minor miracles

A year ago, I was fooling myself that I was in good health.  I was exhausted, it is true, and first my lower back and then my chest hurt in new, deep ways.  I told myself the pain was due to a fall on the ice and then, perhaps, because I had moved something heavy in a strange way and injured my muscles, or my nerves--whatever I had done, it wasn't enough to pull me away from working long hours and worrying about work for even longer hours.  I had gone to the urgent care facilities near my home and seen my doctor, and I was diagnosed with everything from costochondritis to depression.  A year ago, I defined myself as a working mother--I was proud of my career and where it was headed. I had been promoted in the last couple of years, and I felt confident about my place at the firm, valued and heard. I was in love with my children and with my partner, and I thought I was clear-eyed about the depth and complexity of those relationships.  And of course, I had my dear friends.  I knew that many of my friends were friends I had through and because of work, but I was confident that many of those friendships were not dependent on work, that I was firmly entrenched in a busy, loud circle of working women who had an eye on each other, who were protective and loving, engaging and engaged.

I'm no longer fooling myself about my health anymore.  My support group for people with metastasized cancer begins and ends each week when the leader rings a set of Tibetan hand bells--the clear sound penetrates the air and she asks each of us to shut our eyes and not to open them until we can't hear the sound of the chime , which thins out and gets quieter as the seconds pass.  I always think of death, of the time when there is no next breath, when I won't hear the keening of the bell fade away because I myself will have ended.

Last week in group, a woman who is deeply sad, who is suffering terribly with breast cancer--unlike many of us, she looks ill, she is thin and exhausted and clearly in pain--this particular lovely woman started our meeting by breaking down, collapsing into bitter tears as the rest of us, devastated, looked on in dismay.  She told us she is so depressed, she simply can no longer handle the stresses and strains of everyday life--cancer, and her everyday dance with pain and medication for pain, is taking a tremendous toll, and what is she to do? Weeping, she beseeched us: what is she to do?

I looked around at the ten or so of us sitting in a circle, all just ordinary humans, and thought, oh God, what can we possibly do to help this person? What the hell were we thinking, bringing this group of people together? None of us can begin to help ourselves, none of us are equipped to help you, crying lady, because now we are all weeping, we are all feeling your pain, but really, actually, really we are feeling your pain.  Suddenly the idea of a support group for people with metastatic cancer seemed like a terrible idea, an idea designed to only further immerse each of us in pain.

We don't have any patience for nonsense in this group--if one person had said then "everything happens for a reason," I am certain someone else would told that person to get real.  Or said any of the things we all have heard--"God doesn't give you more than you can handle, "or, "You are so brave," or, "I just know it's going to be okay."

It seemed, at first, that all we could do is to sit with her and bear witness to her anguish, and to allow her this space to weep and cry out at the unfairness of cancer, at the fact that she is already in a clinical trial, about which people without cancer always talk about excitedly, as if clinical trials are the holy grail, a place of stabilization, even of cure.  Clinical trials are for people who are so fucking sick that there is nothing left for them, nothing that is not just experimental.  This woman's health is fleeing her body and she is on a clinical trial and what is she to do.

And then a funny thing happened.  Someone asked her if she had tried medical marijuana.  And she said no, indignantly, that her oncologist had also suggested this, but how was she ever going to find someone to sell pot to her? how does one secure marijuana? Hang out in seedy neighborhoods and wait to be approached?  And oh, bless her, we had answers.  She didn't know about CannaCare, the perfectly legal and clean place where you can walk in and get an appointment with a perfectly respectable doctor, who will happily, without hassle, sign you up, and then, a couple hundred dollars later--you are a state-certified buyer of medical marijuana, and you can go into the store most convenient to you, why there is even a store which delivers medical grade marijuana to you, and it's easy to take, you can take a pill, or eat a square of chocolate, or vape it--for fifty dollars, you can buy a package of pre-rolled joints in the nicest of packaging.  And honestly, marijuana might really help this woman--with her depression, with her lack of appetite, with her pain.  We felt self-congratulatory.
And then the jokes began.  Really pretty silly and not that funny jokes, but jokes nonetheless, about smoking pot, and oh, what if we smoked pot each time we met as a group, what a hoot it would be, and so on and so forth.  And the jokes continued throughout the remainder of the session because that woman smiled in response, she actually took in a few deep breaths and smiled.  It really wasn't much, but we somehow saved ourselves from this moment of collectively looking straight into the abyss with her and lived to tell the tale for another day, for one more day, anyhow. It felt like a minor miracle.

