Early Morning Pain Diary

It is 3:37am and I am overthinking pain and I am sitting in my sewing room and writing here, hoping it will dissipate and I can go back to sleep. It is my niece’s 15th birthday tomorrow and I am hoping to go to her celebratory breakfast. On the table beside me is a pill bottle with Oxycodone in it, the pill that works but that I don’t like; I feel it makes me edgy and nervous, and I am already edgy and nervous now.

I found something on the internet last night that said to write when one is overthinking. I find it helps, if only to track the racing thoughts and feelings of pain so that I can reflect on them later. This pain is wild: it starts in my back just below my shoulder blades and goes down near my kidneys then wraps around to the soft parts of my belly, which are swollen. I don’t think I am digesting food well: it feels stuck. I miss enjoying eating and drinking things, and I miss not being in pain every moment of every day. My legs and feet are so swollen with edema, and the swelling stretches all the way into my mid-belly now, misshaping my hips and my tummy and making me feel like I am sloshing around with extra water, 17 pounds of it at the last check. It all feels insane. How has this happened and why is it happening?

It is impossible to feel comfortable almost anywhere. It feels like my body is rebelling against me and I don’t know what it is trying to tell me except that many of its systems are angry, riled up, inflamed, shrieking! I had to leave work earlier today because my legs were so swollen and my back was hurting so much that I couldn’t concentrate and I was worried about being able to drive safely in my mental state. I hustled out the door in tears, apologizing for something that I cannot explain.

I just took one Oxycodone 5mg: I guess we are getting a play-by-play this morning. I keep wondering what this experience is supposed to teach me. I am so confused and clouded by the symptoms of pain and physical discomfort, that the only thing I can pay attention to is how much my friends love me and communicate with me and wish to help. It is so wonderful: I feel like I am in this pink cloud of love, made of all these people who love me and want me to feel better. I can’t believe there was ever a time when I worried about being alone. I have been reflecting on my post from last week when I wrote about my experience in the hospital when I was in high school. Something in my body knew something was up: I was in the ER the next day and now upon this journey which appears to be just beginning.

I worry about how I am going to pay for things now that I am not working very much. Do I call the credit card company and tell them what is happening and ask them to pause for me for a month? What about the student loan company? It seems worth a try as there is no way around how this feels: debilitating. I wish pain pills helped instantaneously and I wish they didn’t mess up my stomach. I can’t figure out if all of these medicines are helping at all. They must be? It is so confusing.

One of the other things I am able to focus on reflecting upon is how many things about health that I took for granted: walking long distances at a fast pace, munching on delicious food that made me feel good inside, sleeping through the night now that I have an Estrogen patch, and drinking a glass of rose with friends on a beautiful afternoon. All of those things are on pause. My work is on pause, and by that I mean my creative work, as I can’t focus on it and have no follow through and not much strength to do anything. It feels scary, it feels lonely, and I cannot get comfortable. My sweet husband has been doing everything, and I feel bad about that, too.

My doctor tells me I have to let go of all of those feelings and be willing to accept help. I am, I think. I mostly feel guilty about Cody having to do everything. But so far, at least to me, he is willing and not too exhausted. Right now, as I sit here typing, I am moving my body back and forth in the chair in a vain attempt to alleviate pain, to stretch something that is taught, to do anything to help. No luck.

Dear Universe, please help me move beyond this pain state, and may the surgery being done Friday be safe and go well and remove some samples that can help us understand what is going on so that my body can heal itself. This is hard, y’all. Love.

Lyme Diaries – It Might Not Be Lyme

As I sit here in my living room, lots of little birds are chirping out the back French doors, heralding another day, and the morning traffic hums from the road. I don’t mind the traffic, just the engine brakes of the trucks that barrel down a few times a day; our driveway is at the bottom of two hills, and they really go for the brake noise if they are going too fast. Almost everyone is going too fast.

Yesterday I went to the hospital for a CT scan of my abdomen, which had been ordered by my doctor when she said, on Friday, that she “officially did not like this” – this being my set of symptoms that include: whole leg edema, stomach pain, and radiating back pain. I thought I had pancreatitis, thanks to Google. Yesterday I met the amazing radiology tech, James, and he walked me through my first CT scan. My friend Nicole, who also is a radiology tech, walked me through the steps a few days earlier. I was anticipating something that was alot worse than it was. It was quick and almost painless, although the feeling of the contrast going through your body is a weird one; hot, moving, liquid-y , with a spicy taste in your mouth. After the CT scan, I stood awkwardly in the front of our small, rural hospital, trying to decide if I wanted to go to the ER or not. Nieve, gatekeeper of MDI Hospital, asked me if I had another appointment. I told her the source of my quandary. She said, “only you can make that decision. But if you want to, I will call them to come up and get you”. I nodded and started to cry, and soon after, a young nurse assistant named Zabet appeared in the elevator. Zabet is an EMT and a part-time massage therapist, and she wears a mask all the time, as if we are still in COVID times. I suppose we are.

