Getting hit with an acute cancer diagnosis in the middle of the summer when I would much rather be selling amazing jewelry, meeting people, going out to dinner, and spending time with friends, has knocked me on my butt. My days right now, usually, involve sitting like a deity in my cozy bed, leaning against various sizes and configurations of pillows, with my trusty hot water bottle by my side.
This morning, I got up and grabbed Oscar and walked the loop around our property. I am feeling the need to mark time: to mark days that are passing so fast. How is it the 30th of August? This has been going on now for almost two months; two months ago, I sat at Blundt’s Pond in Lamoine with friends and felt…funny.
Nothing feels funny right now. This is one of the challenges of the moment: brave faces and all. I love when people come to see me and it it truly is sustaining me right now; this love force that I feel from friends and family. It is so amazing; I imagine it as this big pink fluffy cloud-spiderweb with little sparkles in it everywhere. It is carrying me through this most terrifying experience. I talked to my mom last night, asking if she is going to counseling to deal with this as no one knows what is going to happen and it has only been a few years since my dad’s death. I don’t think she quite got the message, but I will try again. It feels so odd to just not know what the next week, two weeks, a month, will bring. As my friend Meg said yesterday, this cancer feels angry and it moves fast. It is scary to feel there is a being in your body, totally out of your control, messing with your everything.
I have been wanting to write more here, on a more regular basis, but have been struggling with energy and focus. I am on a lot of pain medication, too, and the brain fog of opiates is real! We were staying with Erica and Aaron this week in Boston, and he got so upset when he saw the Fentanyl patches in my box of pharmaceuticals. I had to tell him not to be scared, that it is medicine when it is used properly. Fentanyl freaks people out. My pain specialist, Patrick the Angel, just upped my dose yesterday so I will have to really work on focusing from now on.
That’s something I can ask my care team to help with: how to keep focused on Life while treating for cancer. It is much harder than I had thought, this journey. Having cancer is unlike any other sickness I have ever had. It sucks!!! You heard it here first. But, people are super nice, more nice than usual, so that is a perk.
I miss creating things as that has fallen by the wayside lately. I have to get back into that groove, too, in whatever way is manageable. One of the chemo options given to me gives people almost-permanent neuropathy, and I said no because I am an artist and I must be able to create things; it is part of who I am. My friend Ferry wrote to me and said that even as Matisse lay dying and was not able to pick up a paintbrush, he had a team of mentees cutting paper, painting, and arranging pieces right to the end, and that would be me! I have to print that text out and put it somewhere.
There is so much ephemera, so much detritus of our little lives, lingering in corners, piles on tables, the back edges of bookshelves. What makes up a life?
Wishes –
my edema in my legs begins to go down and it becomes more comfortable to walk
my appetite stays pretty strong so i can have the calories i need to stay well
i am my kindest, best, most authentic self with everyone i meet
Gratitudes –
Cody – despite some hiccups along the way, he has become the most amazing caregiver and I would be lost without him
Friends and family who bring food so we don’t have to think about cooking, even though I miss cooking
The pink spiderweb-cloud of love that surrounds me everywhere!
It was dark. We had cooked lamb chops, “good lamb chops” that she had gotten from somewhere like Central Market. We cooked them on the giant, beautiful, expensive Viking range in Tina’s kitchen. Tina was out of town so she was staying in the big house and I went to stay with her. We cooked the lamb chops, 3 minutes per side and then two to finish them off, and I think we made a salad but I don’t remember. We drank light French red wine out of tiny beautiful glasses and I think it was our last dinner together.
I helped her up the stairs; she was sleeping in Tina’s room on the second floor of the old house. You had to walk up a tight, tourney staircase, so I walked her up and spent time with her in the bathroom as she got ready to go to bed. She washed her face and put lotion on her hands and brushed her teeth. She was so tiny; tinier then than she had ever been before. No hair but still that beautiful, beautiful face, that beautiful beautiful spirit that shone through everyday. I got her into bed; all the sheets were white, the walls were white, everything in that room was very light and I think she really loved sleeping in there.
