIS EXACT NURSE went through all my meds, dosages and times with me again when I finally made it upstairs to the proper hospital, the computer kept freezing so we just skipped it to “come back to it later”—which never happened. I wasn’t really able to get this all out (re: PAIN) and the nurse shot back at me “Don’t you give me that attitude. You never said anything about magnesium.” 

This upset me a lot. I DO NOT give attitude to nurses. I make great efforts to be extremely courteous and I hate asking them for anything even though I know it’s their job to do things for me. I have a fear of being That Patient who is talked about amongst the staff: who’s needy or rude etc. etc. Because I know they do it. I panted, “I’m not trying to give you attitude, I just—” she cut me off “Yes you are, you’re telling me I’m not doing my job! You’re giving me attitude!” and (with me still in agonizing leg cramp world) she stormed off. Again, I am not exaggerating. And Babysitter #1 sat quietly throughout this entire exchange, on her iPhone.

After the nurse left, I was sobbing. My leg cramp had subsided but I felt crushed and misunderstood on so many levels. This nurse had completely misjudged me, been cruel to me, and on top of it all—I’m on EFFING SUICIDE WATCH you’d think she’d be a bit more understanding or maybe care AT ALL. I’m kind of crying as I write this, it was so horrific for my psyche. I sobbed for a really long time, crying aloud how I’m not someone who gives attitude, I try so hard to be respectful and thankful for everything my nurses have ever done for me. I’ve spent months in the hospital, I’ve had dozens of nurses. I hate asking them for things, I don’t want to be a troublesome patient. etc. etc. My hospital bed was shaking violently with my heaving, tearless sobs. I was texting my mom to come as soon as she could, because I was alone in this room with a fucking silent as my apparent soon to be grave one-on-one who never said a word.

After my mother arrived and I sobbed into her sweater for a while, Babysitter #3 switched in. She talked to me/my mother a little bit. My mom said something to the effect of “this must be a really boring job to have to do this” referring to the one-on-one. She replied, “Actually, we’re usually rushing around and stuff, so it’s kind of nice to just sit here” I let the meaning of that wash over me. Kind of nice. Kind of nice to just have to sit doing nothing with someone who wants to die. Thank god someone’s on suicide watch so you can have an easy day on the job. NBD. Just another work day, but thank god I don’t have to do SHIT except watch this stupid girl shit with the door open.

The psychiatrist finally made it to my room so I could be “evaluated.” I didn’t mind her too much, my mom was in the room and I said it was fine for her to stay. The psychiatrist seemed surprised. But I am very open with my mother so I didn’t see why she had to leave. Also I felt better with her there, someone who actually knows who I am, after everything I had endured already. Somehow I seemed to convince her that I wasn’t in present danger of killing myself, and the godforsaken “one on one” was lifted. Thank god I can pee alone now and maybe feel a little bit more human. A bit.

Another day and night goes by, and I am supposed to be going home. But the doctor looked at my newest X-Ray and white count and was not convinced that I was healthy enough to leave. I have to stay another night. I miss the class I am supposed to teach. I cancel more plans with friends. I am stuck in a white box.

When I am cleared finally the next morning to go home, I’m told I need to be “evaluated” again by the psychiatrist in order to be released. I’m told this will take a long time because there are a lot of people she has to see before me. So I wait. I read and walk the loop of the floor. I am feeling okay, but I want to shower. I ask to shower, because I need towels and also help to cover up my (now third) IV so it doesn’t get wet. The nurse says she’ll be right back. So I wait. Time goes by. Nothing. Again, I am afraid of being That Patient, especially for something like showering, when perhaps my nurse was occupied with something actually threatening. I don’t know. Two hours go by. I don’t know why I don’t say anything or call for the nurse, but I don’t. I make cup after cup of herbal tea, pee, read my book, pee and pee, but I’m getting frustrated and irritable—understandably so, I should think. I just want to go home.