I went to the small ER, a cluster of comfortable purple recliners in a small room divided by green and white curtains. A funny nurse named Dustin with whacky disheveled hair came over and took notes on two sides of a post-it and made me laugh. He sent Dan, the doctor, all of maybe 25 years old, seasonal doctor from U Penn, over, and we talked. Dan somehow managed to be serious without being officious: he was serious, but he listened, and he was kind. We moved into a room and I laid down on the bed. My pain was starting to creep in as I hadn’t taken anything since early in the morning, and it was now noon.

Hot Tip – if you get a CT scan and then immediately to go to the ER, they read your CT scan in about 5 minutes! Dan came into my room and said some words that were a little bit ominous but mostly supportive, “there is something wrong with you, and you aren’t crazy”. He then told me that the scan showed “a lot” of enlarged and inflamed lymph nodes, indicative of something called Lymphadenopathy. Then he said that this indicates the possibility of lymphoma.

In that moment, I time traveled to three-ish years ago, when I went to Texas Oncology with Mary Ann to see her doctor, who she loved, the doctor who always wore tall high heels and power suits even when she came to see you in the hospital at 5am. She was supposed to get chemo that day, but we had a meeting with her doctor first. It was the day when her doctor said that chemo was no longer working, which we sort of knew because her belly was very swollen and she was jaundiced. We at least knew something was off. I reached out to her to hold her hand and she slapped me, not hard. She looked at me in fear and acceptance, and said, “I can accept this”. Yesterday, I heard her speak and in my mind I also said, “I can accept this”.

There was a bright yellow chair next to my hospital bed; the yellow was the same yellow as a pair of her funny Birkenstock clogs that she used to line up in a neat row outside the door of her apartment. I said, “I wish Mary Ann was here”. My mom, who was with me in the room, said, “because of her experiences?”. I said, “No! Because she would make me laugh!”

A few hours later, I was shot full of pain medicine and had had a chest x-ray and was scheduled for another CT scan the next day. I love the radiology tech, so thought it was a great opportunity to hang with him again, and he said the same thing when he came to check in on me. We went home at around 3, and I slept for a lot of the rest of the day. They prescribed oxycodone and laxatives (what a combo!). They work for pain but they make my stomach hurt. They told me to keep taking advil and tylenol, every 6 hours (I have to take them every 4 and am hoping I am not wrecking something in the process). My doctor called at 730 and said she had shown my paperwork to her superiors, and they were elevating my case and referring me to Dana Farber, the creme-de-la-creme cancer institute in Boston. She asked if that was all right, I said, of course! And then I cried.

When I went to the ER yesterday, I didn’t even think that this was a possibility. But here we are. My poor husband is so worried, I stayed eerily calm until 24 hours had passed and then I spent a lot of the next day crying, but that is ok. My trusty steed, Oscar, never leaves my side and all the friends who I have talked with tell me how loved I am and how I am not alone. I haven’t been able to go to the gallery all week due to a combination of exhaustion, edema, and pain. I want to go to work, and I am hoping we can get some symptom management down so that I can. I miss it.

I miss not having a stomachache, and I miss my appetite. I miss red wine in the evenings, and rose in the afternoons. I miss walking at a fast pace, listening to my heart rate increase. I miss feeling like my life force is strong. When I get these things back, I swear I will never take them for granted again.

Today I go to the doctor again, and on Tuesday I get to meet a random doctor who will read the results of my scans. I hope he is as nice as everyone else has been so far. Let’s put that out there.

Love, Patience

A Tick-Borne Summer

As I listen to my surroundings, I hear the song of many birds, the hum of summer traffic on the road, and the wind moving through the thousands, millions, of trees on our land here in Maine. Every year, later than I would like, the leaves come back to the trees after months of absence. One day, they are tiny speckles of lime green, and the next, there are millions, billions of lime green leaves dancing in the air. Just before that, the birdsong comes back with the birds, and the silence of a wind-whipped winter is over. I love sitting outside in the wind, in the sun, in nature, in this tiny sliver of peace and paradise: a small house, green, with a nice porch, and plants all around.