The day we shaved her head, it was in that room, too; I think she had some sort of connection with that space. With how high it was above the ground, with how open and airy it was. She always loved a light-filled space. I looked in her eyes as I was sitting in bed with her. I could see the light of the lamp reflected in her eyes, and there were tiny white plates suspended in the black centers of her eyes. They almost looked like those glints of light that teenagers put in their sketches of characters when they’re first learning how to draw cartoons: these tiny points of light that are supposed to tell the viewer that their eyes are twinkling. But in this case her eyes weren’t twinkling, those little plates were matte, deep, solid somehow: they collected the light. I hadn’t noticed them before and took a while to stare at them and try to figure out what they might be.
After she went to sleep I went back downstairs and called Vonda and told her that Maryann’s eyes looked strange: that there was something floating in them. At the time I thought maybe it could be something to do with medication or cancer, I just wasn’t sure. All I knew was that there were tiny plates floating in her eyes. Later, I learned that those tiny plates were ammonia crystals floating in her eyes, teaching us that her liver was failing very quickly. She had been on chemo for so long, at that point almost 16 years, that the chemo had changed her liver from the sponge it’s supposed to be to something resembling a rock; nothing passed through, nothing was filtered out, and so the ammonia that builds up in our bodies naturally, everyday over time, had begun to build up in her body and was reflecting through her eyes.
Today I’ve been reflecting on my own current illness which also has some liver markers going on. I’ve been really thinking about Maryann and that time when her liver stopped working. Maryann is in my thoughts all the time right now; I am convinced she is around me a lot and sometimes I feel her here just watching me and taking a gaze and seeing what’s going on. But this time is different. I feel like she’s just out of reach, but she’s trying to tell me something but I don’t know what it is.
As I lay here on my bed having a day that feels like a setback, after watching a rainstorm, I’m just curious about everything. What am I supposed to learn? When I think about my dear friend Maryann, I miss her so much, but she’s right here. It’s so strange and hard to figure out.
If I could ask her and she could answer I would say what are you trying to tell me Maryann?
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.
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.
Kathleen Bowman is a person who lives in our small community up here in Downeast Maine, and a few years ago, she saved my life.
A few weeks ago, she and her husband came into the gallery with some friends who were staying with them. I didn’t say hi at first as I was talking to one of the friends who was gazing out the back of the gallery at the garden; there is a beautiful, luscious garden of hostas and rhododendrons and a small pond out the back of the gallery, and it is mesmerizing. He said, “do you know my friend Kathleen?” I said and smiled, “Kathleen saved my life”. He looked at me, quizzically, and we walked to go and say hi.
Since Wednesday of last week, I have been experiencing crazy edema in my legs and an increasing sense of pain in my back and abdomen, coupled with digestive troubles. It feels as if my whole system has become locked up and like it is stopped. It is a disconcerting and painful feeling. The swelling of my legs is scarier still, and makes walking uncomfortable. It also reminds me of a very scary time in my life when this happened before, when I was 18 years old, during my senior year of high school. At the time, for months, I hid the edema under the baggie pants that were customary in the late 90s. I loosened the shoelaces in my Vans to accommodate swollen feet. In Creative Writing class, I sat on the couch under the classroom’s tiny windows. I loved that class, obviously. One day, my teacher crouched down near me to help me and friends with something, and she noticed my swollen ankles under my pants and she asked me about them and how long they had been like that. I said I didn’t know and she asked a friend to walk me to the nurse. The nurse asked me the same question, and I said a few months. (Why? I was asked a lot during that time. I was afraid I was dying, and I was a sad and lonely child, and thought maybe it was better if I just did that, quietly). My mom came to get me and I went to the doctor and they admitted me to the hospital with a blood count of 1.7 (normal is 7). I spent the next two or three days in the hospital, and it was one of the most lonely times of my whole life.
I know my mom dropped me off at the hospital; she must have. But I was alone at night, and the doctors were assholes because I was (probably) a teenage asshole to them. I watched “Boogie Nights” and didn’t sleep and wondered if I was going to die in there by myself. I was on oxygen, which was great because I could actually breathe for the first time in a while, but thought to myself, over and over, “this isn’t good”. Some friends came, but the best ones didn’t, as it was too scary. It was too scary.