Finally the psychiatrist comes into my room, where I am still waiting to shower (it had been several days since my last shower, I’m not feeling Great at the moment). I don’t remember the exact discourse that followed, but I tell this lady that I’m not suicidal, not really. She says, “Well, you said you didn’t want to live—” I tried to explain to her the way I see things: the difference—perhaps subtle—but the difference between wanting to kill yourself and wondering why you survived and maybe wishing you were dead in the height of extreme pain. I tried to explain that recent circumstances have pushed me to a point of not wanting to do this anymore, but that I’m not making any ‘plans’ to off myself. And I see those as two different things. She did not. We were passing ships in the night.

She asked if I had ever felt this low before, and I said yes. She asked when. I said, about this time, the past two years. She asked if I had heard of seasonal depression. I said yes I know that plays a part in this. But that I also spent an entire year in quarantine isolation after my transplant, seeing only the inside of my apartment, car, and the hospital. She said “Hm. That must have been difficult.” UM YES IT WAS BLOODY DIFFICULT YOU ASS. I’m so tired of people saying that. I understand it’s probably most people’s reaction to hearing even just that tidbit of my messed up life of the past two years, but seriously? It’s your job to handle this kind of thing. Not make me feel like a project gone wrong.

She asked how I had gotten out from under the depression in the past, and that brought me back to a year ago, about this time, when my disposition towards the world was pretty dark. I knew it, but I didn’t know how to fix it. I used to view the world as an inherently beautiful and magnificent place where bad things sometimes happen. But there was a gestalt switch in my metaphysics: the world was now a dark place where good things sometimes happen. It felt like all the good things were feeble attempts, like tiny matches that we lit. I didn’t see these ‘matches’ as an unworthy cause, but ultimately pointless because eventually they burnt out and plunged us back into darkness. I had a few moments of insight at the time, brought on by a few occurrences and conversations with people (which I wrote about, I believe in December-ish of last year), and I realized I needed to take control back from the darkness. I had once believed the world a beautiful place. How can I get back there? I must be able to. What had changed about the world? It was me who changed. I didn’t want to be depressed any more.

I realized that I was (and am) impressionable, like a sponge. I (finally, at 26.) realized that my surroundings have a great impact on me, and sometimes for the negative (i.e. watching The Walking Dead a lot and alone, and its picture of the human race is pretty dark...), so why wouldn’t it work the other way around? So I took action. I read poets and listened to music that had once inspired me to see the world beautiful; poets whom I trust deeply and weep over. I surrounded myself with life-affirming things, made plans with friends, made lists of things that made me feel strong, courageous, an agent in my own life.

All of this was rushing through my head when she asked how I had gotten out before. After a pause of thinking all of these things, I started to try to explain what was going through my head, tried to say I read poetry, but my voice was broken up. I started to cry—not out of sadness, but because Rilke’s words flooded in: “let everything happen to you: beauty and terror. Just keep going. No feeling is final.” And once again, the floodwaters clean you right out. At first she didn’t understand what I had said about poetry- as in, she literally didn’t understand. “You do what? Read?” She then misunderstood my emotion.

She proceeded to rattle off all of the things that I could possibly be depressed about—“watching all your hopes and dreams for your life collapse—“etc. etc. I assume an attempt to place herself in the “But see, I get it” perspective. But honestly, listing off all the things that are shitty about my life was not really helping. I was still crying over Rilke and now also about my sad half-life she had so generously taken inventory of for me. And I started to get upset and scared because she has the power to forcibly hospitalize me for this if I didn’t answer correctly or say the right thing right now.

She stood up and moved towards the door. I was looking out the window at the sun and the sky and the birds—just the day before, my parents and I had seen a starling murmuration right outside my window. Mary Oliver’s “Starlings in Winter” floats to my mind. That, and fear.