My real point here is that now I identify as someone with cancer.  I am conflicted every time I go to the group because I'm not entirely comfortable with that fact, and I hate the idea of being defined by this illness, and I want to shrug it off--nope, I don't like the way that fits, it's just not me.  But I have the disease and I keep going to group, and sometimes it's a little funny, and lots of times it's heartbreaking, but mostly it's nice to be seen, to be heard.  That's what I realized this week--it's a place I can go to where people listen to me, and talk to me, and I learn from them.  That's what work used to be like, some of the time, for me.

I'm ruminating about work because I went back to work last week, although everything about it is different.  I'm working very part-time--something like seven to fourteen hours a week--and I'm going to be working from home.  I spent a lot of time debating the pros and cons of going back to work, even in this diminished capacity, and when the decision was finally made, and the doctor's notes in, and the scope of my first project outlined, it was all a little anti-climactic.  Well, I'm not going to lie, it was a little depressing. Of course I don't have my old job back, nor could I do my old job.  I have a great project-based job to do, and I'm quite lucky my employer was willing to work creatively with me, and I hope I can do a good job at it. But if I'm honest,  I miss being defined in terms of work. I miss having a voice and being heard in those ways too.

Most of my friends and family were totally opposed to me going back to work. If it was me, they said, I would just relax and take it easy.  You know the old adage, Trace--no one ever said on their deathbed: I wish I had worked more.
But I am lonely and I don't like being defined completely by my illness.

A funny thing happened this year.  I got cancer and I didn't die.  Not yet, anyhow.  When I got sick last summer, there was a flurry of activity--it was a tremendously emotional time.  I put my will in order.  Friends and family promised to take care of my children and my Kyle when I die.  We put the twins in therapy and I bought all the childrens' books on dying, books where the mothers lose their hair and get funny hats and seem to have breast cancer, judging by the amount of pink in the illustrations. There were so many casseroles, we had to put some of them in the downstairs freezer.  We were skipping ahead a little, as it turned out, because I didn't immediately die.    Before I die, I have to be sick, and live out whatever path my cancer and modern medicine have in store for me.  It's almost been a year, and I'm still here. I'm not healthy, exactly--my hair is still so cropped that most people recognize it as a cancer-inflicted style, and my skin is covered in a chemo rash that hurts exactly as it looks like it would hurt.  I take a nap every day, and some days I ache like I'm decades older than I am.  But I am very much here, so incredibly alive. Thank god.  (I know that some of you are making the sign of a cross, or knocking on wood, or throwing salt over your shoulder, or whatever you do to try and bring luck into your life, and I get it--I sure as hell don't want to tempt fate, and it makes me nervous to talk about how good I feel, but I'm trying to be brutally honest here).

Anyhow, I went back to work last week  in large part because I missed the talking and I missed feeling like I was building things or fixing things or responding to problems.   Let's be clear.  I am not going to go back to my career--I have to get more comfortable with the fact that that door shut for me and it's not going to reopen.  And I understand the problem with giving work to someone who has stage four cancer--what does deadline mean in this context? Pun intended.  But look what happened on that Southwest flight yesterday.  (I tried to protect Kyle from that story because she is already afraid of flying (I'm not kidding here--afraid of flying makes it seem like something she would rather not do but does with trepidation, when the truth is, every flight for Kyle takes serious bravery and lots of pharmaceutical help--I know some of you know of what I speak yourselves).  But it was too late--she was already reading the NYT story this morning about the terrible fate of the passenger who was lifted out of her seat into the air, and her terrified fellow passengers and their hurried text messages and calls to the people they love.) My point here is obvious.  We all are here each day by luck and by chance and while I'm still here, I'm going to do a little bit of work.  I promise to keep meditating and writing poetry and spending time with my family and cooking elaborate meals and knitting with the old ladies with cancer over at the healing gardens.