When the edema showed up last week, immediately I became scared; scared of what was happening, scared of the lack of answers, scared of the fact that this entire month I have just progressed into feeling worse rather than better, and scared of having to go to the hospital. My doctor told me on Friday that she wants me to go to Bangor Hospital and not MDI because it is bigger and has more resources. Immediately I was sent into an emotional tailspin that lasted until tonight, when I caught the truth on the wind and spotted the rise of a crescent moon that I could wish upon. I wished for it to help me alleviate my own suffering; my fear of being alone in a hospital at night. At the moment when I realized it, I realized how scared my younger self was all the time, and I remembered when Kathleen saved my life.
Kathleen is an energy worker of a sort; I can’t really tell you what she does exactly. She “tunes in”, she says, and then pictures show up in your head and she asks you to describe them. Sometimes you lie on her massage table and she does something Reiki-like that isn’t Reiki, moving her hands above your body. Over time, I began to trust Kathleen, and then one day it all came clear; the young version of myself, trapped in a cold cave that was made of stone. After a while, she was coaxed to come out of the cave, and the older version of myself was standing there, tall as anything, with a cloak or wings on, or both, and wrapped her in a hug and told her she was safe and could stay out. Tonight, on the driveway, under the moon rise, I remembered that moment, and sighed and cried at my littler self, the one who was so scared and alone a lot of the time. She didn’t deserve it, and she was just a child, and also, she doesn’t need to drive the bus anymore.
All of a sudden, I knew I would be ok and I just have to figure out how to be. I smiled at the moon and thanked her for always being there, right where I need her to be. I felt relief and that a 100-lb weight had been lifted. Now, my stomach is still killing me and my legs are still swollen, but I know I won’t be swallowed up in fear.
I have been in family therapy for the last few months with my mother and brother, and I have learned to appreciate my mom a lot more than I ever have done, but I have also learned that things were more messed up than maybe I realized. I was, after all, only seeing it from my perspective. Now I see things from my brother’s and my mom’s perspective, too. So even though I felt alone and scared so much as a child, I don’t think it was anything intentional on the part of my parents. My dad was actively seeking to maintain a series of delusional stories that covered up hard truths, and my mom was running around behind him, cleaning up. Tonight our therapist asked her why she did that for so long, and my mom said she was in survival mode until she started her career as a realtor. Our therapist asked, then, a harder question, which was “do you think you were really in survival mode the whole time, up until the point when he died?”. Hard truths. How can you parent your children when you are just trying to survive yourself?
Deep thoughts on a dark night. Everyone has told me that Lyme teaches you lessons, and that part of the disease is figuring that out. I learned tonight that I don’t need to be afraid of being alone in a hospital, breathing oxygen, watching bad tv, and being afraid of dying. When we all took care of Mary Ann, we never left her alone. We watched stupid tv and put on makeup and played with Instagram filters and listened to Tupac at 5am when the morning nurses came in. We took copious notes about treatment and laughed as much as we could and made the couch look like a hospital bed so we could be close together and giggle. That’s how my hospital stay will be, if there is one. If I am to die, and we all will, I won’t be alone. I will be surrounded by people who I love and who love me.
What a gift, what lightness. Let’s not stress when there is so much beauty in the world.
Here are the difficulties of mid-life. I will be 45 in a few months, and my husband will be 47. Today I was telling a story about jewelry school; a short story about a stone seller on a motorcycle with a backpack full of gemstones, and I realized how much I missed a sense of freedom.
Here I am, almost 45. I “own” a house, which means I pay a mortgage on it every month, and insurance, and taxes. I pay the same in my own life, and try to save money. I work at a friend’s gallery in the hopes of taking it over in a year or so, but all the while knowing that I am not earning what I need to earn to have the life I want. I feel like sometimes I am living in a limbo of the future: waiting. Why am I doing that when I could be actively pursuing the present? But I am doing that, too, going to work every day and enjoying it despite a greatly reduced salary. It feels unsustainable, and like something will have to shift. It’s like I want to live here, but living here is so difficult because there are so few people to sustain the place. So few good jobs, and a seasonal culture that tempts you to participate in it because you have so much time to yourself in the dark and cold days.