I started feeling really crummy two Tuesdays ago, but couldn’t place the feelings; was it bad hummus? Had I drunk pond water on my Monday swim when it was so hot and clear the only thing to do was to swim? Or perhaps I had done that on my Tuesday swim, when conditions were similar only cloudy? On Tuesday evening I started to feel like there was a rock in my belly, or a beach ball, or something that was taking up all the space that I usually fill with tasty things like roast chicken or tacos or muffins in the mornings. My belly also became swollen out like a little kid’s. Usually my tummy is fairly flat with its fair share of mid-forties curves and wrinkles. I have been exercising alot on my elliptical and feeling proud of being stronger and my tummy flatter. But no longer. On Tuesday evening I tried to eat dinner as normal but barely ate half of it, saying I didn’t feel super well. I thought: tomorrow will be better.

Wednesday came and went and the stomach trouble became worse: it hurt very much and was very uncomfortable, and with it came this weird back pain across the whole top half of my torso. I had a hard time standing or sitting for long periods of time. If I could lean back, I was ok. If I could lie down, that was better. I was annoyed.

On Thursday I thought I caught the chill of a cool day that followed a few hot ones, but as I drove home from the gallery I recognized the familiar feelings of a fever. By the time I made it home, I was shaking, cold, and feeling rotten. So began my days of spiking 101 degree fevers (high for me as my normal temperature is about 97 degrees), breaking fevers into crazy sweaty messes, and the realization that something was wrong with me.

On Friday I managed to get in with a random doctor who told me that she thought I had a stomach bug that was roaming around. I asked her if she would run a tick panel just in case, and she said yes, so we did. I took the rest of the day to chill out, thinking I might be feeling better til the fever started again.

On Monday, I went to my regular doctor and told her I was worried I had a kidney infection and she said she was worried I had Lyme disease. Luckily, the tick panel was already being processed, and on Tuesday, she called and gave me the gross and terrible news that I have anaplasmosis and Lyme disease, together.

Blech.

She also told me I have to take antibiotics for at least 30 days and they are these fun ones that cause you to sunburn so easily you can’t really be out in it. She apologized for ruining my summer (I blame the tick, personally). And since Monday I have been taking two types of antibiotics, twice a day, and probiotics 1 or 2 hours later. I felt better on Thursday, and then yesterday I felt bad again. Today is Saturday, and I am very tired. I wonder if I am now feeling tired from not eating enough, because one of the things with that stomachache from Hell is that my appetite has gone on vacation. Somewhere good, I hope.

One of the strange emotional responses to these illnesses is that I am determined to not sweat the small stuff. That feels good, like I am doing something right in a situation that I cannot control at all. Anaplasmosis is super scary and can kill you in various ways (spooky!) if not treated early, so I am proud of myself for going to the doctor. So in the vein of not sweating the small stuff, I am trying to be a nicer version of myself, more understanding, and quieter. I am trying to spend time thinking about what I think about the state of the country, but not react to it as much as maybe I have been. I am thinking about the importance of creating art in times of dread and sadness, and trying to be participatory in that process.

The energy level is the challenge. Fatigue is real with Lyme and anaplasmosis. I haven’t felt this fatigue in a long time, but I am not unfamiliar with it; legs made of lead or concrete, not strong, dragging through space. I would like to go swimming or maybe just sit in a lake. Today is hot and I hope to fill up our cowboy pool with the cold, cold well water that comes from deep within the earth. I plan to put it on the leechfield, on top of the septic field; I think it’s mostly harmless to that process going on below. Last year when I filled up a giant pot to dip in on the hottest days, the water was so cold it was shocking! (There are photos to prove it!) This year, I will fill up the stock tank and let it sit for a day or two to warm up before I dunk myself in. Over by the leechfield I have planted lots of medicinal herbs and witchy plants, as MOFGA told me I could plant shallow-rooted perennials. Over there we have hops, madder, weld, motherwort, marshmallow, thyme, yarrow, blue vervain.

Ho hum. One of the good things about having peaceful, slow hobbies is that when you are slow yourself, you can still do them. Today I want to work on jewelry, so I am about to head to the studio to do just that. I am working on a series of rings, and I need to order some materials for a custom project I am working on. One of my recovery plans is to wake up early and write in the mornings, as I have much more energy when I wake up than when the afternoons roll around. By then, I feel quite ploddy, like I am going through mud, mentally and physically. These illnesses don’t make me sad, exactly, just tired and a bit disappointed. I like having lots of energy, high vibrations, and excitement. I am sure those will all come back; I just have to let this ride out.

Current projects are:

1.Working on the second edit of the book and finding all the photos that go into it

2. Power rings of various interesting stones and two pendants for a show in August

3. Finishing the third quilt in a series, photographing the three, and sending them to their destinations. The third one has no home, so I wonder who will claim it?

I am drinking coffee now, still listening to those same sounds but the wind is stronger, the sun higher in the sky, the air is warm and dry. My living room is orange and bright with sunlight. We are on new journeys in this life, new career paths, so much exploration! We asked for an adventure and we got one! Who knows what the future holds, but we have managed to pay for everything so far, and I can only hope the blessings continue and continue to grow. Every night I look at the vast spiderweb of stars and ask them to keep helping us, protecting us, guiding us. The Big Dipper right now is just above the driveway and, every night, reminds me that “my cup runneth over” and ain’t that the truth.

