Happy Horse Manure

Today I'll clean the bathrooms. Today I'll mow the lawn. I'll take out the compost and go to the store. I'll play Minecraft and have sword fights and gun battles and snuggles and movies. I'll have a glass of wine. Tomorrow I'll catch a concert and then have some folks over.

Sometimes I read my posts and think, "Do people believe me? Do they believe that I really see everything this way, or do they think this is phony cult-of-positivity bullshit?" Heck, sometimes I wonder if life is really that good.

But it is. It really is.

Do you know what happened a year ago today? This:

I still don't know the young woman whose bone marrow cells are in that bag. I won't know her name for another year. Another year from today. I won't ever know if she saved my life. The crazy thing about my transplant is that, when I went into the hospital to go through that hell, and truly it was, I was healing. I was in full remission, and I felt great. There was no certainty that the cancer would come back without the transplant, and there is no guarantee that it won't come back having had it. The numbers favored the procedure, but we've gotten so blinded by statistics in medicine that many have lost sight of how little those numbers actually tell us about what diseases are and what makes people susceptible, or sick, or well. Cancer treatment relies heavily on prayer, and the doctors are praying as hard as everyone else. I came very, very close to not having the procedure. Closer than most people in my life know or would have wanted to know.

But I did it. In the end, I did it. I did it because I wasn't going to have all the answers ever, and so I closed my eyes and picked a door. I'm still here to tell the tale.

I know how many times I nearly died. Three. The first time was when I went into septic shock. The second time was when I had pneumonia. The third time was when I developed venal occlusive disease. Every round of chemo is a reckless dalliance with death, a brutal obliteration of the life force and then a tenterhooks tiptoe of apologies and beseechings that it will recover and forgive.

What a gift, the opportunity to experience, to know, how fine an edge is on that knife, how fragile and robust life is and how filmy the veil that sways between. And then to clean the bathroom!

For a long time after my transplant, the doctors told me not to eat uncooked foods. They told me not to clean the bathrooms, or to mow, or to vacuum. They told me not to go to stores, or concerts, or parties, or to drink wine. Every time I do one of those things, it is something I have back, something new and shiny. Every game of tag or darts or Minecraft is a second chance, a third, fourth, fifth, sixth.

Every pile of manure sits atop a vein of gold. Every shovelful I take digs down to diamonds.

Happy Rebirthday to me!

White Knuckles

Sometimes the walk is longer than the pier

Things don't happen for a reason. Rather, things happen, and then the story I tell becomes the story of my life, and the gorgeous tapestry that materializes is woven of all the threads. It is not that there is a reason, but rather that every moment can be part of the journey to my higher self. In looking backwards I must guard against confusing causality and consequence.

I crowed a few weeks ago about my excellent healing powers, and then had to eat that crow when I went under with an ear infection. I'm on antibiotics and they are working well, but I had a few moments when I was trying to get over it on my own that I got pretty scared. I wondered where the razor's edge is, whether I am more likely than anyone else to slip from superficial infection to fatal brain inflammation.

As I posted in "Are You Listening," my dynamic with my doctors is sometimes a lonely one. Because I do not feel that they are necessarily on my side, in the most important way, I don't always believe that I can trust their advice. Maybe it is because they have gotten used to death. It seems to me that, while they want me to do well, the transplant doctors would rather have me feel poorly for reasons that fit their ideology than to feel well outside their box.

The suspicion that doctors, especially in research institutions, suffer from a profound level of confirmation bias is borne out by the recent statements of the editors of The Lancet and the New England Journal of Medicine that much medical scientific research is skewed and inaccurate due to myriad conflicts of interest. This is a radical assertion, but the sources are well-positioned to know and history supports the thesis. Once something is an institution, perhaps it is inherently corrupted. The razor's edge is not necessarily a bad place to be.

I don't mind that, really. I expect doctors to be human. I expect politicians to be human, as well as every other human. What I resent is when humans attempt to usurp to themselves super-human personas as keepers of the gates, superior beings who are more capable than others of acting outside of self-interest. An expert is a librarian, calling on an advanced set of tools for presenting the most current information, but they are not always honest with themselves about their filters or limitations. It is difficult to be. Of course, they are perfectly willing to admit to fallibility when called out or caught out, but there is a difference between the silver-tongue that speaks the right words and the heart that is humble.

Humility is a hard thing, too. A person requires a shell to be in the world, something to protect against broken nakedness, and yet I cannot connect, cannot grow, cannot live and die having been in the world as the peace I wish to see without some essential vulnerability that makes me human, and real, and authentic.

I found myself naked, and shaking with joy, one morning. I found that the fear had fallen away. It was as if my ego had shattered and turned into a million prisms. I don't quite know what happened, but I know it happened because my ear was exploding. It would be a mistake to say that my ear had to explode for my ego to splinter, and yet it is accurate to say that the shards of my former suffering have become jewels because my ear exploded.

There is no reason life has to be hard, but sometimes it is.

I was talking to a friend at a party the other day. She is recently divorced, and it has been very difficult. During yoga class, she was doing a perfect head stand, and her instructor came over and said, "When are you going to stop white-knuckling your life?" "But it's a perfect head stand!" she thought. The implication, of course, is that one should just stop clinging, stop hanging on, stop white-knuckling.

Nice work if you can get it.

Sometimes I need to white-knuckle. The trick is to hold the right handle bars, to close that fist around the right thing. It's true that I can make myself crazy, and sick, by clinging desperately to fear, to anxiety, to blame and anger and desire. There is something to grab, though, and hold as tightly as I can. I can trust. I can trust until my teeth rattle. I can trust that the tapestry is weaving itself.

Wallace's Prayer

Every night, Wallace tucks me into bed with this prayer:

Promise nothing bad or scary is going to happen to any of us tonight?
Pinky swear?
Nothing is in this house or is going to be in this house?
Any sounds I hear aren't going to be bad or scary?
It's going to be absolutely fine?
This is the safest place on Earth tonight?
My entire family is going to be perfectly safe and well?
It's going to be absolutely fine?
Okay Mom, Good night, I love you.

And I can answer yes.

I can answer yes.

Let that sink in.

I can answer yes.

Are You Listening?

Yesterday, I met with my general practitioner about Hashimoto's Disease. I talk to a lot of medical and health professionals. I have an oncologist, a nurse, and a homeopath in Portland, an acupuncturist, a chiropractor, and an osteopath in Bath, a transplant medical doctor and a nurse in Boston. Those are the regulars. There are others on occasion, but those are the ones I talk to routinely.

I feel like they really get it right with the doctor's office aesthetic, you know?

So anyway, yesterday. My blood pressure tends to run low, as does my body temperature. This is not a good thing, although the opposite symptoms get the most press. What you want is normal. When I had my blood pressure measured at the office yesterday, it was completely normal. This is unusual for me.