I don’t want to complain, and don’t think I am doing that, exactly. My husband who used to be happy and silly is hard and angry now, so upset about something I don’t understand. It’s like the last year has changed him into a stranger; someone who seeks to find something wrong with things. I seek to find things that are right, and to be ok with things if they aren’t. I get mad about the big issues, but all in all, I am happy with my daily home life. I don’t understand why he isn’t, and I don’t understand what is making him so angry.
His coworker was murdered a year and two months ago, and that has something to do with it, although I won’t know what for a long time; that kind of thing takes a long time to process. He became so emotionally entangled with his boss, a man who outwardly seems friendly and engaged, but inwardly has no capacity to talk about hard things. It is as if C feels that he is responsible for his boss’ emotions, when that is impossible. When he said he wanted to go to another, different job, the man asked him to stay repeatedly, and non-sensically, saying things like “I will make all your dreams come true!”. What does that even mean? Why would he say something like that to his employee; it is so manipulative. So is never speaking about the employee who was murdered, acknowledging her death, or offering support if support was needed.
I feel compassion and care for my husband, of course I do. In some moments he seems clear again, with a plan. Sometimes it seems like he wants the future to be exactly what he wants, and doesn’t think about what I might want, and how those things can go together. Sometimes, I wish we had never come here, and sometimes, I am thankful that all these things are coming out. Most of the time, lately, I am just very confused about the state of the big world and the state of my world, and how my world feels so different and off. I am thankful for the experience, but wish it could be different than it is.
Bah! An impossible want; to know what it is one is supposed to do with one’s life!?! How do you ever know?
The decade of the 40s has been interesting because I have experienced many moments of clear reflection. I like to think of them as plateaus of understanding; it’s as if my mind’s eye is climbing mesa after mesa, seeing clearly out to a horizon that, beforehand, I could not see.
Maine has always been a place where I am an artist, first. In Texas, I was always a teacher, first, and had been for years. I am beginning to appreciate the practicality of that choice of vocation, as i am really struggling here with earning a lot less than what I earned in Texas. But, I digress. As an artist, first, I am embarking on an adventure of making more work, finishing a writing project, and hoping to take over a friend’s longstanding artistic business. It is a time of big leaps, and I am waiting for my confidence to catch up.
The deep well, I think, is a series of experiences that have emboldened an already highly-developed struggle with self-confidence. People tell me this struggle isn’t obvious to others, but to people who know me really well, it is clear. The deep well of circumstances like: teaching under-resourced students for almost twenty years, moving a lot from place to place, being afraid of commitment and how that impacts decision-making, focusing more on achievement over joy and balance and contentment, the death of my dad, the death of one of my best friends, teaching during the pandemic, discovering two half-brothers at the age of 45, and landing again in a place that I love but is very challenging to make a good living, have all resulted in this moment of clarity. Ah ha! Here I am, after all these years.
I find it hard to internalize that we are where we are because of everything that came before. But, to me, standing on tonight’s metaphysical mesa and staring at a new horizon, this explanation is the only one that makes sense. What now must be is a decision as to what to do next. I feel in some ways that I am taking huge risks in waiting and seeing if the jewelry store dream becomes reality; most of these risks are financial and right now, financial risks seem bad. On the other hand, with our country in the throes of the changes it is experiencing, maybe this is the time to grab the dreams by the hands and jump. I don’t know? I know what I want, which is to own or co-own the jewelry store, be able to save money and pay for health insurance without total panic every month, take a month or two off in the winter and go somewhere nice and sunny, to be able to buy the land around us and run a campground for people in the summer, to pay off our house within 15 years; all of these are the dreams.
But the waiting, the realizing, the digging oneself out of a series of experiences to find meaning within them; it is hard and it is drudgery sometimes, and sometimes it is joyful, like tonight.