“Well, I was feeling better about this at the beginning of our conversation, but now I’m not so sure. You’re not engaging; you’re not looking me in the eyes.” Well now I couldn’t look her in the eyes; my blood was starting to boil. A curious experience: to cry over beauty and fear and rising anger all at the same time. And then she made a statement that I can only describe as a riddle; whether it was to purposely trip me up or not, it was confusing as hell. Something to the effect of: “Am I incorrect to understand that you are making a commitment to preserving your life?” Now that I’ve typed it out it doesn’t seem nearly as confusing as it was sitting in that hospital bed. But my eyes were burning and my head was pulsing with Blood and Mary Oliver, and I looked at her and asked her to repeat the statement. Remember, she held the power to forcibly hospitalize me. I needed to answer firmly and correctly—the only problem being, I couldn’t tell if I was supposed to say yes or no. I’m sure my asking her to repeat it (to which she did, but in an even more back-ass-wards way, NOT the same statement as above) didn’t help my case either. I stared at her blankly for a moment while I tried to logically break down her brainteaser to deduce what I was supposed to say so I could go home. I decided upon Yes. (Note: Yes was the “correct answer” to her second, amended but still puzzling statement. I was making a commitment to preserve my life.) But I believe she took my needing a repeat along with the blank stare as my brain picked apart her daily double as a signal that I was lying.

Standing at the doorway she declared, “I know my job, and I know it well. But even I’ve been fooled before. I’ve been tricked before.” Now I really was starting to see red. And again, I was completely, utterly misunderstood.

On some levels, I get it. I get it. No one wants anyone to kill themselves. This woman most definitely has seen cases where she released someone under their own false pretense, and seen it go bad. I get that. I don’t envy her job for that exact reason. It must be very difficult to discern based off of one or two short conversations. But this woman doesn’t know me at all. Of course she doesn’t know that I am cursed with honesty. That I am at the mercy of strong emotions and can rarely hide them. She doesn’t know how much I’ve fought for my life already, but that sometimes you just get tired of fighting. She doesn’t know how much I have changed in the past few years, how I’ve grown quieter and more at ease being alone: something I would have never equated with myself at 24. She doesn’t know how Rilke, Rumi, Mary Oliver, Anne Sexton, Steinbeck, music, my mother, family, friends, even strangers have saved my life again and again. She doesn’t know. How could she? She misinterpreted what she saw based upon what she had seen before. I understand how this could happen, but it didn’t make it any easier in the moment. I was instantly hot with panic that I was going to be hospitalized against my will and confined to Barren Urine Room and the like for who knows how long. And if I am disbelieved and discredited now, what will change in the future?

“I’m going to go have a talk with your mother on the phone,” she said, my jaw clenched and eyes glued to the window, burning with beauty and terror. She left. As sunbeams crossed my bed sheets I sent a silent prayer out into November, who was resting unbiased outside my soundproof glass porthole.

After about 20 minutes of tearful limbo, my CA finally told me I was “ok”: cleared to go home. Thankfully the psychiatrist had listened to my mother, even if she didn’t fully believe either of us. She told my mom that she was concerned from one mother to another. I do appreciate that glimmer of humanity thrown into this chaotic mess. After my mother arrived to take me home, and as we waited for the rest of the paperwork to be finished (a million years), I saw the psychiatrist hurry along the opposite wall past my open door without glancing in, her heels clicking down the hall to her next evaluation.

I don’t write this to condemn anyone. I’m just telling my story. Mental Health is a serious thing. I will be the first to confirm that unambiguous, nonenigmatical statement. I had no idea that my one word answer to a question asked me in the ER would end up setting off the most distressing part of that week in the hospital. Not the pneumonia, not the spasms. How my mental health was analyzed, regarded, dealt with. The change in how I was treated as soon as I was flagged. I felt disrespected, other-ed, criminalized and belittled. I’m not impressed. But I hope to shed light on one story of many. I understand that it is immensely difficult to systemically approach mental health while taking into consideration and properly weighing the many facets and nuanced factors that contribute to a person’s mental state. But I would have hoped to see easily achieved basic humanity as part of the protocol. I don’t pretend that this is the worst-case scenario; in fact I don’t believe it to be even close. I also don’t pretend to be ignorant that other hospitals, nurses, doctors, psychiatrists and other medical personnel actually do a great job at handling these kinds of delicate situations of many moving parts. This is just my story. Afflicted or otherwise with honesty, I tell my tale.