When Dr. Fredericks asked me how I was doing, I told her that my blood pressure was surprisingly normal, and that I was feeling really good. I am aware of the dietary triggers for auto-immune disorders, the key ones being dairy products and wheat, and told her that I find that by steering clear of those I avoid most symptoms. I also said that I wondered if the iodine was contributing to normalized blood pressure, as many say it does (or rather that a deficiency, which causes a malfunctioning thyroid among other things, can lead to low blood pressure).

She just listened, respectfully. She didn't act like she already knew all about it, or get that glazed look in her eye that says, "Uh oh, an informed patient, *snort*," or warn me to be careful with supplements, or dismiss my dietary changes as faddish. She said, "It sounds like that is working for you. Maybe that is what you need." Which is what you say to someone, after you listen to them. Why is this so hard for so many doctors to understand?

The situation with my thyroid is that a routine test indicated Hashimoto's Disease, which is a type of auto-immune hypothyroidism. There's no way to know how long I have had this, but we did a thyroid panel in the fall of 2013 and it came back normal. Hormone testing is an inexact science, because hormones fluctuate all the time and normal ranges differ from doctor to doctor. For me, the important part is that I don't have any symptoms of hypothyroidism, such as excessive fatigue or unexplained weight gain; in general I feel quite good. But you don't really care about my thyroid, and that's not main point of this post.

When I got this diagnosis, I did what I always do with new medical information: I started to do research. I searched around the web for primary and secondary sources on the relationship between bone marrow transplant and thyroid, and about thyroid dysfunction in general. I found online communities of people who have had these diagnoses, and read about different experiences with treatment. I pondered the nature of my experiences for keys to why I might have this condition. In this case, it is all pretty straightforward: my body is integrating a donor immune system which is bound to trigger occasional auto-immune response, and I've been brutally poisoned by medication. Because I reject the PANIC AND MEDICATE zeitgest of most conventional allopathic channels, I gently pushed aside the cannon of their initial recommendations to find gentler options as a first resort. Much that I read pointed to diet and a supplement program called Dr. Brownstein's iodine protocol. There are also some intriguing results with Low-Dose Naltrexone therapy.

When I go to Boston, I know how good I look. I know how good I feel. And I know why, in part. There is luck involved; do not mistake my confidence for smugness. A person can do everything right and still be sick. But if a person does everything right and gets better, it is probably worth taking into consideration what they have done. When I go to Boston I try to tell them, sometimes, what I am doing. My skin is clear, my sleep is good. I tell them about what I am eating, what foods make it better and what make it worse, what supplements seem to make a difference. Sometimes I share with them what I am learning about some of the critical mineral deficiencies that many Americans have that contribute to disease, like magnesium and iodine, and why the serum tests we typically use to analyze those levels might not be as meaningful as other tests that people have developed who have made whole careers of understanding the importance of just these few discrete factors. If I get a rash and they give me a drug and the rash disappears, they credit the drug. What about when I get abnormal markers that get better without medication, but with active effort on my part? Should that merit attention?

When I am sleeping beautifully while so many transplant patients are still struggling, when my hair is thick and soft, when I have the energy and the immune system strength despite being on immuno-suppressive drugs to participate fully in my kids' lives and even get a minor cold and be less sick, for a shorter duration, than the immuno-intact people around me, I might suffer the delusion that the doctors would want to know what I am doing that might help other patients. When I read the bulky meta-analysis of the administration of vaccines to post-transplant patients and conclude that there is not sufficient support for the practice in all situations, I could be forgiven for thinking they would be interested.

Alas, Dr. Alyea is not, and I think he is one of the better ones (I think the nurse is more sympathetic, but she has to walk a fine line). He gets that glazed over, slightly defensive, here-we-go-again posture, offers some bromides and some cautions and a little undocumented fear-mongering (I've asked for these documents, but I never see them, so perhaps they are just anecdotes, and OMG WE CAN'T HAVE ANECDOTES!!! Unless they support the doctor's case...).

In short, he doesn't listen. As a result, I don't trust him as much. I am more cautious with his recommendations. I don't feel that we are really a team; I'm pretty confident that he sees himself as my boss, whereas I see him as a paid consultant.

Many times on this blog I have sung my praises of Roger Inhorn, who is the head of oncology at Mercy Hospital. Roger really listens. He listens as if I have something to say that is true about me and my body. He might not think it is true for everyone else, but he will say (as does my GP, and all my nurses), "No one knows your body better than you do." Ted doesn't say this. I am pretty confident he thinks he knows better.

Because of the way Roger listens, and responds ("This has to be something you feel good about doing. If you don't want to do this, I'd like to be your partner in doing something else."), I listen to him. His recommendations carry more weight. When he tells me an anecdote, he tells me it is an anecdote: his clinical observation from years of practice. He doesn't pretend to know anything he doesn't know, and he doesn't dismiss the idea that there are things he does not know that could make him a better doctor.

Having my ideas challenged is a GIFT to me. My ego will always be there to tell me I'm already right, that I already know, that no one can tell me anything. My ego will always be in my way. Maturity of intellect is in being able to separate an idea from my sense of self-worth, in being able to assess new information and arguments and refine my thoughts without being defensive or broken. A tree can sway in the wind and come back stronger, with the same roots in the same spot but a more complex and flexible fiber of being.

Are you listening? Am I?

What Emerges

I am not going to write a post about spring. No metaphors of emergence and renewal couched in the language of bursting blossoms shall issue from my keyboard. (Julian Jaynes argues that all language is metaphor, which makes this whole thing very difficult, but work with me).

Last week I went to an arcade. I went to an arcade, mini-golf, go-kart fun park, to be exact. It was the middle of a weekday that threatened rain, and was not particularly crowded. At noon, I drove over to a strip mall to eat a bowl of soup. I even had half a glass of wine with dinner (don't tell Dr. Alyea!). I was in South Carolina, where there is much in full flower and...d'oh! Anyway.

I was not wearing gloves. 

I was not wearing a mask.

I was not reading the labels and harassing the staff about every ingredient in the soup.

I was not tired, or wired, or sore, or hungry.

I was...fine. Normal. Totally normal. Normal like other people think of normal.

Last year in mid-April I was planning to begin my transplant conditioning in May. My friend Dave had just died from complications related to leukemia post-transplant. My donor had not yet suffered the injury that would put me through another round of consolidation chemo that would damage my heart and lungs and potentially render me unfit for treatment. The weather was, as now, just starting to get warm, and I was ferociously recovering from my first two rounds of treatment; attempting to gain weight and muscle mass, bolster my liver and kidneys and immune system, find my center, clear my mind.


I was not going to arcades.


Everyone tells you, everyone knows, that life is just a series of moments. It is so very easy to forget that, though. Perhaps some of my decisions seem strange from some perspectives; they are certainly not staid and conservative choices. I plan to live a very, very long time, but every chance I get to do better right now, to be more connected to the people in my life and less concerned with whether it matters that Lysander is eating nothing but hotdogs or Wallace is staying up all night reading Calvin and Hobbes, is a chance I have to take.