I am still sick with anaplasmosis and Lyme disease. I think that something about these illnesses forces me to think about a lot of things while I am sick; they are thoughtful illnesses, to be sure. This experience reminds me of when I got sick my senior year of high school and could do little else but be sick and hope I would get better sometime. I spent a lot of time sitting on the back porch, thinking about the meaning of life. I think I have some sort of understanding of the meaning of life, for now anyway, but I am thinking about a lot of other things. I think about the preciousness of life and time, how fast it all goes, what I want the next ten years to look like and be like, and what I can do to make the world a better place, a little at a time. It is an active time, this thinking time.
Last year, one year ago yesterday, the world lost an amazing person in Kate Shuster. She was a mentor and a friend and a shero and an inspiration, and she is very missed. She left behind lots of memories, photos, and writings, but her death impacted me so much and especially reminded me of the precious nature of our time on Earth. She made a mark, a series of them, in fact, and she left Earth very quickly after being diagnosed with pancreatic cancer. When she died last year, I went and sat on the edge of the ocean and thought about her, and Mary Ann, and Ken, and John, and Meredith; all the friends who I had lost before I wanted them to go. Sometimes I see them or hear them or feel them around the edges of this reality and I wonder what they think or want us to see or understand. I guess we will never know that, and just have to keep on doing the best we can.
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.
Recently, I learned that my father lied for my entire life (longer, actually) about being a father of twins who were born in 1967. One of them is coming to visit my brother and I in August, and I literally could not be happier about a thing happening; all I want to do is hug him and look at his face and take a photo with his tall self (during our first chat, I asked them both how tall they are as my brother and I are very tall, too).
Since discovering the existence of my brothers, I have been meditating on lying and why we do it. Why did my dad do it? Why have I done it (not very much, but I have been guilty of hiding myself and parts of my selves). All of the artwork I have done since December has been of eyes; iteration after iteration of eyes. I make them even when I don’t intend to make them. Eyes, eyes, eyes. Paths. Eyes surrounded by paths. The path of the past to the present. Yesterday I was in my amazing quilt class and we had a guest speaker, Zak Foster, and he said the most interesting snippet “There is no history, not really. There is only the present, and many, many presents.”
I loved that and it made me think. Right now I am going through perimenopause which is this insane journey of weird physical symptoms, overwhelming rage, quick tempered emotions that spin out of nowhere, pain, decisions that are hard for me to make, a sense of perspective, a sense of looking backward to look forward, and a sense that there isn’t as much time in front of me as there is behind. It’s a bit of a mindfuck.
Today I was getting an ultrasound to check that the Mirena IUD I had placed last week to provide me with progesterone is in the right place in my uterus. I had it placed last Wednesday and it has been very painful and exhausting: surprisingly so. It has reminded me that I am older now, and it reminded me of my past presents. When I was getting the IUD inserted, my cervix kept “running away” (the words of my midwife as I have no idea what this means but it sounds weird and sad) from her. She finally had to dose me with some extra Lidocaine and hold on to it with forceps. As I lay there waiting for the inevitable, this wonderful nurse Caroline was holding my hand and telling me that I was a wild horse running free on a beach, like the horses of Chincoteague from those old books. I felt my body tensing up over and over. They kept telling me to relax. I kept apologizing. I remembered something.
When I was about 20, I had this seemingly wonderful boyfriend named Ryan, who was so cute with long hair and who liked to go camping. He was from Midland and we went out to west Texas and camped alot on forestry land and cooked rice for dinner in the dark. We went on an ill-fated road trip out west one summer and discovered we didn’t travel well together, but in retrospect, my part of that was that I was/is/always will be desperately afraid of intimacy as I don’t trust it. The model I was shown was irregular and broken and weirdly sad and incomplete. Now I know that at its center was a big lie, which must have contributed, but isn’t the entire explanation. Either way, I discovered that I was pregnant with Ryan’s baby later that year and we both decided we didn’t want to have a baby then (I haven’t investigated how I feel about this just yet but think it is mostly ok with me). Ryan came in with me when I was having the procedure – the doctor must have been very open-minded? – and he told me later that I tensed up and looked like I was in the most pain of anyone he had ever seen. I remembered this vividly in that moment last week when I was getting the IUD. I couldn’t stop tensing up, I was very quiet, and I kept squeezing Caroline’s hand. At one point I asked if I was hurting her, and she said no, to keep squeezing, so I did.