I hope you are well, wherever you are, and if you are not, that you can figure out some ways to make it work while you are sick.

xxP

Rainy Monday

Today the students worked on puzzle cubes and, mysteriously, more capybaras appeared on the drawing wall. Students right now are really into capybaras.

My friend who is in the hospital is doing all right and finally getting some dots connected in terms of care. It seems to me that if you were to have to navigate the US health system on your own, you would just tear your hair out.

I was thinking about one of my favorite times with my friend, when she and our another old friend stayed at an aunt’s house in Port O Connor. The house was just beautiful; up on stilts, you were at eye level with palm trees. The wind whipped perfectly, and one night we made dinner in the kitchen, mushrooms with pasta I think, and we told stories and we heard my friend’s whole story for the first time. It is not my story to tell without permission, but it involves all kinds of things that should be written in a book.

That night we had a fire in the fireplace, and if I remember rightly, it was cold in POC, which sometimes it was. I miss going down there although the last time I was there was only last summer. We should have stayed longer, me and my two friends and the dog.

This morning just as I was waking up, I had a dream. I was outside on a lawn somewhere in England, and my cousins were all around on the grass. I was sitting and they were standing but I was child high and all their kids were moving around. I realized it was at a pub so I went inside and my Dad, young with dark hair, was sitting at a small table and he smiled at me. He asked me if I was all right, if everything was all right. I couldn’t talk to him: the words wouldn’t come out and were completely hushed as if their air had been compressed right out of them. He smiled and then he was outside the window with a rolling suitcase. He waved at me and walked out of the windowframe.

A Little-Known Side Effect of COVID-19

The time will come when diligent research over long periods will bring to light things which now lie hidden. A single lifetime, even though entirely devoted to the sky, would not be enough for the investigation of so vast a subject… And so this knowledge will be unfolded only through long successive ages. There will come a time when our descendants will be amazed that we did not know things that are so plain to them… Many discoveries are reserved for ages still to come, when memory of us will have been effaced.
― Seneca, Natural Questions

[names have been changed]

Early in the fall, my husband came home and said that one of the ladies that he works with needed a tutor for her child, who had been in an accident and needed help with relearning things due to brain damage. Being that I hadn’t really worked with any students at school and was missing them, I said that I could help.

I spoke to Alice’s mom and was told her story. It is one that you probably haven’t heard about, or thought about, but I am in no doubt has happened to many adults with disabilities during the pandemic.

Alice, like many people, has multiple medical conditions. She has Addison’s Disease and Epilepsy, and something happened last spring to cause a grand-mal seizure. This seizure led to the ambulance being called, no surprise there, but the story now takes a twist.

As part of the seizure, or concurrent with it, Alice was also having an Addisonian Crisis. The ambulance drivers, stressed out due to overwork and the global pandemic, did not listen effectively to Alice’s mom, who I am sure was also very stressed at the moment. Alice usually goes to a hospital in Taylor, the closest major hospital to our area, but due to the pandemic, all hospitals had networked and routed patients to different places based on their medical needs. Alice was taken to St David’s in downtown Austin. Alice, it is important to note, is a 20-year old adult. The ambulance would not let her mom ride with her due to COVID. When Alice arrived at the hospital, no one knew her and the doctor familiar with her medical history was over 30 miles away at another hospital. The attending physician did not recognize her symptoms as Addison-related, and did not treat her as such. Her mom was not allowed into the hospital because of COVID, and the hospital would not release any information because Alice is an adult. Days later, her mom was finally able to get information, and found out that her daughter had had a heart attack and went without oxygen for 10 minutes before she was revived. At that time, she was in a coma, and remained in one for three months.

Before this accident, or incident, use whatever label seems appropriate, Alice was working at a sandwich shop and Walmart. She was taking two or three classes at Austin Community College. She couldn’t drive because of her epilepsy, but other than that, her life was completely normal.

In about an hour, her life became the opposite of normal. After she was released from the hospital, she could no longer walk unassisted. She had no short-term memory. Her speech was different: no longer the voice of a normal 20-year old person, she spoke in a monotone. She could not swallow liquid without risking aspiration, and could not eat solid food.

Now, a year after her accident occurred, she can walk on her own, and she has me and two other therapists who work with her on her memory and mobility. She is back to reading books and texting on her phone. She loves to watch Disney movies all day long. We are working on speech and her voice: trying to get her to control her voice more than she has been. She works very hard and keeps a daily diary now and makes marked improvements every week, although they are small and might not be obvious to someone who didn’t know her. Alice lives with her grandmother, her uncle and her brother, Andrew. Her mom lives across town with her husband, and her sister goes to college full-time at a nearby university.