Since I'm trying to level with you, I'll confess I've been a little cross lately, feeling lonely, as I mentioned, and fussy. I know some of it is jealousy.  My gorgeous, superhuman fit sister ran the Boston marathon in the freezing rain and her time was so good she qualified for next year--and as you know, she was running for charity. (I have run a fair number of marathons myself you know--8 or 9. I know, it surprises me too.  The truth is I ran in the very back of the pack, next to the people who all had a special angle to their marathon story.  Like they were 100 years old.  Like they didn't run, but actually did jumping jacks for 26.2 miles.  Like they were pushing their adult disabled son in a special wheelchair.  Seriously, these were my athletic peers).  My mother and my daughter are doing a thirty mile walk for charity this weekend with my beloved aunt Rose.  I watched my 80 year old dad get down on the floor the other night to undo a knot and he practically was bouncing with flexibility and verve.  I get tired walking at the bog, and I take a special kind of yoga for people who have a limited range of motion.  It's not so much downward dog, as it is sit-in-a-chair lazy cat.

My friend Roz and I were talking over coffee the other day--we were at this suburban hip coffee place with glass mugs and pastries filled with superfoods and ancient grains.  I ordered a flowering tea--have you had this? Someone takes the time to wrap your tea up in a bundle of dried flowers, so as the hot water soaks into tea, the flowers unfurl.  It's just so careful and lovely.  It is as far away from a bag of Lipton's tea and a packet of Sweet and Low as you can get, and I know many of you will have to google Sweet and Low.  It's what people on a diet used to do before stevia.  Essentially it causes cancer.  Anyhow, Roz pointed out that I'm a people person and for some reason, a light went off.  Right! I'm a people person and I'm not getting enough people, I thought.  I mean, I spend days alone now, I thought. But not really.  I always have the twins and my wonderful friend Kim, our nanny, and I usually see my mom or Zoe or Avery everyday.  And every night, Kyle and I take out the contents of the day and spread them all over the comforter and talk them through before finally falling fast asleep at 11 or midnight.  But I mean, aside from that.

So it's not so much that I am alone. It's that at work, I used to be drowning in people.  People at my office door, associates weeping in my office chair, emails flying in by the dozen, the phone ringing.  And I kind of loved it, even though it was stressful at time, and it made it hard to get actual work done except in the early morning, hence the long hours.  Cancer meant that I just retired from that one day, and I miss being needed in that way.  I think that's it, although I reserve the right to rethink this one.  I think that is why I am so happy to have a project to noodle on, a project that means I might jump on a call every once in awhile, send an email or two, put pen to paper.  Do something necessary for the running of something other than the running of me, or my family, or my house.

Speaking of the house, last night I went outside to walk the dog and you know what the weather was yesterday. I mean, even if you don't remember what day yesterday was when you are reading this, you know yesterday.  It was another of those wet, gray, interminably wintery spring days which are dragging everyone and their sister down into the doldrums.  I cannot believe I would complain about the weather, me with my cancer diagnosis and all, but this has been a spring sponsored by the makers of Zoloft.   But last night was different.