My thyroid is acting up, I guess I have Hashimoto's Thyroiditis now; an auto-immune disorder in which the thyroid under-performs and my immune system attacks the gland. When the doctors told me that initially I was very frustrated. I wanted to be on a linear path to complete health. What is complete health, though? Was I completely healthy in my youth, in my twenties, when I didn't have what I have now? I may have been through cancer and ancillary entertainment since then, but my life is so rich, and the terrain of my body is made of wisdom and endurance borne of blood and sweat and tears. I have never been so healthy, so strong, so at home.


Look backwards. Go be in those places in your memory, and enjoy them, and relive them. But don't ever regret the loss of them, for they are still there, and what is happening now is worth living. Find a Go-Kart track.

 (Check out my renewed daily documentation project over at My Time Lapse Life)

Hospital Anarchy

Anarchy has a bad name. This is because violent political movements engaging in anti-social behaviors have adopted and corrupted the term, primarily. For this and other reasons, I avoid labels for people, including myself; there are many connotations, contortions and convolutions under any ideological or behavioral umbrella, and the terms become meaningless or misconstrued. The words themselves can have meaning in the abstract, and to that point I quote the Merriam Webster Dictionary Online definition of an anarchist as "a person who rebels against any authority, established order, or ruling power."1 

As I stated above, I try not to apply labels to individuals. Nonetheless, that's a pretty good descriptor for me. I admit it: I have a problem with authority. I always have. Any authority that is not based on purely cooperative, non-coercive dynamics faces a lot of hurdles to gain my acceptance. I could go on and on about where that applies and how far it goes, but that isn't my point here, today. Writing about big philosophical constructs gets unwieldy and impersonal, and there are enough folks out there in the blogosphere taking on those projects.

My purpose here is to talk about what happens when a person who intuitively rejects authority (yeah, yeah, okay, even viscerally and irrationally, at times:)) chooses to submit to the soft tyranny of doctors, hospitals, and the mainstream medical system.

I'm sorry, I could not resist. Clearly.

When the doctor told me that I had leukemia, and that I should check into the hospital immediately for chemotherapy, I wasn't ready to hear all that. Who would be? In so much of life, but particularly within the allopathic paradigm, the default position seems to be "There's NO TIME! We must act NOW!" Fortunately, I was ready for that. A friend who left the nursing profession many years ago had given me a mantra: "There is time. There is always time." I might not have been ready for the news, but I had that tool, and I used it. I told the doctor the truth: I wasn't ready to commit to conventional treatment. I needed to think about my options. I needed Time. While I could tell he was not completely comfortable with that response, he respected it. He respected me.

In a field where so many oncologists might say there isn't time, that I am wrong and foolish and risking my life, Dr. Roger Inhorn did the best, maybe the only thing, that could have set me on my best path: he honored my need for time. When I called him in tears one night and said I did not want to check in the next morning, he said okay. He said that he did not want me to go through any treatment that I wasn't comfortable with. He did not rely on his assumed authority. There I was, an anti-authoritarian with nothing to push against:)

Some people like to be told what to do. I have observed this. I have also observed that many people do NOT like to be told what to do. I don't know which is the majority.

(Permit me to digress for a moment. Remember the blue dress with the black trim, or the white dress with the gold trim?

If you missed the blue dress brouhaha, I refer you to this story Blue Dress. On the internet, arguments raged about what the dress looked like, and then arguments raged about whether anyone should care about what the dress looked like, and then arguments raged about self-righteous posing and taste arbitration, and then...well, anyway.

Me, I loved the blue dress debate. I saw the dress as white and gold, because my brain made assumptions and adjusted the image. Other people saw something else because their brains made different assumptions. The necessary information appeared to be in the picture, but it was not. Who has not been frustrated at another person's erroneous insistence on something that they know to be otherwise? But wait, do they? Is it possible that there are some things we cannot know to be true or untrue, because the filters through which we process the data are fundamental, axiomatic, and, for us, essential and true? The dress is about the importance, and malleability, of perception.)

What inspired this digression, you might ask. I do not like to be told what to do. I do not like it so fundamentally, at the kernel of my being, that I could readily believe that no one likes being told what to do. How easy it would be to be like the protagonist in Vonnegut's "Player Piano," evangelically confident that, if only people could be shown the way out, they would take it! 
 
Some people do like being told what to do, though. They like the security, they feel more comfortable, they appreciate the rules. For me to assume that everyone wants what I want in life, or operates from the same principles, or should, is arrogant and aggressive. So I don't. For some reason, the blue dress illustrated this for me where my prior analyses had failed.

The week I didn't go to the hospital, I pored over websites and research reports, peppered health forums with questions, paced around, and pulled my hair out. What I discovered was that, if I wanted to try to heal myself from AML without pharmaceuticals, I was going to have to go it alone, because I could not find anyone, anywhere, who had done it. I felt terrible. I had a very young child and an infant, and a husband working full time outside of the home. I did not want to go it alone. I wanted someone to hold my hand and run the show. I wanted to surrender, to submit to someone else's authority.
 
And so I did.

That is the most important element to the story. I chose to undergo treatment, and take the doctors' advice, intentionally and with consideration for what it meant to me emotionally, physically and intellectually to do so. Coercive force generates an opposite emotional reaction, I find - pushing against, bullying, forbidding, and generally giving a behavior or attitude huge amounts of psychic power seems to beget more of it. Nothing seems to be more effective at making something potent, dangerous, and pervasive than declaring war on it. Consent and compassion have the opposite effect, I've found; they encourage cooperation and partnership and positive outcomes.

Since I already knew that the doctors weren't magic, and that they weren't in control of the outcome, and I chose in handing myself over to their care to accept that I wasn't in control of the outcome, I found myself free to live with the uncertainty, or perhaps with the certainty of lack of control. Questioning authority is essential to critical thinking and examined living, but questioning ourselves on our own assumptions is equally important. We must not allow an internal tyrant to arise, preventing us from finding the peaceful path of accepting life's vagaries and lack of absolutes.

Without the power struggle, I am able to be a participant, and occasionally a dissident, in my doctors' care plan, baggage-free. My transplant team is stiffer than my oncology team, and they have to be, but I roll with it, and roll my eyes when I have to. I have broken the rules, I won't deny it. I have made educated decisions about diet and medication that contradict their edicts. My doctors and nurses know I don't do anything just because I'm told to; they know I need useful facts and that I am going to make my own decisions. For my part, I assume we are in this together, as allies. An adversarial and combative attitude with anyone is the best way not to make my case accessible and appealing to that person.

So what happens to an anarchist in the hospital? She becomes a better anarchist:) She becomes more aware of her filters. She becomes better able to trust the parts of her that allow others to help, and permits them to be right; better able to hear the internal chorus and pick which voices to amplify, and re-examine her convictions. She sees that asking for help, and receiving help, is not weakness.

Well how about that? This post is about being a parent, too:)

Where Were You Then?

I am working on a book. It is a memoir, of sorts, and it begins some time in 2010. To write a book, one needs an outline. Well, if one is me, one needs an outline. To write an outline, I need to know what my point is, and what I want to use to build that point.