When I think about Alice and her experience of the last year, I am mystified about how I didn’t think about this side effect of COVID: that people could receive such poor care that they die, or end up permanently (or at least in the long term) impacted by medical mistakes caused by the stress of the pandemic. The stress is systemic, and I suspect we haven’t really begun to understand what it has done to us individually and societally. I am sure, I am positive, that there are other people just like Alice out there; people who bore the brunt of a pandemic despite never actually having the disease.

COVID has broken-down, destroyed and distorted so many aspects of life. I sit here in a classroom, typing this story, and it is mid-April. The last time I had normal classes was over a year ago. The next time I have normal classes will be: no one knows. I asked Alice the other day if she intends to go back to ACC and she said yes. After all, there is nothing missing out of her amazing brain; it just takes a lot longer to pull the information out of it.

As with all things, the only guarantee is that things will change. Alice will continue to improve slowly. Sometimes I dream about going to her house and seeing her walking around, saying hello, and hearing her speak in a normal voice and tell me all about her day. Right now she is still talking in her funny monotone which is broken up with laughter, especially when we do voice exercises which make her make the funniest sounds.

Years from now, when we reflect on these times, I wonder what we will remember and what we will forget. What will be significant to us, and what will fade away?

Memory’s truth, because memory has its own special kind. It selects, eliminates, alters, exaggerates, minimizes, glorifies, and vilifies also; but in the end it creates its own reality, its heterogeneous but usually coherent version of events; and no sane human being ever trusts someone else’s version more than his own.”
― Salman Rushdie

Meredith Drew, Three Years Later

dans garden end of august 2013 024I met Meredith eleven years ago, when she lived in a renovated Arts and Crafts era bungalow in The Heights, a splendid Houston neighborhood. The house had a front porch, and a very small boy inside. The small boy played with everything, but had a true passion for living things, especially insects. In that house, the small boy hatched an egg of hundreds of Praying Mantises, who, of course, escaped their cage and exploded all over the walls, the bed, the floor, the jambs of doors: all surfaces of that small room were covered in tiny mantids.

My memories of that house were of how much I loved its dark wood, the kitchen with its funky tiles, and the artwork that was everywhere. There was an old leather sofa, paintings, drawings, an African mask, a sword or two, books, papers: everything that was in that house reflected the complicated personalities within it. Meredith and her son lived there with her husband, the man behind its renovation and its steady march to monotony. The colors disappeared, the landscaping was typical, and there was only one tiny blotch of color to distinguish the way the house was when they first arrived.

Meredith was my soon-to-be husband’s best friend’s mother. Meredith was disorganized, irreverent, opinionated, sarcastic, and she cursed a blue streak most of the time. She also had a fierce glint in her eye, and when she thought something was particularly funny or insightful, the glint combined with an upturned motion of her jaw, and she would nod as if what she believed was common sense to all, and hilarious.

I cannot count the number of times I cleaned Meredith’s kitchen, or tried to get her papers in order: she was inherently a creature of disorder, of mess, of clutter. Meredith had lived many lives before I met her; she had been married, divorced, raise two sons on her own, was an accountant for a huge accounting firm that later lost their influence during the Enron scandal, was remarried, and had a very young son who was about fifteen years younger than her eldest. Meredith loved history and families, she had a huge respect for her father, had a great Texas accent, knew many stories of the way life was when she was growing up outside of Austin, kept lists of good books with descriptions of why they were great, had amazing collections of everything you could want to peruse on a slow weekend day, and she had an open-ear policy for listening.

Last Sunday, I went with a friend to a friend’s mother’s funeral, and many people whose life she had impacted spoke up. There were stories about skiing and vacations and puzzles and dinners, but the common theme was that this woman had taken in all the lost children she had encountered along her path. Meredith was similar, and our friendship was a back-and-forth of giving and taking of what we knew the other one needed to know.

dans garden end of august 2013 031At the beginning, I saw Meredith as a tough as nails woman who had almost literally fought her way through life and was left standing. As the years went by, though, I began to realize that her tough exterior was a mask covering a very sensitive and uncertain soul. Sometimes I feel like one of the reasons that I am on the Earth is to be a friend to those people who are locked within themselves, and to bring them out. Just as old houses sit for years, asleep, before the right family moves in and fixes the porch and plants some flowers, many people sit, alone and closed off from those around them, even if their surface exterior would show you different.

