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 is 5am on Wednesday morning. I have been up for about forty minutes, and then I just decided that some people just wake up at 5am, so why not be like those people today? Pain kept me awake alot last night, because I mis-calculated my pain medicine regimen and didn’t take a pill when I should because I didn’t want to sit up for 30 minutes waiting for it to be digested. Ho hum!!!! Here I am, at 5am.
Pain has been the most consistent feature of this cancer so far, although I don’t know if I am experiencing pain because of cancer cells, or because my lungs are surrounded by liquid that is swelling and pushing against them and against my ribcage. I am hoping for the latter, and that we can figure something out to reduce the pressure. I miss sleeping on my side, all snuggled up in bed with my husband, dog, and sometimes, a cat.
Last Friday I was diagnosed with a rare cancer called Mucinous Adenocarcinoma with Signet Ring Features. It is pretty funny since I am a jeweler, and I am experiencing the cancer cells that are shaped like pretty little rings from King Arthur’s Court. I am not sure what those little cells do in particular and need to do some more reading, but I get easily overwhelmed by Dr Google. Right now, as I write, I am moving a hot water bottle around my torso, getting relief from achiness. It works well, but I wonder if there is such a thing as a warming vest? (Just Googled – that’s a yes).
Last week I was diagnosed with cancer. I have cancer. I keep repeating that to myself and it sounds weird every time. I have cancer. I have cancer? What?
When people tell you that you have cancer, they speak really softly and nicely. They treat you kindly wherever you go (especially the pharmacists). What they don’t do is move nearly as fast as you want them to in finding a treatment plan that is going to work and make you feel better. That could happen ANY DAY, by the way. My first appointment is in two weeks. Two. Long. Weeks. What will I do with all of that time? Two weeks of waiting, two weeks of being patient.
Two weeks of writing? Two weeks of drawing? Two weeks of sewing? Two weeks of — anything. Perhaps during these doldrums of time when I am awake with achy-ness and pushing my achy bits against a hot water bottle, I can think about what I would like to do with this time. All of a sudden, I feel that time is ticking, time counts, time is fleeting.
How does one know what to do? Do I get angry? Sad? Vengeful? Wistful? Regretful? I spent the other night exploring regret and plumbing its depths. Do I do the same with the other emotions? It all feels exhausting and confusing and —- futile. But also, not. It is also eminently precious.
Goddammit.
I want to buy a new set of sheets because of all the time I am spending in bed. I ask myself: should I do this? Is this a ridiculous want? And then – why does it even matter? Because I have CANCER. Jeezum.
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.
It is 4:20am and I am writing because I have been woken up with pain, again; this has happened the last three nights. I am tired, and I am sad, and I miss days without pain like this. And the thing is, I am used to chronic pain. I have had it since I was 18 and was first diagnosed with the autoimmune disease that makes illnesses like Lyme and anaplasmosis and shingles so much worse for me: agammaglobulinemia. The constant, chronic pain that I have learned to live with is in my hips and my hands. But this, this is different. I don’t know exactly how to describe it save it is a burning feeling emanating from the bones of my ribcage, lower back, and abdomen, as if there is something slow burning there, like charcoal. It wakes me up and begs for relief. I took one tylenol and two iibuprofen per instructions, and now I wait, as I took 2 gabapentin before I went to sleep.
The doctor’s assistant told me on Friday the pain could be the pain of the bacterial “die off” which I find gross and rude (on the part of the bacteria). My tummy is distended and I have had a stomach ache now everyday for three weeks. I can’t put any pressure on my stomach at all without feeling a lot of overwhelming pain. I feel terrible about this as it means it is hard to hold my husband’s body at night, and hard for him to hold mine, without causing discomfort. Pain is alienating on top of being sad and frustrating.
This is a short entry, written in the early hours of a Sunday morning. I do not know what to do. I surrender to this, but it does me no good as the surrender is simply because I am lost to this pain and lost to a real solution to it. During the day, I can manage it with medication, but at night, I try to sleep. For the first three weeks, it was like my body turned off at night and so did the pain, but no more. I hope we are reaching the end of this, if not, I am worried that we will have to do something different; more medication, different medication, more impactful drugs than what I want to do.