Today I went and got the ultrasound to check its placement and everything looks good according to the tech. She was very nice and her name is Jane and she has been doing ultrasound for 35 years which I find amazing. While she was ultrasounding, she kept asking me if I was ok and I kept telling her that I was, but I was tensing up and was trying to get myself to relax. She took about 30 photos of my uterus from on top of my belly and inside my body, showed me the IUD (it looked good!) and off I went. I apologized to her and told her I had a lot of medical trauma associated with my childbirthing body parts, and she said she was sorry, and I told her it was ok as it wasn’t her fault.
After Ryan and I had the abortion, everything was hard and I think we started fighting about everything everywhere for months and the fights got worse and worse and worse until his neighbors didn’t want us to live at the co-op anymore. He moved into a little house with a friend and we kept trying but it was done, somehow. The fights got worse, and then 9/11 happened and I remember noticing there weren’t any planes in the sky when we sat on his porch. I was supposed to go give a presentation at UT about something and he was threatened and we fought and he pushed me into a wall. Later that day he broke up with me.
Last year, last May, a friend of mine was killed by her partner. He killed her, set fire to the family house she was living in, and then killed himself. He did make sure her horses were safe, which is some blessing in all of this. When she was killed, no one described the incident as domestic violence, only murder-suicide. She worked with my husband, and his boss never spoke about it again. It was as if they weren’t allowed to speak about it, but I don’t think that was what is was. I think he didn’t know how to talk about it, deal with it, wrap his heart around it, and so passively coerced his coworkers to do the same. It was horrible: it festered. Just before her death, Cody’s other coworker lost his father, and his wife thinks that because of the lack of space for discussion, that her husband felt that losing his friend and coworker was more painful, was worse, made more of an impact, than the death of his own father.
This week I went to Willowind, a therapeutic horse farm that teaches people how to ride horses peacefully and provides horse-based therapy to people who need it. A friend who teaches there had saved some horsehair for me, some special ashy blonde hair from a huge dappled draught horse named Abel. His fur looks like stone and he is a giant. I am planning on taking the horsehair and combining it with a design of a horse, making my friend’s mother and sister a necklace each. I want to do something with the loss of this person that is beautiful and special just as she was.
It has been a hard time of loss and of change. Growing older is not for the faint of heart, let me tell you. I have a hormone patch on my tummy that I switch left to right twice a week and it is helping me sleep better. I hope the IUD helps other things. My skin on my face looks better, my boobs are droopier and I want to make a corset for them and be a little radical. When I walk around my garden I am amazed everyday at my plants’ abilities to grow a little bit more. I wonder what it would be like if our only stimuli were light and water?
Circling back to eyes and lies, I have made (almost done with the third anyway) three quilts about it. They are all the same size, baby sized, and have various iterations of eyes and repeated patterns that are a little spiky. One is spooky, one is sweet, one looks like a flag somehow. I wish I could ask my dad why. I wish I could call my brothers ask them over now, but I have to live up to my name. I plan to make a quilt about us, but it is a bit of a dive into a deep well, and I am not sure exactly where to start. Zak told me to talk to my fabric, and that seems like a good idea. He also said to write, so here I am.
One of the things my therapist shared with me is that she thinks I don’t exactly know how to have a real partner, as the example given my brother and I was so fraught. I agree, but it makes me sad as, for the most part, Cody is so great and I wish I was better at being a partner. I am trying very much to integrate with him, to think about him, to not be afraid to share stories with him. It is amazing to me that we have been together for 10 years and there are still stories we haven’t shared with each other. I am lucky to have him and he me but there are lots of things that I have yet to learn to be a whole person and the best version of myself. I have always been so good with kids, but adults scare me quite a bit. The brothers, though, don’t scare me at all. Why is that?
How can so many worlds exist within our minds and our hearts at the same time? How can there be so many both/ands? It is a great mystery this life of ours. Nature gives me some rhythm which is comforting, but I want to be more honest about how I feel and what I am thinking about. I am too scared I think to voice these things out loud, but I think I can write them down. Maybe I can get to a place where they come out in a more formal way, but for now, making stuff and writing stuff will have to do.