Over the years of our friendship, Meredith helped me and mine a lot. She helped pay for and plan my wedding. She gave us gold to melt down for our wedding rings, and made sure the baseboards of our house were vacuumed before the wedding, much to the consternation of my mother and my soon-to-be husband’s mother, who wanted to stake their own claim as dominant women of the day. When we moved to New York somewhat on a whim in the early spring of 2005, she helped us pay our rent to our roommate, her son. When she visited, she laughed at the huge vegetable garden and how invested both my husband and her son were in it, a project they did not want to participate in during its inception, when I spent hours tilling the soil at the top of a giant hill in Croton on Hudson, New York. When we returned to Texas, she and her husband and their young son were living in a new, larger house, now in San Antonio, and I spent many hours drinking wine out of tiny wine bottles, the ones that come in four packs at the grocery store, sitting on the edge of their pool, under a canopy of wisteria vines.

dans garden end of august 2013 032Time passed, and my marriage fell apart due to many things, mostly a lack of an ability to talk to one another. We went separate directions but stayed in the same physical space, I think hoping that with time, we would find our way back, but we never did. In the early fall of 2009, we were divorced, our house had been sold, as had most of our furniture. I left the house I loved so well, with its native plant garden in the front, and huge vegetable garden with chicken coop in the back. At that time, I thought that Meredith belonged to my ex-husband’s friends, and although we emailed sporadically, we lost touch.

Later in 2010, sometime around May, my friend Angel told me the news that Meredith was very sick and had cancer and was living alone with her young son in an apartment in South Austin. With phone number in hand, I called her up and went to see her.

When I first saw Meredith, after all that time, almost two years at that point, I was shocked and afraid. She couldn’t use one arm and was very thin, and her house, of course, was a mess. Her young son was struggling in school and was barely leaving his room, and when he did, he would go on long walks in the woods wearing all black clothing, long sleeves even in summer. She had no doctor, no insurance, and no path to healing. She was stuck.

The first words she said to me were: “it is so good to see you.” And it was.

Luckily for me, it was almost the beginning of summer, and I was able to spend every day with her, sometimes for a few minutes, and sometimes for hours. Somehow I managed to find some care for her: an oncologist sometimes, a visit to the emergency room other times, a spiritual healer at others. I tried to clean the apartment, clean the kitchen, get her to eat a little bit. Sometimes, her eldest son and I would fight, like we always do, about what should happen. She became more and more ill as time went past, the cancer spread from her throat to her lungs and her stomach, to her esophagus and eventually to her brain.

During that time, I saw many scary things happen to Meredith and to her family as a result of being a 52 year old woman with cancer and no insurance. I discovered that there are no programs for truly poor women of non-childbearing age. Once, during a crisis, I took her to the ER for a blood transfusion, because her form of cancer seemed to leave her bloodless from time to time, and when we were about to be released, I asked a nurse what on Earth I was supposed to do with her. She said, “move to France?”.

Meredith wanted test after test, scanning for any information she could glean that would make her feel better. She laughed about many things, she fought with her family and friends. She grew angry quickly, because she was so tired. She didn’t want her sons to know how ill she really was, and how she was really feeling. One day, I asked her if she wanted to go to the emergency room, and she said no. I asked her if I called her nurse and the nurse said it was a good idea, would she go and she said yes. A minute later, when her middle son arrived, she changed her mind and said she was fine, so that he wouldn’t know how awful she felt. We took her anyway, into the hospital, where he became paralyzed in speech, and I had to tell the doctors and nurses what they already knew, which was that she was dying of cancer very, very quickly.

My memories of that time are hazy due to the intervening years and the intensity of the experience. I cared for Meredith to the best of my ability, and I know that I failed a thousand times where maybe someone else would have succeeded, but I also know that I tried my very best and so did her middle son who moved to Austin midway through the summer to live with her and her youngest son. He and I started sneaking marijuana into her food since she couldn’t smoke anything and would lie about it because she would actually eat when her avocados were spiked. He was quiet, stoic, calm, like a rock during those times. I will never forget his solitude, his way of clearly experiencing grief in his own, very individual way.

Close to the end, Meredith and I had a phone conversation in which she said she was trying to figure out how to “pierce the veil”. When I asked her what she meant, she said that she was trying to figure out how to send us signs so that when she died, if she needed to get in touch, we’d know it was her. She also requested that we get her stuffed, taxidermy style, so that she could still come to Christmas. The closer we got to the end, the clearer were her meditations on the meanings of life, and her most vivid, most intense belief was most certainly that the the individuality of the soul of a person was the most beautiful, mystical, and wonderful aspect of life on Earth. Over time, her conversations about where we came from, in the universal belt of souls, or somewhere in space, or astrology, wherever it is, became clearer and clearer to a point when I knew she wasn’t afraid to die, but she really wanted the people in her life to know how much she cherished them.