Perhaps I have mentioned that I am not good at getting to the point?

Look! It's a Christmas Unamog! What were we talking about?

Another problem is that I don't have a huge amount of time for writing. There are these little people, and my job is helping them make the world their own, and I take that pretty seriously. Right now they are giggling hysterically in the other room and whenever I go in there they look at me funny, so I figured I would mind my own business and do a little writing. 

The other day, I went for a walk and I took a picture inside this old stump. It's rare to see the inside of a tree this way, with nothing left of its history except the most recent years. I have been alive for all the time that this tree documents. What have I been doing with it?

 

I gave myself an exercise, to try to find a way to figure out what is supposed to be in this book. I want to give this exercise to you, because it's amazing.

Pick a moment in your past right before a major event in your life. Maybe it is a joyful experience, maybe it is a trauma, maybe it is both. Joy and true happiness are deep, sublime things. They are awesome. They contain darkness, but are triumphant with light. Like the pain of childbirth, the pain and suffering are easy to forget, to diminish in our memory, when we have turned everything to light. While this is wonderful for survival, it can enable us to minimize our own power and experience as easy, manageable, since we have managed it, after all.

Give your past, especially the painful parts, an opportunity to be big and proud. Let the light shine on it. Pick that point, and start a timeline. Be very diligent about keeping it chronological. Go back in time, to each of the moments between then and now, and write whatever comes into your mind. Allow yourself to feel how you felt, to be in your mind before the liminal events, during them, after them. Give all those moments their due. Expand them, explore them, find any grieving, any forgiving, any pleasure, any grace that you have forgotten.

You have everything you need.

How Could I Forget A Love Song?

How could I forget a love song, the love song, for the last post? Here it is.

Flying Dreams

John dreams about flying. The closest he got as a child was a glider ride. For a while he was a skier. In college, he got into skydiving. Also there was surfing. Then he took up sailing. Now he is excited about planes, building a flight simulator computer and listening to flying podcasts and studying to get his pilot's license. He is a craftsman, an engineer, an intellectual and an artist. He is a father.

He is a husband.

We fell in love because of music, whiskey, and absurdity. We stayed together because the other person was the better person, the wiser person, the cooler person, the person who makes us who we want to be.

I remember crying one morning, fifteen years ago, because I love him so much. I didn't know my heart could hold so much. Two children later, I am still finding room.

What do we sign up for in a relationship? Do we acknowledge the work of love, the difference between a parallel path and one entwined?

There was a time when he was very depressed, at sea in the transition between a world constructed of other people's promises and the life we create for ourselves, when he was selling coffee or cameras, and I carried him. I asked myself, am I staying because I have to, or because I choose to? Do I need this, or do I want it? When I had the answers, I knew I could marry him. And so I did. 

Then I was depressed, in a job I hated, knowing what I needed to do and not sure what would happen to my life if I did it. He carried me. 

When I was lost in the dark, and couldn't see the path forward, when Wallace was little and there was no money and no work, all I could do was trust, white-knuckled, teeth-clenching trust. And he was right, like he always is. Everything was okay.

The first night Lysander had to sleep without me, without nursing, John held him, fed him from a bottle the milk a friend had donated. There wasn't enough. Everyone was hungry, tired, scared. I didn't know.

The first weekend I was in the hospital, one of John's best friends came to stay with him, to play guitar with him and hold him while I he cried. I didn't know.

I said I wanted to sail the boat to North Carolina. He said "okay." I said I wanted to turn around and go home. He said, "okay."

One afternoon I awoke in a bed in Mercy Hospital, my lungs full of fluid, so weak I could hardly walk and so sick I could barely find myself, and he was there, sitting at the foot of the bed, reading a book. I cried then, too.

In the forty days I was in the hospital in Boston, he repaired, repainted, re-organized, deep-cleaned, discarded, and generally overhauled our home. All I had to do was stay alive.

When I didn't want to be touched, when I wondered if I would ever want anyone to touch me again, he waited, as near and as far as I needed him to be.

Being the caregiver seems much harder than being the patient. The patient has to do the work of illness, but the caregiver has to watch the work of illness and feel powerless.

This morning it was negative two degrees Fahrenheit, and he left for the site, over an hour away, to stand on a hill in the wind and raise a frame. There was a winter when he would drive an hour every morning, pilot a Whaler through the frozen spray of Casco Bay to shovel off a roof, and then spend the day standing on it and working. He does this for us, for me, for the kids, and for his dreams. Dreams of flying, of winters in the tropics, of warm oceans.

Sometimes his wings are curled around me. Sometimes they carry me at thirty thousand feet. Sometimes we are just skimming the ground. Always, he has had them. This is for the man who can fly, the steady hand on the tiller, the reader of wind.

Curriculum vitae

If I have applied to you for employment, don't read this post.


This is my eleventh or twelfth job, I think. I used to clean my dad's office. I spent the whole time telling him when I was going to stop working for him. Quitting, in other words. When I was fourteen I got a job as a library page. The library page job was my first exposure to professional politics, and dreary, windowless break rooms, and doing boring stuff because someone else is paying you to do boring stuff, and suspecting that I was too smart for it. And not yet knowing that no one pays you to be smart, or cares if you're smart, in the workplace. Smarts are not the point. If you have the right kind of smarts, a combination of political smarts and problem-solving smarts and willingness-to-devote-hours-to-bullshit smarts, you can go far. If a solid part of your smarts stems from suspicion of authority, dogma, and consensus, you better develop a feasible plan for self-employment. If you think you are too smart to get over yourself and just do the work that needs doing, you might be a little immature. Not that I speak from experience.

My favorite official part of the job was restocking storage books in the dusty catacombs. My real favorite part of the job was hiding in the 700 stacks and reading craft books about making miniature dollhouse furnishings. (I'm pretty good with the ol' Dewey decimel system, let me tell you.) The bulk of my job was straightening the large print Westerns in the fiction stacks. Those are really popular with the big font crowd. I got pretty much very nearly fired from that job for being arrogant, which I was. (Turns out that it does not behoove you to believe yourself sharper than your direct supervisor, especially when you were hired, not by her, but by her boss. But I digress).

After that I was a clerk in a candy shop (where I ate A LOT of roasted cashews and "accidentally" punctured holes in the maple candy boxes so that they would be unfit for sale and become break room fare). My bosses were a couple of old Greeks who played chess. Sometimes one of my coworkers would come in on acid and I would cover for her. Hawking artificially colored and flavored "fruit" slices to people is surreal enough without LSD, and there isn't much demand for someone to sit in the back and count the cashews.

I did a couple of summers as an assistant to the assistant of the community education office at a local technical college. That involved accepting checks and entering data into a crotchety DOS database. One time my old third grade teacher came in with her daughter. The experience of having me as a student was apparently sufficiently scarring for her that fifteen years was not enough to wash away the pain. I hung up the phone and heard her say, slowly and sinisterly, "I'd remember That.Voice.Anywhere." Yeah, well, bitch, Modern Egypt? What the hell kind of third grader wants to write that report? 