Starlings in Winter by Mary Oliver

Chunky and noisy,
but with stars in their black feathers,
they spring from the telephone wire
and instantly

they are acrobats
in the freezing wind.
And now, in the theater of air,
they swing over buildings,

dipping and rising;
they float like one stippled star
that opens,
becomes for a moment fragmented,

then closes again;
and you watch
and you try
but you simply can't imagine

how they do it
with no articulated instruction, no pause,
only the silent confirmation
that they are this notable thing,

this wheel of many parts, that can rise and spin
over and over again,
full of gorgeous life.

Ah, world, what lessons you prepare for us,
even in the leafless winter,
even in the ashy city.
I am thinking now
of grief, and of getting past it;

I feel my boots
trying to leave the ground,
I feel my heart
pumping hard. I want

to think again of dangerous and noble things.
I want to be light and frolicsome.
I want to be improbable beautiful and afraid of nothing,
as though I had wings.

Day I've stopped counting: Updates and Winterizing my life

"Hello from the Outsiiiiiiiide. I'm freezing over; soon you'll cryyyyyyyyy" -November. 

(November is such a plagiarizing cheat, Adele, I'm sorry.)

Actually, we’ve experienced record warmth this year ("70s? IN NOVEMBER?" I rejoice). But I know its only a matter of time before snow arrives (this part's not so bad: it's beautiful and exciting and surfaces those nostalgic memories of every first-snow you can recall), the dagger-like wind picks up (and due to the fact that I am a paper-doll at the current moment, I fully expect to be whisked away to some distant land in the clouds never to be seen again. I'll write to let you know what it's like to fly, if I can find a pen and a reliable carrier pigeon), and the dropping temperature will chill both my physical and mental state into an angry Dark Ages. I hate the winter.

I remember being young and exhilarated by the prospect of this time of year: waking every morning with the glittering hope of a snow day, watching the school-cancellations scroll across the TV; building underground tunnels and igloos in the mountainous snow banks left by the plows; taking turns playing Snow Queen with my sisters--and when our cheeks couldn't take it anymore: hot chocolate and marshmallows awaiting us inside. It also meant that the holidays were approaching, obviously. Thanksgiving and Christmas: highlighted with melt-in-your-mouth sugar cookies, little red candles spinning the (German? Swedish?) nativity pyramid on the kitchen table, and the smell of evergreen wreaths when you walk through a doorway. Actually now that I've written all of that, it doesn't seem half as bad. Nostalgia is a very powerful thing.

But as you get older and there's no school days to be cancelled, snow means shoveling, scraping ice off your car with numb-ass hands because you can't find your gloves, sitting bitter and freezing as you wait for the engine to warm up, and for me: being perpetually late everywhere because I always forget to factor in how much longer it takes to leave (bundling up the layers, and readying the car, see above). I've also learned something about myself in recent years: I hate being cold. Not just that it's uncomfortable, but I actually get angry. Like really, really angry when I am cold. It's as if my brain shuts down in extreme efforts to focus on staving off hypothermia, and everything and everyone is a noxious distraction from my every cell trying to zip up its tiny winter jacket that the wind seems to blow right through. Not to mention the time-change and ever-shrinking hours of daylight. As soon as I'm cold, I turn into an ogre-ous (this is now a word. You’re welcome, English) form of Bekah. It's terrible, and I hate this version of myself. 

And on top of all this (the impending Doom), I’ve also had some not-great (read: the worst.) life things in recent weeks. I’ve written before about my muscle spasms. Well, they’re reaching an all-time high/low, whichever/whatever. The New Deal: about a month ago, my spasms went (quite suddenly) from a more intermittent irritation (though still excruciatingly painful when they’d happen) to a full-blown life-takeover. Every single day was a time bomb, counting down a spasm clock with the launch procedure completely unknown to me. All I knew that was at some point every day a part of my body will give up the ghost and submit me to torturous agony, often setting off a chain reaction as other parts of my body join in on this...escapade of debauched fate. (I am not exaggerating. I have a high pain-tolerance and I try very hard not to embellish my experience of pain. I have always been this way. This is the same person who unknowingly tore her (first) ACL and couldn’t properly walk for 3 weeks and then couldn’t squat, kneel or go up stairs without pain for over 8 months, but thought she’d just ‘power-through’, and then ignored red-flags of a serious medical condition, aka Cancer, for almost a year after that...dumb. So. Not an embellisher.)