When she was moved into the hospital, during the last week of her life, she retained her wit and her spunk and her vigor and her downright mean streak. She asked us to rearrange her room so that she could look at pretty things and nothing that was informational or had to do with being sick. During those last few days, thanks to morphine and the loss of her functions due to the cancer expanding in her brain cells, she began to travel through time and across the world on a seemingly magic invisible carpet. Sometimes she was in Asia, Africa, Australia, America during the revolution, in the air, on the water, on the land. Over and over again, though, she repeated how much she loved her boys. Three of them, each so different and yet connected to the Earth by Meredith, sat beside her and listened to her ramblings, her stories, as she slipped away from us, beyond the veil about which she had spoken earlier.

When she died, I was teaching in my classroom, and was lucky enough to leave and sit with her middle son, his girlfriend, and Meredith’s sister, with whom I had become quite close. Later, only Margaret and I remained in that tiny room with what remained of Meredith: her body, not her at all.

Once, a friend of mine told me that Meredith was scary, in a way. Meredith never was on the Earth, in a grounded sense. Meredith was of the Earth, a powerful, difficult, and dynamic lady who struggled, perhaps more so than most people, but who made her way through with stories to tell and curios to share. Meredith was straight up and had no filters; Meredith made mistakes, sometimes huge and sometimes small. I say this because, in her final moments, her feelings of love were all that were coming out of her, and that shows me that she really was a creature of love, after all.

Three years and two days ago, I lost my friend Meredith Drew to cancer. During her memorial service, I saw photo after photo of my beautiful friend, and learned many things about her life that, sadly, I never had the time to ask her about. So life goes; it moves so fast, and just sweeps us along with it. I was just sitting on my porch, staring at the stars, wondering what now, and I had to laugh, because I realized that if I called her to ask her that, she would just laugh at me and I would be able to see that glint in her eye clear as a bell through the telephone. So, I see it in the stars instead.

dans garden end of august 2013 037

Conversations with…

march 2013 4Somes Sound

I had a friend who I will call M. M was 52 when she died about three years ago, after a very short battle with a very intense cancer. M was my ex-husband’s best friend’s mother, and when we met, about ten years ago, we instantly became friends. At that time, she was living with her husband and youngest son in a wonderful bungalow in the Heights, an older neighborhood of downtown Houston: one of its oldest suburbs. The house was filled with artwork, and old furniture, trunks, animals, coffee cups, ashtrays, and M.

M was an acquired taste to many people. She could be difficult, she was snarky, she was wickedly intelligent, and had a wry smile that instantly communicated how she felt about any situation. She was genuine, she didn’t beat around the bush, she struggled, she never knew what to do, but always tried her best.

march 2013 8Precipice Trail

When I learned that M had cancer, it was about a year after I had split from my husband and about six months after we had divorced. I hadn’t spoken to her in quite a while because of the divorce, and I sort of felt like she was part of my ex-husband’s family, and so assumed that I wouldn’t see her again. But, when I learned she was sick, my heart was hit with what felt like a rock, and I realized that I needed to see her. I called her the next day, and told her I wanted to come over. It was near the end of the school year that year; the heat of the Texas summer already beating down on me as I walked through the parking lot of her apartment complex in South Austin.

When I walked into her apartment, she said something very simple to me. She said, “It is so good to see you.” And it was true; it was great to see each other. What was not great was that she was so sick that she was having a hard time using one side of her body and could not use one arm at all. Her apartment was a mess, and her younger son who used to be precocious and seven years old, was now sixteen and scared out of his mind, and expressed that fear by withdrawing and flunking out of school.

march 2013 5In the Woods

Over the next four months, I saw M almost every day, and tried my best to wrap my head around cancer, families, relationships, fear, death, illness, our failing healthcare system, courage, acceptance, grief, denial, and a host of other emotions. I took her to the doctor, I took her to the emergency room, I took her to a man named Francis the Healer, who let her lie on a bed and relax. It was at Francis’s that we had our most profound conversations. We spoke about love and life a lot. We spoke about the temporal nature of life, about what it was for and why it was important. We spoke a lot about me, and some of the time about her. M was an adopted mom of a sort, but she was more like that aunt that has always done her own thing, is irreverent and uncategorizable, who makes you uncomfortable sometimes, but who you are drawn to, like a magnet of life inside her just pulled you in.

M was tough. She was demanding, and most importantly, she was intensely protective of her three sons and how the situation impacted them. Denial is a serious and complicated emotion, and has a very important place when you are dealing with cancer. Denial comes in the form of your ex-husband showing up with $300 worth of organic groceries despite knowing that his ex-wife can barely eat anything. Denial comes in the form of renting a house with a crazy, winding set of front stairs knowing your mom is in a wheelchair, and planning on building a ramp so that she can get in an out of this beautiful house in a beautiful place. Denial is late night phone calls and emails begging someone to come and see his mother because she is dying, and him not listening. Denial is looking at your friend’s dead body in a hospital room, knowing she is gone, and not being able to leave her body because she hasn’t been alone, not even for a moment, for four months. Denial is fighting, from all sides.