The Star Island clown-car-of-comedic-job performances finds me slacking to an extent heretofore unattainable, although I actually did lots of work and learned a lot. But I also did lots of slacking. And conflicting with the boss, of course, because...well, because. I think I very nearly got fired three years in a row. There were some traumatic incidents involving the overuse of cilantro and a lack of serving spoons and my perverse insistence on listening to the same record at top volume for an hour every evening, very nearly backing a truck off a pier and causing a large (but contained, don't panic) diesel spill.

Let us not forget the barista-and-sandwich-assembling gig. With my native flair for psychodrama, I managed to get embroiled in all sorts of shenanigans. That one culminated in the gentle "suggestion" that I take some time off after failing to put turkey in the turkey sandwiches five times. That poor woman, and her damn turkey sandwiches. Sliced turkey is not turkey, anyway; I don't care what anyone says.
 
There was absolutely no comedy involved in my job at the recycling center at UNH. That was a sweet job.

I nearly forgot the assistant financial advisor job. One does not cold call.

Then I landed an internship at a mutual fund company.

I had wanted to work on Wall St. since I was in third grade (when a series of unfortunate events led me to conclude that I wanted nothing to do with NASA or flying or engineering). I was genuinely fascinated by economics, and believed the stock market to be a fairly pure demonstration of economic mechanisms (which it is, to be sure, but not the true free market mechanisms I was interested in, and therein lies another diversion in the frantic trajectories of my intellectual evolution). Not knowing the difference, as a kid, between the sell-side and the buy-side, I loved to imagine myself as the analysts on the investment-advising television shows. Really, I did.

When I actually got a job as an equity analyst, I was sure I was on my way. I was determined to be good at it, to be focused, diligent, unassuming, effective, and subservient. That last one is a big one, in business. I bought an expensive suit after being told on an "networking interview" (which turns out to be shorthand for bullshit ego-stroking of some jerk on Wall St. who just wants to show me the fancy view from his corner office and make sure I understand the hierarchy of things) that my wardrobe was insufficient. I still cringe when I think about the way he called out some woman stuffed into a fancy pink suit as an example of appropriate attire. I learned a few things about the role of women on Wall St. that day, you can be sure.

About that subservience, though. I am not good at it. I tried. I did try. Only once did I shout "FUCK YOU!" at a slimy, sneering, pompous-ass colleague. Really, only once, and everyone agreed he deserved it. I also learned through the grapevine that my boss thought I had "scolded" him about something. What can I say? I have a naturally commanding, authoritative tone, which is not a tone that a junior employee can use with a senior employee. I'm working on it. Sort of. While I did not technically get fired from that job, either (I've never actually been fired, I don't think), I got sidelined and I knew it. It was easy to walk away from everything but the money, and I'm glad I did because I never got to the point where I made enough to stay.

Having made the decision to leave finance behind, I worked for a couple of plant nurseries, and a few gardeners, and I did some freelancing.

When Wallace was born, I was still working as a greenhouse manager and a gardener. I knew all about babies, hippie-style, of course: you just put them on your back and they smile and do whatever you do.

Well, not all of them. Wallace, for one, did not. He did not want to rake, or weed, or prune. He did not want to play on a blanket while I did those things. He wanted me to engage with him. And so, since I wanted to be a mother more than I wanted to be a gardener, and it was impossible to actively do both at the same time, I made my choice. 

I don't know what makes something a calling. Is it something that comes naturally? Do you get better at it if you work harder at it? Does every other possibility seem a poor substitute? Would you do it anyway, even if it didn't pay? Does it seem like something you can't not do? That describes the experience of motherhood for me. If I am going to do something, I want to do that thing. I don't want to balance it with other things; I want that one focus to cause all my cylinders to fire. When I realized that I was a mother, and there was no going back, I decided to be consciously, actively, intentionally, the best damn mother I could be. No one was going to fire me, and I couldn't quit. And I didn't want to, and I never have. I got really lucky, I guess. The one thing I couldn't not do turned out to be the one thing I couldn't not do anyway.

It is not, however, the only thing that I feel called to do. I write. I can't not write. I've always written. I don't know if I will ever produce a kind of writing that anyone else wants to pay for, and that's okay. Don't misunderstand me; if I can find a meaningful way to write AND get paid, I will, but whether or not I write doesn't depend on whether or not I get paid. I observe, I think, I analyze. It may be that no one else ever needs my abilities to do these things, but I know I can't stop doing them.

Some people wake up in the morning and do what they love, and someone else values the product enough to pay for it. Some people seem to fall into opportunities, to find their calling knocking at the door. Eventually, that's what happened to me. Well, at least the calling part. No one seems interested in paying for the product yet. But, like the lady says, I'm gonna do it anyway, even if it doesn't pay.

What, you may be asking, is the point of this post. People have been asking me my point as long as I can remember. Perhaps I'm not as concise as I could be. If, by chance, I have applied to you for employment and you read this post anyway, the point is this: There may be a straight path to one's purpose in life, but I sure haven't found it. I know now that it is not always easy to do a good job, and it isn't always necessary for the job to be worth doing, to be worth doing right. Sometimes you just do the damn job. But once I know  what calls to me, everything I do is about that. 

As I set out from this crossroads, six months after transplant, and choose which direction to go, life has never been clearer. It has never made more sense. I will build it, and they will come. As to what "it" is, let me get back to you.

It's My Birthday!

It's my birthday. One of them, anyway. The dragon gets one, too, but that's not until July. As is the case every four years, my birthday falls on Thanksgiving, which means I get turkey and cake. A couple years ago I started writing a post on Facebook on my birthday so that anyone wishing to acknowledge the occasion could just click “like” and be spared any awkward effort of trying to think of something clever to write on the “wall” of a person they have most likely not seen in years, don't know very well, or have never actually met in real life. Such is the nature of social media. I'm okay with that.


The custom this time of year is to write about things for which you are grateful. In the first draft of this post I wandered off on a digressive rant about genocide and economics at this point. No one needs that from me, if anyone even needs it at all. If you are interested in reading about British colonial cruelty, genocide, religious fanaticism and the folly of collectivist agricultural policies, Google is there. You don't need that today. You need a novel take on gratitude.


Life threatening illness is one of those things that makes life really simple. All your priorities become very clear. The people you love, the people who build you up, the emotional requirements of survival: these are what move to the foreground. The physical demands of your body and the illness are consuming; without the cushion of your health to absorb assaults, you must put yourself in the middle of the universe and make everything else revolve around you. That you are not in control becomes very clear, but so does what you do have an influence over. You know what you miss, and what you don't, when you can't do very much. The muse is really loud, the path is really clear.