I had baby chickens in my studio for a month or two and it got all dusty, so I am off to go and dust it and get it ready to start making things again. I have about 8 power rings and an amazing pendant that are asking to be finished. When will I move on from eyes? Who knows? They are beautiful and it is interesting how many types of eyes there are and how many colors. Right now the world and my place in it feel very mysterious and spinny, but I saw this poster in the hospital today that said “Bloom Where You Are Planted” and I thought I could start there.
I miss my friends who have left the planet before me; I wish I could talk with them. Their loss shows me how precious it all is, how fast it goes by, and how important it is to notice the weird little plants and how they grow in the sunshine and the rain. It is all interconnected, everything. All of my feelings of fear and inadequacy that came from early days somehow connect to the lie my dad told that he kept so well hidden. How different things can be when we are just honest, even if it hurts in the moment. Right?
It was a second floor, garage apartment in Hyde Park, in Austin. She moved there during COVID, sometime in 2020. She moved out of a house with people who had been friends who had become controlling and strange, into an apartment with a lease facilitated by a friend who was controlling and strange, but that is another story.
It was a second floor, garage apartment and you gained access by walking up a set of wide, wooden outdoor stairs. There was a landing, a tiny deck, at the top. There were a few plant pots with tropical plants, and a neat row of plastic Birkenstock shoes: colorful. There was a screen door and an inner, wooden door that was white with a small window. In it, she lived with her turquoise furniture, bone collection, shadow boxes, chandeliers made of old sets of silver and chains, and her plants. Her kitchen was small but lovely; everything was small and lovely. There were two rooms and a bathroom and a kitchen. One room was her bedroom, bedazzled with plants and specimens and interesting rocks, a chandelier in the corner. The other was a living room with a white leather hideabed, a round vintage plastic table, low to the ground, and two old chairs covered with interesting, faded fabric. In the corner was the preserved carcass of a roseate spoonbill, suspended in flight and hanging from the ceiling. There was also an antique dentist drill, complete with spittoon, which strangely had belonged to my first husband, years ago.
It was Texas in June, summer, hot, even in the morning. I was there in the morning, and we stood out on the small deck with the colorful shoes and tropical plants, and gazed out through the giant bushes that bordered the property, through their leaves, out to live oak trees and a pond in the center of the backyard. She said, “there is something weird in my eye. Like a cloud?” “There is a cloud in your eye? Both eyes? The same?” “No, just one, like a grey cloud at the bottom of my eye”.
Later it was discovered that her cancer had spread to her brain and that was when she had to start radiation and we didn’t get to come to Maine together, which I had been wishing for, but it is ok now that it didn’t happen. Earlier that spring we had gone to Galveston and stayed in an amazing apartment right on the beach, and ate at Gaido’s. Her face was a little swollen then, and she had no hair so she either wore fabulous hats or fabulous dresses with her bald head. It was the last Easter, and we didn’t know that. When she started radiation, they made her this crazy radiation face shield that she said she would bedazzle for Halloween that year. It really would have looked cool.
I will never forget the moment that I realized that she might have brain cancer, after breast cancer, lung cancer, and bone cancer. How exactly did she keep going so long? She is, after all, a miracle. Radiation made her mind muddled and she sort of forgot some things, but the most important things she valued stayed sharp. It was in October, before Halloween and her chance to bedazzle the thermoplastic radiation cap that her doctor told her that chemo had killed her, had destroyed her liver and she would soon die. She said that normal livers were like sponges, allowing substances to pass through them, and hers was like a rock. Quickly, her abdomen filled up with fluid and ammonia, there appeared little white glints, like lenses, in her eyes, and she died a month later. She told me that I had to start working in hospice, and I just finished my training and have my first patient. To be with someone who is dying is a great gift of mercy and trust, going both ways. Today I thought of her and saw her sitting in the corner in a hot pink dress, off the shoulder, bald head, laughing and clapping her hands. What a world. What would she think if she was alive today? I suppose she would be laughing and clapping her hands, about something.
Paciencia, Paciencia 