I said this the other day and still think it today; I am so thankful for modern medicine as if we were in the olden days without antibiotics and pain medication. I would be lost. But then I read that the first case of anaplasmosis was diagnosed in 1993 and wasn’t even fully identified til 2003, so it didn’t even exist in the olden days, thank god. I just googled Lyme disease and it has only been around since 1975 so, big whoop, these diseases are of the modern age! I am sure though there are lots of diseases that are hundreds of years old and are miserable without medication.
I am hoping the meds kick in so I can go back to sleep. This is a sad moment, but hopefully it is just a moment that will pass and I will remember it but not dwell on it.
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.
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?
Camping in Lamoine State Park and being close enough to home to come work on projects
Planting huge amounts of squash plants and expanding the garden
The stars!!!
Time and thinking about things differently in terms of the past and of self
The birds that fly around our house and land all the time and eat all the birdseed
Life is harder than I had expected as a younger person. People are complex and all these things happen to us, and they are almost all unpredictable. It is all about how we respond: that is what matters. It is also really hard sometimes to be my best self. My mom’s neighbor, Mrs. Meryweather, is almost 91 and has taught me so much about all of this. She has taught me to garden and been an open book and a listening ear. She makes me laugh and I honestly want to be alot like her when I am that old, and even before. Her husband was equally wonderful; they are quite a pair to shine this experience of life upon, having done so much good for everyone around them, in small ways. That’s all I have to say tonight. The garden is gorgeous and I am happy to be busy with that and everything else. ❤
For awhile, I looked in the mirror and I didn’t recognize myself; who was that, staring back at me with little wrinkles everywhere, eyelids that are changing, a worried brow, gray hair? For a while, I knew that it was, indeed me, but a me that somehow had changed. Now, they have come together and I see the same old face in my current new face.
This blog has existed for about ten years, and so much has happened in those interim ten years. For a long time, I was good at writing regularly, at night, by myself, in my house. But then ten years ago I got together with the man I am now married to, and my evening behaviors changed. To me, writing is a solitary act. I really don’t like to do it when anyone is home, even with the door closed. I somehow feel that it is important not to be interrupted when channeling whatever this is.
Here I am today, writing stream of consciousness style, so please bear with me. Today is my friend Mary Ann’s birthday and she would have been 46. She died two years ago. She visits a lot, but we can’t talk anymore, and that is what I miss the most. I also miss talking to my dad, as we did during his last few years of life. We had had a lifetime of fights (since I was a teenager, so half a lifetime I guess), that we gave up sometime after I got married and we moved Maw Maw into our house after she had a stroke. Taking care of her made me realize that our lives are very finite and we can leave the planet oh so quickly. I vowed to never talk to my dad about anything important ever again, and we began talking all the time.
Today I am thinking about his first, secret-to-us family in England. What is weird about this iteration of thinking, after now knowing for about 2 months, is that I feel the most compassion for him that I have ever felt. I never could feel this compassion for him in life because he never told us about this thing, this majorly big issue in his life that explains so much. When I asked my aunts about him in 2017 and they told me they wouldn’t tell me, I thought all kinds of things.
I thought he had gotten someone pregnant and his parents were really mad. (Partially true)
I thought maybe he had gotten drunk and wrecked a car and his parents were really mad. (No)
I thought he had fought in Vietnam and had PTSD. (Not true; now we aren’t sure if he was ever over there, but he said he was, so……)
Basically all of the things I thought it could be were way more colorful and interesting than a breakup of a marriage in its infancy, and leaving the infants that came along with the young marriage behind, never to see them again. It’s just so damn sad.
Lately, sometimes, I get so sad. It’s like something is literally hanging around my neck with a weight. What’s in the weight? I don’t even know. Is it just me? Am I a melancholy baby after all? It would seem so. I used to be more fun though, I think. Why is this weight so heavy and how do I lift it? I don’t want to feel this sad and anxious all the time; emotions so overwhelming and a general feeling of no one liking me. And coupled with that, a crazy desire to keep everyone happy so that I don’t say things when I am angry or sad or irritated or when I need to. Those two things must be intertwined; some ouroboros that is.
Earlier I was talking to a friend of mine who lives in Texas and we were talking about how reflective the 40s is. This decade is wild and whack. I don’t understand how the shift is perhaps a bit more money in the bank, or perhaps an investment (house) or something, and then people start to die? Right now, I think this trade off, this change, this phase, level-up, or whatever you want to call it, is bullshit.