Then a funny thing happens during recovery, or at least during my own. All that stuff that seemed so simple, whether important or inconsequential, starts to feel complicated again. Where there was in focus and out of focus, now there is soft focus, and then everything gets crisp and urgent again. Life returns to...normal. The difference, though, is that it's easy to see that you are choosing. You can see that you are deciding what is or isn't a priority, whether you realize it or not. You have the chance to say “The universe has handed me a moment in which to redefine myself. What matters to me? Who do I want to be, starting right now?” I know that sounds wonderful and amazing, and it is. But it is also traumatic and terrifying. It is a rebirth, yes, but it is also a re-adolescence, with all the struggle and drama of that liminal passage of self-realization.


Today, I turn 38 years old. My relationship with my husband is almost 15. My marriage is nine. My children are eight and four. There is a lot on my horizon. At some point in the next six months, I will be able to resume normal activities with other people (as opposed to, you know, wearing a surgical mask into the bank. That took some explaining). This means that anything I want to do, I can do, at least in theory. In other words, I am out of excuses.


The second big thing that is happening is that the “mom” part of my stay-at-home-mom job description is being redefined by my customer base, who don't need, or want, my undivided attention all day. In fact, these days I often find that, once everyone has had breakfast and the dishes are done, I'm not entirely sure what to do with myself until lunch. The third thing is that we are rapidly outgrowing our little house, at least in terms of space for John's business or any prospect of my developing one, which means that we have to start planning for a major investment some time soon.


How do I manage my present, when the certainty of sixty years of future no longer feels guaranteed? It's not that I expect to die young, indeed I expect the opposite, but the importance of living young comes into greater relief after cancer. I don't want to waste time when I know I feel good, because I know how easy it is to start feeling really, really bad.


What does all this have to do with gratitude? Remember that part about adolescence? There is a big difference, too. Serious illness can teach you that you have to take care of yourself, focus on yourself, make space for yourself. At fourteen, I felt completely alienated from myself, adrift in a foreign culture I could not navigate. At 38, I know that I am responsible for taking care of me, and that the world will come to me if I give it a soft and solid place to land. I have spent most of my adult life honing the ability to hear and interpret the muse. When I act, whether buying a brokedown palace, quitting a soul-destroying job, choosing to stay home with my kids, selling a house, buying a huge boat, or whatever harebrained scheme comes next, I know that I am doing it because it is exactly the right thing for me, right now. I don't seek balance. If something feels worth doing, I'm going to do it like I mean it. Because I do. I'm so grateful that my experience with leukemia and transplant has made it so easy to stand on the ledge and look out over the landscape and say, “Who I want to be starts RIGHT NOW!” You don't need to get sick to do that. I just got lucky.

What's Natural?

I was watching my son play soccer the other day. He is not a natural. Field position, speed, initiative and attack do not come to him intuitively on the field. When he gets to the ball, I can see him thinking through the things he has been told about what to do next. Sometimes it takes me back to my own childhood, to the trauma of not understanding the game and not wanting to be there, on the field, on the spot. There is a big difference, though. He does want to be there. He asks to play. He's chatty and bouncy on the field (to the frustrated looks from some of his fellow players, who would like him to get his head in the game or at least know where the ball is). I have never insisted that he play soccer, or any other sport. I make it his choice, and thus far, he chooses to play. If he chooses to stop I might get my fall Saturday mornings back.

What does it mean to be a natural at something? More importantly, what does it mean to not be a natural, and do it anyway? I play the banjo. I sing. I sing harmony. I love the banjo. I love singing. I am not a natural. While I have gotten much, much better over the years, I have to work really hard at it and I am constantly coming up against limits in my ability.  There are lots of places where I am going to have to work harder than others to improve, and levels I probably won't ever get to.

I didn't start playing music for myself until a few years ago. My life has always been full of music, but in seven years of playing the piano I never quite got it. I guess I wasn't ready, or it was the wrong instrument, or the wrong teachers. No one introduced me to the idea of playing music as a casual social activity, separate from standard notation and scales. When I was a teenager and people I admired played music for fun, I felt like I had already missed my window and was destined to be a consumer forever. I felt left out. As a young adult, I was envious of the people in my life who would sit and play music together, but it still took me years to start to believe that I could participate. Sometimes I wonder where I would be as a player if I had let myself take it up as a teen and be bad at first; what would it have been like to learn to do something for the joy of it, without feeling self-conscious about my competence? I still struggle with that question.

These days, it feels like everyone wants to be a tech entrepreneur. Certainly, if you are a tech entrepreneur you are more successful than everyone else because you were making millions in your twenties. If you lack aptitude and interest in programming, you are a has-been in the "old" economy. Computer technology never spoke to me, though. I am happy enough to use it, but, like a car, when I can't get it to do what I need it to do then I find an expert and put it in their hands. I keep thinking that I want to learn more about computers, I even went so far as to buy a pc instead of a mac so that I could (haha) learn open source operating systems. Alas, mostly I just get frustrated when it acts like a creaky old pc and search the internet in hopes that someone else can solve my problem.

Given that, I am unlikely to found a successful tech startup and finance my way to happiness. I often lapse into thinking that people who start businesses that gain traction in the marketplace are almost passive, or pre-ordained, as if they are struck by divine inspiration and driven by an unerring compass to navigate the vagaries of their chosen field and the market. Naturals.  I don't actually know a single person who has built a business or carved out a career that way, however. When you are passionate about something, or even just genuinely interested in it, that doesn't mean it's going to fall into your lap as soon as you start to work at it. The most natural thing, I suspect, is to make a lot of mistakes and have some successes, and hope that what works is sufficient reward and motivation to keep trying. It's about making your own luck, and knowing that you are doing what you are doing by choice; that you intend to be there. Finding the path and making the path are two parts of the same process: the process of being open to what we really want.

I don't have to be born a natural to find a path, naturally.

Too Many Apples

I ate too many apples. Really, I did. I started to feel bad, the way you do when you eat too many apples, but I kept eating them. The next day, too. I've been dreaming of apples since mid-August, when the first bland Jersey Macs come out, because I knew that I wasn't supposed to eat an apple until October 17, the one hundredth spin of the earth since my re-birthday. So on October 17, I went to the orchard and bought two bags of apples and ate them all the way home.

And here we are in the days of no counting. The dragon is an infant whose life has been counted in hours, in days, and now in months. The dragon sheds some more soft scales. I can eat almost anything I want now; my nascent immune system is functioning and I can be in some situations without a mask. (Not the farmer's market, though, and I got some pretty strange looks doing my shopping on Saturday morning in my mask and gloves. More for me. The crowd gives me plenty of space. I went to pick up Lysander at a birthday party and the birthday boy took one look at me and recoiled in terror.)

Winter is coming. It's kind of cold in here because I haven't gotten the okay to handle firewood yet, and I'm home alone. 100 days has been the goal for so long, it has taken a few days to accept that there's still more to do, still more waiting. And winter is coming. The time when everything closes in on itself a little, when there's a little less motivation to get out of bed, when everything starts a little slower. It's been winter for me for a while. I returned from North Carolina in early January, in the middle of a brutal cold snap, to go to the hospital and begin this journey. For most of a year, I've been a little more closed in on myself, working a little harder on finding the center, moving a little more slowly.