And then every night, frequently hourly: spasms jolting me awake and I try to untangle myself from a blanket mess/straight-jacket to launch out of bed to try to quell the pain that I can only describe as my muscles attempting to break my leg bones. Literally every hour. Clockwork, I tell you. This extreme change in the frequency and intensity of the spasms scared me, and I spiraled real fast into a very dark depression. My life was being taken over by an evil dictator who lashed out erratically, but with enough regularity that I had to cancel, reschedule or amend all plans and appointments for weeks- which in turn caused isolation, which heightened my depression. And in addition, I had recently started taking prednisone again in a seemingly last-ditch effort to regain control of this body spinning off the road. Prednisone is a steroid/archenemy/med that doctors throw around like candy. Sure, it can help a lot of things in a lot of cases, but the side-effects both short and long term can be very bad. Very very bad. Read: bone necrosis, for one. Steroids also F with your brain and intensify any emotion you experience. Read: Depression. So, yeah. Spinning wheel of Death, Brain-side.

I was maxed out. I was maxed out on the pain, and maxed out on dealing with it. Every time felt like the last time I could handle it, I just couldn’t do it anymore. I didn’t want to do it any more. Most of my days were spent wishing I could just be knocked out or put under so I wouldn’t feel it. When I wasn’t just straight up crying (or screaming. I hate to admit this, but I sometimes scream into my pillows so I don’t wake neighbors. These muscles are not messing around. At all.) I’d just be asking god or my body or whoever could be listening: Why? WHY? and then No no no no no no. Your brain can do some pretty weird stuff when you’re in pain. I compulsively talk to myself because, psychology. “You’re okay, you’re okay, you’re ok, it’s okay. It’s okay its okay you’re okay” I call myself sweetheart, honey, my love, darling. And then sometimes it’s the opposite; I curse out this god-forsaken body with a string of uncreative obscenities.

And my never-ending question is How HOW can non-existent muscles cause this much suffering? There’s nothing even there to see (ie. paper doll), let alone spasm to the point of my bones feeling like their going to break. It feels like my body is trying to kill me, again. Cancer didn’t seem to work, so here’s the next attempt. Or perhaps my muscles are in mutiny and seeking to prove that they still exist in spite of me. I don’t know.

Well, finally after about three weeks of these shockingly quick-changing unforgiving circumstances and my mental state spinning out: I had one night of spasms so horrific, lasting so long and attacking new and larger muscle groups that I had no way of calming down or stretching to release, my parents took me to the ER. Of course as soon as we get to the ER my body had relaxed, as is the way of things (I can’t really move when a spasm hits, so we had to wait almost a half-hour in order to get me to the car). I wasn’t upset by this, I mean, not really because I didn’t want to be in pain any more. But it’s also difficult to explain to someone that, just a few short moments ago I was in the most intense pain I have ever experienced, by way of a now pacified and complete hypocrite of a body. The only thing I had to show for it was that I was totally exhausted. The fatigue following these episodes is obscene. They nodded. They took my blood. And my white count was high. Read: infection.

They did a chest X-Ray which revealed that I had pneumonia. I was admitted to the hospital that night and put on Big Gun antibiotics to knock it out (TMI alert it makes your pee smell terrible). With my still being immuno-compromised, pneumonia is nothing to mess around with. More X-Rays, more antibiotics, more nights in the hospital. What’s amazing is that I wasn’t presenting any signs or symptoms generally associated with pneumonia. Nurses and X-Ray techs kept asking me how my cough was doing, and I always had to answer them “I don’t have a cough” to which a quizzical look was always the response. Especially when follow-up questions like “Wheezing? Fever? Shortness of breath?” also got the headshake. What’s also amazing is that the muscle spasms started clearing up as the spot on my X-Ray did. They didn’t go away completely, but the regressed to about where they’d been prior to the Three Weeks of Hell. I tried to be active, walking laps around the floor- because that seems to help keep my leg spasms at bay- and sitting in a hospital bed wasn’t helping the cause.