I also accept that everyone dies and literally they have to die at some point. It just seems that it is weirdly becoming a regular part of life, and I am having to adjust to it and “deal” with it, and try to understand it and be at peace with it. One of the things I learned when Maw Maw lived with us is that death doesn’t scare me. I think I knew this, as I when I got very sick in high school and didn’t die, I think I chose to no longer be frightened of it and be open to it all the time. When Maw Maw was dying, a day that I haven’t written about yet, it was very weird and mysterious. Watching someone leave the planet “is NOT like in the movies” (I said this over and over at that time).
Why can I not seem to get out of thinking about Maw Maw, my Dad, Mary Ann, and my friend Kate (who died this past summer). I am shaken by Kate’s death; I always thought she’d end up working for the federal government and be interviewed on 60 Minutes or something. Mary Ann I just miss. My Dad I just miss. Those two were my phone people; I spoke to them almost every day. I haven’t had my phone people in over 2 years, and I miss them. Maw Maw I miss, but she makes me smile and laugh. She was old and she was ready to roll out. I just miss her, again, because it would be fun if she was here and we could watch a movie. They just seem to live in my mind right now; I am not sure what to do about that.
When I think of my Dad right now I just wish I could tell him that it’s ok, we know, and we just wish he would have told us because everything is fine. It happened so long ago, before he had even met my mom, and I know that no matter what happened, it was not an easy decision and I am sure he didn’t want to make it. My Aunt Margaret told me about his white wedding, and how beautiful it was, everyone in white dresses and my Aunt Helen was the flower girl. She told me she has photos somewhere and I so hope she can find them. I have a hard time imagining my dad as a 26 year old person. How was he ever that young?
I wish I could tell him that it’s ok because it is. It explains so much, almost everything. It explains why we came to the US, and why his family didn’t know that. It explains, perhaps, why we fought so much. Did he feel guilty every time he looked at me? Did he feel guilty all the time, ashamed, anxious, afraid, and did he transform those feelings into rage and anger? (Seems so). It seems so sad, what a waste of time and energy. My mom said that she would have welcomed the boys into the family, but who knows if they would have wanted that, or their mom. I know that with Cody’s situation with his baby mama, she was (metaphorically) driving the bus and made it extremely hard for him to see or have partial custody of his son. It took many thousands of dollars and hours of time to secure those rights. But, he did it, he chose to fight for them. Why didn’t my dad fight for his boys?
I can only imagine how sad he must have been, and that is how I have compassion for him. I wonder if he knew it wasn’t working when they were living in Scotland and found out they were pregnant. I wonder where they moved after that. Did they own their house or rent it? Was it near my grandparents or her parents or neither? How much was he working then, and doing what? I know that he was a cigarette salesman at one point down in Devon/Cornwall, but was that before when he first got back from Australia, or between Outward Bound and Noble Denton?
It is such a drag that I probably won’t know the answers to many of these questions. The tragedy of this story, or at least one of the big ones, is that the boys’ mum died the same year that he did. She died still with his last name, after all that time.
I feel better after writing a bit. Please bear with me as this all comes pouring out. I am so scared to let it, but it feels like a weight lifted when I do.
Grief, again. Grabbing hold of my heart and squeezing it in a vice. Some people describe grief as being shaken by a wild animal, but mine is a cold squeeze and I feel like I can’t scream out even though I want to. If I scream, someone might get mad at me for being too dramatic or sensitive or overly-emotional. If I scream, people might know and worry or be mad at me for making noises in quiet places. I said this to my therapist two weeks ago and just remembered it:
“If I look at it, then I may be sad forever.” Where does that come from? When I say it outloud or read it, I know that it is some part of my brain trying to trick me. I can’t be sad forever, and how would letting this out make me sadder? Perhaps it’s the weight? It doesn’t want to let go?
There is an old, leather-wrapped Jefferson Magnifier that years ago I stole from my parents and use it to read words and letters largely from time to time. As the moments pass and we get closer to the inauguration of the 47th President, I keep thinking about magnification, this time of ideas, rather than random passages in old books.
I wonder if the new strategy is to employ loyalists who won’t say much against, well, anything, and to wear down the resolve of those of us who still believe in parts of the government as good, functional, useful, purposeful, and necessary for our mutual survival as a country. I am consistently reminded, also, of the Batman movie in which Christian Bale is Batman and Heath Ledger is The Joker, and Alfred reminds Bruce Wayne that “some men just want to watch the world burn”. It could be that, too, I suppose.