Acceptance comes in strange ways, too. Acceptance comes in the form of arriving on the doorstep, even for two days, from across the country. Acceptance is not being able to speak in the emergency room of a hospital when your mom has to have an emergency blood transfusion. Acceptance is listening to a nurse explain to you that you should take your friend to France because there is no care for her at her age, without insurance. Acceptance is sitting on the stairs in that same house with all the steps, looking at photo after photo of your friend smoking cigarettes for her whole life, all the while touching her youngest son, just to let him know that he and you are physically here, in this moment.

I came up here, to Maine, for about two weeks, during that summer when M was dying. I called her one night, it was July 4th and I wanted to see if someone had taken her to the fireworks. We had this hilarious conversation in which she told me she wanted to be taxidermied and stuffed so that she could still come to all the important events in our lives, and that we could just carry her around to holidays and weddings. In this same conversation, as I was sitting on my friend’s brick patio, in July, in Maine, she told me that she understood what death was, that it was a crossing, but that she would be able to cross back sometimes and communicate in some way. She was in acceptance of what was happening and knew where she was going.

The day before she died, she was very in and out of her body and of time, she was traveling all over the world and through different eras. She said a lot of funny things, but the thing that she kept repeating was how much she loved her boys. There was no doubt, to anyone, about how much she loved them. No matter how much morphine she was on, or how much pain was racing through her tiny little body, she kept communicating that she loved them, she loved them, she loved them.

march 2013 11Looking Back at Mount Desert from Islesford, from a very tiny boat!

What does this have to do with me, now, today, in Northeast Harbor, Maine, after my two week hiatus, when I house sat in the woods with ten cats, and made jewelry, and mulled over my life? Tonight, I sat out on my deck for a while and stared at the stars, and watched the moon rise over the harbor, and talked to ________ (whatever you want to call it) for a while.

march 2013 10Moon Rise over the slowly melting Snow Mountain

While speaking to __________ tonight, on the deck, I asked the question: “why do I feel so lonely here? Why is it that this place is so lonely, so alone?” I love this place, but the sense of solitude is Great, and I mean great as in size, not value or experience. I feel, in my heart, that the loneliness here is part of the place, meaning that it is somewhat inescapable, and therefore, must be accepted into your heart as not a negative aspect, but just another part of the environment, like the wind off the ocean, the sculpted granite, the six month long winter, the call of seagulls from the roofs of buildings. My question of loneliness was more related to my own fear of closeness with others. In cities, there are so many people and restaurants and cafes and museums that you are never confronted with that truth of our own isolation, our aloneness in the world. You can be so easily distracted and meet so many people to have friendships with that you never have to confront the deep thoughts that come in winter, in Maine, on a wooden deck, on the edge of a harbor.

march 2013 1Somes Sound from Sargeant Drive

Coming back to my friend M: when I first saw M in that tiny apartment, when her arm didn’t work (Francis and M and cancer treatments fixed that, by the way), she told me that she knew how she had gotten cancer. I looked at her and asked her, “how?”. She told me that every morning she poured a cup of coffee and went outside to smoke her morning cigarette and asked the same question: “Well, what the fuck am I going to do now?”. She told me that she believed she got cancer because that was the energy she put out every morning, and the thought with which she started each new day. Whether you believe in that or not, she believed in it, and it resonates with me to this day.

One of the things that I have learned from winter, from Maine, from Northeast Harbor, is that this life, this time, is all about perspective. Sometimes the tininess and the loneliness of this place scares me, like tonight. And sometimes, the loneliness, the solitude, is utterly joyous because you feel like your slice of the world is wholly yours, and that the beauty of the moment is happening to only you, as if you can hold on to beauty and awe in your hand, heart and mind, for pure moments of time.

march 2013 3Somes Sound

Today, for the first time in months, I sat on the grass, with a cup of coffee, a book, some chicken salad and some french bread and had a picnic with myself in the spring sunshine. I had just spent two hours digging out a path to my new house, from the road. The path will be lined with rocks, and filled with grey pea stone. It will be a lovely start to my first garden in a long time: the first garden, really, since I sold my house back in the fall of 2009. So, perspective comes with time, and the memory of those who have impacted our lives in myriad ways. Perseverance comes in the last dregs of winter, knowing that change is on the horizon, that the sun is coming back, that green things are almost ready to peep out of the ground, and the warmth on the back of your head isn’t from a knit cap, but from the warmth of a new season itself.

march 2013 7The Tarn