It wasn’t until the night before I came home that we (well, my mom brilliantly sleuthed out) put together what I see as a pretty clear understanding of what had just happened to me. Why my spasms got so bad so suddenly, and conditionally why my mood spiraled out of control with it. Of course now in hindsight I do recall prior to my transplant, my doctor talking to me about chronic GvHD, and that if I did happen to have it (which was likely, given I had an 8/10 mismatched donor), that it would likely have “flare-ups” throughout my life, usually when I'd get sick. This happens because when the body gets an infection, the immune system “wakes up” (as it should) and goes to town on the infection, which causes symptoms (stuffy nose, cough, etc). At least, that’s what a proper immune system should do. In my case, because my immune system is transplanted and not my own, when it was triggered to “wake up” because I had developed pneumonia (hurrah), instead of attacking the pneumonia, my immune system got confused and started going to town on my muscles instead.

Hopefully my immune system will eventually feel “at home” in my body and not attack healthy things (like my mini muscles). The goal of this transplant is that the donor immune system will do what it’s supposed to do: keep my body free of infection, and keep cancer from returning. That’s called CURE. They say five years in remission is when cancer patients and doctors can start saying the word “Cure”. But I’m not so sure if it’s the same numerical path for me, we’ll see. The hope is to be able to get off of immuno-suppressants so that my immune system can reach it’s full potential to guard me. That may never happen, especially because I have a mismatched donor, and GvHD may be too intense (and dangerous) to ‘take the blinders off’ my immune system completely. But that’s the goal. For now, knowledge is power. Knowing and understanding what just happened to me has released some of the anxiety and depression that wrapped so tightly around me for the past month. If my muscle spasms (or my other, somewhat-less-frightening-but-still-obnoxious presentations of GvHD: so far I have five other ones) ever start to increase like they did this time around—I’ll know, I probably have an infection and my immune system just doesn’t know how to “do this” yet. The scariest part of it all (besides how bad the pain was) was not knowing why it got so bad—and that it was so suddenly and completely taking over my life for no apparent reason. Now I know.

I’m also taking other steps to build a healthier identity. It can be very disheartening when I look back over the year and it’s easy to chastise myself for not being further along than I am. I’ve fallen off the 2015 Year of Health horse a bit, but I can’t let that control me. I have to start where I am. I have begun PT for full-body reconditioning. A harrowing task, but I need to do it for my health and sanity and soul. I am starting to see a new psychiatrist and therapist closer to my home so I don’t need to drive into Boston so often. I am actively trying to gain weight (bacon). I’m doing research and learning how to be my own health-advocate (yup, even 2+ years into this thing and I’m still learning how to do this). I’ve seen a new transplant doctor at MGH for a second opinion, and he was very encouraging that we are NOT running out of options to deal with my GvHD- something that was told to me by my current team at DFCI. I am very grateful to my DFCI team and thankful for everything they’ve done for me, but I’ve had to learn that not everyone knows everything. It may appear obvious, but there you go. Lessons.

We’ve also found a clinical trial researching chronic GvHD that is recruiting new participants. It’s through the National Cancer Institute and the trial is based out of Maryland, so I hope to head down there at some point to be a part of their research. In their list of chronic GvHD symptoms, muscle spasms wasn’t even listed (my other 5 were) so I almost feel its my duty to science and other transplant patients to inform the research about this other form of GvHD #science. I know how important it is to not feel alone, and I want other patients experiencing what I’m experiencing to know that. So, to Maryland I go! I’m planning to contact them this week to start the process.

I am also drawing upon the lessons on self-care from last year, remembering what pulled me out from under last year’s depression: surrounding myself with beautiful, life affirming things: poetry and music, doing arts and projects, intentionally seeking out people and waking up earlier to catch more sunlight. Active self-care is work, but if I don’t do it, I will be doomed to the catastrophe of Winter. So I am Winterizing myself. Building a network of people I love, reconnecting with people I miss. Rilke and Rilke and Rilke. Making things with my hands when they let me, and leaving them in peace when they rebel. Allowing and reminding myself to be where I am, free of judgement and self-loathing. Stretching my muscles, watching the sky, breathing deeply. Winter, there are no strings on me.

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.