I wonder how does someone advocating for the slashing-and-burning of the FBI impact me? Does it? What if the Department of Education is dismantled to pre-1979 laws. Would they go after those laws, too? What about IDEA? What about school lunch programs?
I wonder.
When I pull back on this philosophical magnifying glass, I see that this is both a detail and a long-term strategy that started way back when I was little and Reagan was president. So many big ideas had been codified into law during the 1940s-1980, and his administration wasn’t able to do much about it. But what about this one? 40 years later and a whole lot more vocal and indignant.
I hope that the federal government is not changed to a point where we can’t recognize it. I don’t know what that would mean for most people, especially young people and poor people and unhoused people and immigrant people. This last week’s news was emotionally draining for me, but I am trying to read the news about once per day. I do want to know about as much as the media will report. I hope they continue being brave and sharing details. Without them, I am not sure what might happen. I do remember that there were no press briefings during his last administration. Will that happen again?
This all so strange to experience, this shift in the United States. The shift is so dramatic as to be alienating and exciting but not in a happy way. The other side I think probably feels the same way except they are excited in a good way. This is so tiring; I hate that I am feeling so tired by all of it and I feel like my writing is not as clear as normal. But that is ok. Like one of my best friends said today, “it is all so fleeting”.
It is not everyday that you have a major life revelation, something that stitches some theories into the facts column of your memories, forever cementing but also altering your life. Last night, my mom sat myself, my brother, and my husband down to “talk about something for an hour” she said. Three hours later, we had learned that:
My father was married a very long time ago to a first wife, sometime around 1965
My father and his wife had twin boys who were born on 7 January 1967
My father’s first wife “couldn’t cope” with raising twins (on her own? with an unhelpful husband who “worked alot”? with perhaps post-partum depression that was undiagnosed?), so she moved back in with her mother and
They never spoke again
My dad’s family, who knew his first wife, who had been to his wedding, and who knew his twin sons, were asked to honor the request of no contact, which they did for 54 years, until a few weeks ago when my aunt told my mom she knew something but she also knew it would be hurtful. My mom asked her to tell her, regardless, and here we are.
For years I have wondered what precipitating event caused my father to lose contact with his family, for after this, he barely spoke to them for 15 years. In fact, my aunt didn’t even know that I was born in England, one hour or less away from where she had her second daughter, born one month before me.
In 2017, I went to England for my cousin Sally’s wedding in the Lake District. It was beautiful and I can’t wait to go there again. Whilst driving through London with Aunt #1, I asked her, “did something happen between my dad and his parents? Like an argument? Did he do something to disappoint them or something? And that’s why you all stopped talking?” She said, “It is not my story to tell. You have to ask your father.” Whilst walking through a town in the Lakes with Aunt #2, I asked her the same question, and she gave me the same answer.
In 2009, when I was getting divorced from my first husband, my parents came to see me. I was confused as we weren’t especially close at the time. Now, looking back on it, I suspect my dad felt that me going through a divorce would be very difficult. I know my mom was worried about me, but she said that they felt I was handling everything very well (later writings will go into how good of an actress I am – Oscar caliber). In my laundry room, my mom let slip that my dad had been married before and that “divorce isn’t that hard, eh Michael?”. This is when I learned he had been married before for about 5-6 years. When I asked him why he had never said this before, he said he didn’t think it was important. I asked him, “what, are you going to tell me that we have half brothers or sisters somewhere?” he said a definite “No.” He lied.
Why did he lie? To me? To my mom? To my brother? What happened and why?
Tragically, his first wife (first and second wives were both named Susan, oddly), died about one year after he did, in 2022. He was born in 1939, she in 1943. He died in 2021, she in 2022. He had his twins when he was 28 years old. I cannot even imagine what my dad was like/looked like/acted like when he was 28. My husband had his son when he was 26 and I remember what he looked like: an adultish person.
Thankfully, all of my dad’s siblings have told us we can ask them anything now that the cat is out of the bag. But sadly, both people involved are dead. Strangely, she kept Blythe as her last name all these years, as have done the boys. Why? If it was such a split, wouldn’t it make sense to change names or……….something.
Did he ever pay her any money to help raise them? Were they ever in contact? Why did the split even happen in the first place? Apparently my grandmother took care of the twins when she could. She always loved babies and was great with children. She also had to live with this condition of giving up her first two grandchildren, and, her daughters say, fought it until my granddad insisted. I cannot imagine how painful that must have been for her, for him, for his first wife. It just seems like so much pain, and I will never know the reason why, probably.