The problem with milestones is that life can become about the goals. The future can take my eyes off the present.  Having a point on the horizon to move towards can make the time pass, but it can't make the time be. What I struggle with most is seeing how I am exactly where I need to be, when where I am feels stuck. What if there is no other place to get to? What if I reach all my milestones and find out it's still just me, here, at the end of it all, and that doesn't feel like enough? What if it is up to me to actually do something about how I feel about my place in the universe?

I guess, while I'm working on that problem, I'll wait for the next milestone.

How Not To Get Eaten By Dinosaurs

We wanted to watch Jurassic Park. The kids were up for a dinosaur movie. I got a pirated copy, which was too laggy. Got a different pirated copy, also too laggy. Then I decided I would pay for it, and ordered an Amazon instant copy. After dinner we went to the computer room to watch the movie, and the door was closed. And the doorknob broke. So the door was frozen shut, with no one inside. After several attempts to break in to the room with credit cards, screwdrivers, or brute force, John had to go outside and break in through the window. This required using a paperclip to open the screen and then crawling through the half-open casement. (It also demonstrated the security of our house when the windows are open). Upon successful removal of the doorknob and mechanism from the inside, we were able to get in the room...to discover that the Amazon video buffered constantly and was too frustrating to watch.

At this point a friend suggested that Jesus did not want me to have dinosaurs.

Finally, John went to the video store and got a hard copy. It worked beautifully. The kids loved it. They've been discussing the finer points of Jurassic Park ever since.

There are a couple of lessons here. One, there are a lot of ways to approaching a problem. Two, there are times when most of them fail. Three, if you want to watch a dinosaur movie, you have to keep trying.

I'm not supposed to be worrying about the future. I can dream about it, or I can stay in the present, absolutely, but it will obstruct my healing to create any anxiety about what might be. For the first several weeks out of the hospital, I felt very antsy about how I should spend my time and what might  happen in the years to come. (I learned from my homeopath that steroids interfere with emotions in a way that can trigger these types of feelings, which helped me to let go of them as part of a passing phase in the process. Nonetheless, they felt real and I wondered how to deal with them.) But there still is some kind of future coming, and this recovery is non-linear, and there are as many types of long term outcomes as there are people who undergo transplants.

Sometimes I get frustrated. I feel pretty good, considering what I've been through, but I don't feel really good. I had withdrawal symptoms when I dropped the ativan too fast, so I have to go back on it and taper it and hope that I can normalize my sleep and be free of the drugs. I can't figure out what to eat that makes me feel well and is healing. My doctors are extremely conventional and conservative and not knowledgeable about anything outside of allopathic medicine, so they can't work with me on other approaches to my recovery. I either have to go maverick and do things I am comfortable with but know they disapprove of, or I have to forego doing things that I know will help my body. I have to take medicines that are much worse for me than they realize (not that I wouldn't have to take them anyway, but I think the doctors are a little cavalier about a year of prophylactic pharmaceuticals). I have to deal with extra fatigue and shortness of breath and other unpleasant symptoms and I can't get second opinions outside of the transplant world because it is a packaged deal.

So it's up to me to experiment, because I know that my body is unique and the one-size-fits-all approach of allopathy isn't sufficient for my recovery. But there are a lot of things to try, and some of them won't work, or they won't work all the time, or it's too soon after transplant to feel the way I want to feel all the time. Do I eat wheat, or not? Gluten, or not? Dairy, or not? What do I replace salad and sauerkraut with? How do I compensate for the fact that the doctors want me to take folic acid, which is hard on the body and may be dangerous as a supplement, or prophylactic anti-fungals, which are a neutron bomb to the microflora in the body that are responsible for, well, everything from mental health to skin texture?

There are days when I feel sorry for myself. Times when I wonder if I'll ever feel better than this, or if I'll suffer permanent setbacks as a result of this process. Moments when I don't feel grateful or joyful, just irritated. When I can't keep up with my kids during a soccer game, or even with my husband on a walk, I wonder if this is the rest of my life. It's the only one I've got, though, so I have to keep trying, stay flexible, and hope that sometimes I'll get it right, or at least right now.

What I Don't Know

I haven't followed the referendum in Scotland. I don't really know what ISIS is up to. I'm not entirely clear on Question 1. In fact, from a news-of-the-world standpoint, I am utterly uninformed.

It's self-preservation, really, but it is larger than that, too. It is possible to fill every minute of every hour with news media and analysis. It is possible to occupy the entirety of one's time with the angst of the world. Some people enjoy that, but I have discovered that I feel worse about myself and the power of peaceful interaction when I immerse myself in news.

Access to information has gone from nonexistent to tightly controlled to more loosely available to completely saturating. The old saying "If you aren't outraged, you aren't paying attention" says a lot about the level of psychic misery we think we are supposed to experience to be contributing members of society. My experience on the internet, either through Facebook, or twitter, or innumerable comment threads, is that hostility and negative energy are the driving emotions behind much public "debate." Every time I have tried to engage in these environments in a meaningful intellectual way, I have discovered that there is always someone, somewhere, that wants a fight, or a ten second hate, and that person is happy to bring a steamroller into the garden to shout and squish. Yes, it is a good exercise in not internalizing other people's anger and being mindful of one's own emotions, but it is also exhausting.

So I've dropped out. I'm looking for peace in the moments I'm in, in the human interactions where I have an influence, in dreams and visions. I am staying local.

I have been fortunate to undergo an utterly transformative physical experience. Three months ago I was a different person; now my blood is 100% generated by donor cells. The dragon has shed a skin. As I find out who I am all over again, as I process the ordeal I have endured, I have the opportunity to see the world and my role in it anew. A large part of this is being able to recognize the places in my life where there is psychic dysfunction; what makes me feel out of sync? I do not like being angry, I do not like feeling powerless, I do not like playing rhetorical games of one-upsmanship. I do not like having my information flow create a dark haze over the beautiful realities of the life I am living right here.

Last week I went for a hike with a group of kids and parents who are wonderful, loving people. It was a gorgeous day. I have been nervous to take on a day out with the kids, but my aunt came with me, and I came home feeling completely recharged. On Sunday I visited a friend with a one-month old baby, and spent a happy few hours in her kitchen just chatting. Yesterday I trucked the kids around to pre-k and coop and they got to create and experiment and run with friends; they came home so tired and happy.  

This is my world. This is my news. It is a beautiful place, full of optimism and promise. It might not make the headlines, but everywhere I look, I see peace. And when I am full of peace, I can share it. And that can make the world more peaceful. So I'll have to accept what I don't know as a fair trade for what I do.

What I Know

I am starting to tune into what is hard about right now. Remember everything I said about not having control? All those lessons I thought I had learned, all those things I thought I understood? I was wrong. I am not there yet. Sometimes I wonder if I ever will be.