As you all know, it's incredibly dark where I live.  We have no street lights on my stretch of Curve Street, and the houses are stretched apart.  I live across from a field and there is another field to the left of the house, so when I walk the dog at night, it can feel like we are the only people out there in the world, because we are.  I know Sebby isn't a person, but I kind of pretend he's a person at those times, because it comforts me.  Otherwise, I would be really alone and sometimes it turns out I'm not really a country girl.
What am I afraid of? I guess a little bit other people, a little bit other animals, and a little bit the stuff of my imagination.  On the other people front.  Look, I don't know where the serial killers go when it gets dark, but sometimes Curve Street in Carlisle seems like a perfectly rational choice, and I don't want to set them off walking my pretty Goldendoodle, checking Facebook in the dark, oblivious to the ways that reminds the serial killer of his hated mother and send him into a murderous rage. It could happen.  Although I get that I'm far more likely to die of lung cancer at this point.  I'm just saying, for those of you who have been following along for a number of years, I'm not that great with luck.
On the animal front. I don't like my odds against any angry animal rushing out of the woods--you name it, angry beaver, angry fox, angry bear.  Sebby is a Goldendoodle and here's the thing about this dog. A lot of times when we walk down the dark streets, the woods closing in on us, he starts to tremble and whine. Why? Why is he doing that? If he is afraid of things I can't see in the woods, I am doomed.  And what exactly is he seeing? or sensing? I'm telling you, when the dog gets nervous being out in the dark, I say loudly ridiculous things like: "Sebby! Stop being so silly.  There's nothing to be afraid of."  (I admit, I do end with a prepositional phrase.  I thought about fixing it, but I knew you guys would know it wasn't accurate if I told you I say things like: "Sebby! There's nothing in these woods of which you should be afraid!"
On the imagination front.
I grew up torturing myself with Stephen King short stories and books like The Stand and It, as well as collections of nineteenth century ghost stories, and Peter Straub's Ghost Story, and Shirley Jackson's The Haunting of Hill House, and Mary Shelley's Frankenstein, and even books that you might think wouldn't affect you, but boy did they, like The Great Glass Elevator by Roald Dahl, or even good old Grimm's Fairy Tales.  One of the scariest things I've ever read are the transcripts from the Salem witch trials, where Tituba testifies about walking in the dark woods of Salem and running into a tall, dark man who was the devil, who asked her to sign his book while a little yellow bird flitted about Tituba, who had already been taken from her native Barbados and forced to come as a slave to the dark, cold Puritan New England of the 1600s, a land which showed no mercy.  Okay, I'm scaring myself.  You see what could happen to me out on a dark wood, alone with my scaredy-cat dog, who isn't much of a person in these situations.
But not last night.
The air was cold, yes, but the wind felt like a strong caress, not punishing at all.  The word I kept returning to was plummy--the air was dark and soft and plummy--a kind of velvet night.  And it did feel like Sebby and I were very alone out there on the dark road, but I somehow felt like the wind was comforting me.  Recently I spoke with a woman who ministers to people who are very ill, and she asked me if any words or images had been returning to me often.  At the time, I answered yes, letters.  I had been ruminating about letters sent, like that Gerard Manley Hopkins poem--letters sent out into the dark night, letters sent and the tremendous weight of silence as you wait for a response, a sign from the world, from the starry night sky, that you have been heard.  She told me to try hard to listen for God, not to fill in silences with noise and chatter, but to give myself an opportunity to hear.
So last night, I turned off my flashlight and tucked my phone away (I sometimes use the phone as a crutch during times of silence and fear, because my phone always talks back to me, it always has something to say, whether it is the newspaper which appears on the screen, or Facebook, or a text from my daughters or sons)-- I put my phone into my pocket and I stood on the road and I tried to listen.
And the wind was cold but kind, and clouds crawled across the dark night starry sky, and the fields were alive with crickets and hushed bird sounds and the rustlings of animals, of field mice and rabbits and moles, and the dog was quietly breathing, and I felt the presence of God and my grandmother, and it was tremendously, deeply comforting.  And I stood in the night sky for a few moments more, letting the darkness hold me, letting go of my fears and anxieties about self-worth and friendships and meaningful days, and then I turned and went back into my beautiful house, lit up golden, like a painting by Rembrandt, where the subjects (here a woman and her house and her dog, there, in the painting I am thinking of, a man and a woman on their wedding day) are dark, emerging from the shadows and yet they glow, in a golden bath of light which comes from no source the eye can perceive--the sun is not out, there is no candle lit--the very light itself is a character, and it stands in for the presence of God.