When I asked my dear Uncle Denys why this happened, why we left the UK and our entire family, when we were having tea after Sally’s wedding, he said, “it was a different time”. Maybe it was? What does that mean? Did he know?
This opens up so many questions. Is this the reason that we moved to the States, so that he would never have to deal with it? It seems so. Why did he never tell my mom? Why did she never insist on meeting his family before they were married?
Because, oh yes, my mom never pushed on meeting his family. He said they didn’t want to meet her, and she accepted that, despite that his 5 brothers and sisters would have loved to meet her, and did, about 15 years after his first divorce, when he was married to his third wife and living in Houston, Texas.
I have written about this here before, but sometime around 1970 my dad lost touch with his family and regained contact with them around 1985, after we had emigrated to the United States. My granddad was ill with progressive health problems, and we came to England and met the family for the first time. The aunt who orchestrated this meeting is the same that spilled the beans to my mom two weeks ago, She is truly amazing and a creature of love and acceptance. I love her so much. After the first English meeting, my grandparents came to Texas and saw us there. My granddad died very soon thereafter, in 1989, of cancer and heart problems. He had been a nuclear chemist and the exposure to chemicals damaged his body. My grandmother was diagnosed with cancer in the 1960s, looked around at her 6 children and her scientist husband who didn’t pay bills but knew how to (mostly) build an atom bomb, and said to her doctor, “I can’t die!” and didn’t until 1994.
What is bothering me so much about this story is the lie at the center of it; a lie that, to me, is wholly unnecessary. Why would he leave behind his children? What about his wife? Did he love her? Did she break his heart? Did he break hers? Yes, yes, and yes? We could have had two older brothers. (We think we have found them. One looks just like him, with eyes just like me and my brother’s. The other looks like my granddad, to a T. Round, bald head, round nose, nice smile.)
28. When I was 28, I was getting divorced from my first husband. I owned a house in Austin. Did he own a house in England? He always told me he sold his boat to buy his first house with my mom. Is that true? The trick of this lie is that the two people who were really involved are now dead.
This experience, which right now is only 24 hours old, has taught me that is never worth it to lie. Never. What would have happened if he had just told my mom about all of this, like we would all expect to have happen between two people committing to each other in marriage? Would anything have changed? Only one, to be certain. The lie wouldn’t have been there. My uncle used to stay with them, he says. My grandmother helped with the babies. My aunt was living with my grandparents when they split and she remembers everything.
My dad was always best in a group, at a party. In person, he was very challenging. He was avoidant, afraid of commitment, and angry. When he was confronted, he became so angry that he was scary. I suppose that guaranteed that no one would get close. He drank to excess, creating health problems for himself and his family. He died three years ago, and during the last year of his life, became very emotional. He cried alot. He said to me once, “I used to be a great man” or something similar. I told him, “you ARE a great man, Daddy”. Despite talking to my brother and I a lot over those last two months especially, and we did talk, a lot, he never told us about this. Was this his wound? Was it the reason that everything else happened? It seems so. By avoiding three people, or perhaps four (apparently my dad’s first wife’s mom did not like him and did not want them to get married), he dragged in 5 brothers and sisters and their partners, his second wife, friends(?), my mom, my brother and me. All drawn into a web of sadness that was never soothed or understood, just forgiven, because that is what you do when people die.
This is just the first time I will write about this. I had to get something down, some sort of recording of how it feels to know an answer, perhaps the answer, to the question that I have been asking about my father for years. I knew something had happened. I thought it was something in Vietnam. Right now I don’t even know if he was ever there. I don’t know very much about him at all. Today, I feel like I know more and less, good and bad. My takeaway from 43 years on the planet is that it is both/and yes/no good/bad all the time, together. They are mixed, hand-in-hand, like dough, chocolate, or clay.
In some ways, it feels like a circle has been closed, soldered shut with fire and time and communication, finally. I wish I could hug my dad and tell him I am so sorry that he felt that this was the best decision he could make at that time, and I also feel like shaking my dad by the shoulders and shouting, “WHAT IN THE ACTUAL FUCK?”. It is both. I understand the sadness and shame, but the lie? The behavior? My brother and I hope to reach our brothers and we hope that they want to speak with us. Beyond that, no expectations. Goddammit, Daddy.
p.s. I hope you know the reference in the title today. I think it is the appropriate spell for today. I wish I could shout it at my dad.
Paciencia, Paciencia 