During the history of my treatment, I have always been able to come home and heal however I chose. This time, though, I have to endure, and embrace, a year of taking pharmaceutical drugs and not being able to eat some of my favorite foods. In addition, I can't go out and engage with people or take the kids anywhere. This is a whole different level of lack of control.

Not surprisingly, the combination of food, drug, and movement restrictions has left me feeling sad and restless. I am trying so hard to be grateful for the opportunity to learn to let go all over again, for declaring that there is nowhere else I'd rather be, but I have to be honest with myself. I am not loving this right now.

But I know what I love. I love dragonflies. I can watch dragonflies for hours. I love the way they zig zag around the yard. I love the way they appear out of nowhere when the mosquitoes come. I love the way they will land on John's hand while they are eating a bug, and just sit there, crunching. I love the way they look. I love that they are ancient insects.

And I love my daily walks. I love the way the moss grows on the trees along this road. I love the rock formations. I love how the light filters through all the great oaks here, differently at different times of day. I love when Wallace comes with me on his bike, and chats. I love when my leg muscles are sore from pushing myself.

I love having cancer behind me. I love having received this gift of a transplant. I love that I feel so amazingly, surprisingly, well. I love that this is a challenge, and that I can rise to it.

Mom the Survivor

In a lot of ways, recovering from a bone marrow transplant while taking prednisone and taking care of young children is a lot like having a nursing infant. I'm constantly ravenously hungry, I'm sleeping poorly, people need my attention regardless of my level of energy or interest, and there appears to be a direct relationship between my energy crash and demands for an intense Nerf battle. Or maybe the kids are having a battle that descends into the type of fighting chaos that results when an eight year old, even a very tolerant one, tries to play with a four year old.

So, really, I am not the first person in the history of the world to feel tired and unable to rest, to have to take prednisone, to have small children, to have blood sugar issues, or anything else. In fact, I'm probably not the only person I know to whom some of this, at least, applies.

Thursdays are my appointments in Boston. John and I call them our dates. My family has been very helpful in watching the kids for the day, and I schedule my appointments so that we miss both rush hours. Last week was a little nerve-wracking because, for the first time ever, the phlebotomist had trouble drawing my blood. She said my veins looked tired. In all the years I have been going through this, I have always been told I have terrific veins and there has never been any problem. It made me realize there is a lot left to this process - who knows if I'll end up having to give blood draws from some other, more painful vein, or get an iv; we aren't just going through the motions. This is an active, evolving thing, and all sorts of different and unexpected challenges are going to come up.

What does that remind me of? Oh, right, being a parent.

So yeah, I'm a little housebound. Where normally I would be diffusing some of this energy with trips to the beach and outings with friends, I'm hiding from the sun and scrambling to arrange activities to keep my kids entertained. But really, this recovery is mostly about logistics, trying to remember what I've been through and the space and safety I have to give myself while knowing that things are going to get better, and knowing that every mom has hard work to do.

What is Mom if not a Survivor? I just get to claim the title in more ways than one.

Hundred Day Holiday

Yesterday was the fiftieth day since my transplant. When I look back on what has transpired since January, I can't quite process it. I'll admit I am not in a place emotionally where I can talk about the cancer at all. It is very hard for me when anyone brings up anything to do with my recent health history, except for the recovery period from the transplant. There will be time to face that past, and I will need to take that time, but right now I need to put all my energy into my strengths.

Sometimes I worry that I will miss the opportunity to become a better person. When I'm full of fears and anxieties, counting the days and the limitations, I feel like I am turning my back on this incredible gift of the reminder that now is what we have, life is what it is, and my outlook is my choice. In this recovery I have even less control than I have ever had before, because I can't pursue my goals using nutrition and not pharmaceuticals. I have to accept these pharmaceutical drugs, and all the rules of the recovery process.

So I will embrace them. If I need to eat every five minutes right now, I'll just keep doing it, and I'll eat the things I am allowed to eat and feel so very grateful that I am not having trouble eating. If I need to ask everyone who comes into the house to wear a face mask, I will do that. If I need to drive to Boston weekly, then bi-weekly, then monthly, so be it.

There are a lot of small milestones in all of this. But one of the big ones is when I hit the hundred day mark. That is when they start tapering off the graft drugs, and this new immune system really becomes mine. Until that time, I have to be extra careful. For fifty more days. So I can revel in the fact that I have fifty days to focus on letting go, on reveling in the love around me, on feeling pretty good considering what I've been through. The doctors say everything looks terrific. Even problems they might expect me to have, I am not having. Even the small spot of graft vs. host disease that I did have is something they consider a good sign, because it means the new immune system is dominating and working.

The time to revel in this gorgeous late summer, letting my body become the dragon, fearing nothing and embracing everything, is now. So this is when I'll do it. On my hundred day vacation.

Convalescence

The butterfly has flown from the hospital walls. But that's not the whole of the story, I'm learning. Here I am on day 43 post transplant, realizing how much is left to this process.

It's hard to be filling my body with drugs, to have to shun the sun, to not be able to prepare and eat foods the way I am used to; in general, to not be able to care for myself in the way that seems best to me. I am sleeping poorly, which is uncommon for me, and waking up dopey from the drugs I take to try to fall asleep.

But my boys are home, and there are lots of little milestones to shoot for. The weekly trips to Boston should only last a few more weeks before they become monthly. In October I will hit the 100 day mark. And someday this will be a full year behind me, and things will be back to normal.

This period of convalescence is confusing for me. For the most part, I feel really good. And yet, the restrictions get into my head. I feel more limited than I am because I know. I know I have to wait on the cessation of these medications to get my body back. I know I have to wait on the full transition to get my normal back. But in the meantime, my life is mostly mine. I have my books, my boys, my home. I have all my support people. I have everything I need.

I have to embrace this and find myself right here, intentionally. And as the days pass, I am finding it easier to do. This is real life.

AWOL

When I found out the day of my original discharge that I would have to stay two more weeks, I thought my heart would explode. I was crawling out of my skin. Even as I could see that there was a serious medical situation, I was furious and felt trapped and angry.

The following Monday, I almost discharged myself against medical advice. It was the assurance of the doctors that the cure was working, and that early discharge could, and had, led to mortality, that kept me in.

But I still didn't know how to be here. I didn't know how to make it through these weeks within these four walls. I lashed out. I cried. I begged.

Then I shifted. I found a way to take my own advice. I asked for anti-depressants and mild sedatives. I asked for coloring books. I started to be able to read again. And I decided to choose to be here.

I am grateful that I have been here for the early post-transplant period. I will be going home soon, without needing regular transfusions, without dozens of visits to Boston. I have been safe and well-cared for by incredibly compassionate people who are doing everything in their power to make me comfortable. This is the best place for me to be right now.

A friend told me the other day that she imagined her heart as a bright sunny room with the windows open, and she was sweeping it out. For me, that metaphor is of a room where a butterfly was trapped, batting at the windows, frantic. Then I opened the windows and the butterfly flew out. I can be free here, by choosing to be here.