Tag Archives: death

Lyme Diaries – The Only Thing to Fear is Fear Itself

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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.

Ho hum

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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?

Perimenopause, Truthtelling, Medical Trauma & Intimate Partner Violence

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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.

Girl, so confusing.

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?

Free Weight

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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?

Cool Breeze, Bright Stars

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I was just outside, eating leftovers on my front porch. The house, when it was for sale, advertised said porch as a “farmer’s porch”. I am uncertain what that means. It is stained this bizarre burnt-orange UT color, which contrasts terribly with the sage green of the house. I hope to change it sometime soon. But I really hope to shingle the house soon, so that the color of the farmers porch doesn’t matter as much.

I was just talking to the stars, as I do. I was talking to my friend Mary Ann, too, about how much I miss her and wish I could talk to her. I wish I could talk to her about how weird everything got after she died and what bitches her friends were to me and to a couple of other friends. It was a mass disintegration and reorientation around a small crew of rich bitches. I guess it was inevitable. I asked the stars tonight: did I move to Maine, change my life, sell my house that I loved so much, because I hated my job and my best friend died?

The answer: not exactly. When I left Maine last time, it was like I left my art here. I still did art in Texas, but not to the same caliber or with the same intensity or regularity as I do here. Texas moves so fast and there are no seasons and there are so many highways; it is easy to just go with the flow and not examine yourself all that much. Also, in rapid fire over the course of three years, Cody’s grandma moved in with us, she died, there was a global pandemic, my dad died, and then Mary Ann died. This summer, Kate died and a few months ago, Michelle died and so did Brian. It has been terrible….let me rephrase. It has been bewildering to me. What happened that made Brian and Michelle so sad that they chose to leave us when they had taught me so much over the years? I can see Michelle smiling at me across a table, laughing, tossing her pretty blonde hair, laughing to keep from crying. Brian I can see spinning in a classroom, sharing music and asking us to think more deeply, to see connections. I remember the night he showed us True Stories when I was 15 years old, and didn’t understand it. I didn’t understand alot of what he taught us til I was in college. I have been listening to lots of Stars of the Lid and I feel that lessons are held within those songs, too….lessons to slow down and think. Think, and then do.

So Texas moved too fast, and Maine is so slow. We are changing into the fall and the air tonight is chilly and brisk and beautiful. The stars twinkle; there is a special fall-winter sharpness to the starlight that I love.

I am so thankful to have this time to investigate and think about what is going on with me. I am thankful to be able to ask myself: why am I so sad right now? Today I told my best friend that maybe I can’t be happy anywhere and he laughed and said something about how our dopamine levels are probably off or maybe we were both born in bad moods.

I think my new question is where the sadness is coming from; what is its origin story? Can I find it? I am sure I can. For so long, for years, it was my abortion that happened when I was 15 and the guilt I felt around it. I no longer see it that way; I now know that it was the right decision at the time. My new task is to examine these feelings of now and figure out where they come from. I think they have something to do with my job two years ago at Booker T Washington Elementary and working with two very challenging children. I didn’t know what to do, I am afraid that I hurt them, and I know that they hurt me, physically and mentally. I don’t even know how to describe those experiences yet, but am looking forward to working through some it with my therapist this fall. Cody says it wasn’t my fault and that I did what I was told to do and what I thought I had to do. I remember though, many moments when I just wanted to run away, to hide, to close my eyes and have it be over. Unrealistic.

I wonder what trauma response that experience touched on; it pressed a button to be sure. Lately I have been so interested in epigenetics and how sometimes our responses are not ours, but learned and coded in our genes to predispose us to bad moods, sadness, depression, anxiety, etc. I need to read about it. I am convinced there are generations of sad, scared people inside my soul. I have to tell them that they need to stay in their time period and let me explore mine.

I have been listening to old music, too. I wonder what is happening. What is the journey in my mind? I am hoping to remember to write down as much of it as I can.

Something New

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It is the end of August – the light is sharpening in its angle and the sun is moving ever lower on the tree line each day. I did something wild and left my public school teaching job about 2 weeks ago, and here I sit, in my favorite armchair, which I share with my favorite dog, wondering.

We moved to Maine one year and two months ago. Moving cross country in your forties is no small feat and it has been harder than I thought it would be. Peoples’ lives have changed and everyone has aged. Houses are so expensive, if you can even get one. Wages, if you’re lucky, just barely keep up with the costs. There is this other aspect of middle-aged life that I am curious about, too. It is the sadness; I wonder where it comes from, and does everyone share it?

With middle age comes a lot of experiences, and I think quite a bit of loss. There are a few people that I know who have made it to their mid forties without significant losses of loved ones, but, on the whole, it seems that the decade comes with an acceptance that people you love are going to die, and sometimes, a lot of them are going to die, closely together. Some of them will be old, and so their deaths will be understandable, but some will be young, and will die so quickly that it is like whiplash when they go.

My friend Kate passed away last month, a week shy of her 50th birthday. She died after being sick for 11 months. I will write more about Kate later; she deserves a deep-dive into my many times and experiences with her and learnings from her, but suffice it to say for today, her death scared the shit out of me. I didn’t know that that could happen: that you could be diagnosed and pass away in 11 months. It cemented a decision I had already made to jump into the unknown.

Here I am. Seems a little nuts. I own a house and in a week won’t have any health insurance. Somehow, it will work out. My husband is such a sweet person but he, too, is struggling with his own middle-aged sadness. I am not sure where his comes from, because he has trouble identifying his emotions. I think he was taught at a young age that emotions were a weak enemy to be vanquished and sent away; he did that, to his current peril. He says his brain feels like mud. I worry about him and want him to have dreams again.

This place is so seasonal, and here we are, in a transition again. A great friend and I were talking today about how fall feels early, but it’s possible that it just feels that way because we spent most of our lives living in a place with no seasons (Texas). I found a red maple leaf on the driveway two days ago, and today I saw an entire red maple tree on the drive home.

Today I drove into Northeast Harbor to go to work and was struck with a feeling that I don’t feel about it the same way that I did before. I am not certain that I have lost some magic feeling, or just that my feelings on the whole are a bit muddled right now. I am worried that I might struggle to be happy anywhere, and what that means to me. I am curious about how I find peace in accepting myself. How do I keep my inherent loneliness at bay? Or, alternatively, how do I welcome it in and befriend the feeling? My husband and I were speaking about that yesterday; about being people who have always felt lonely, and yet, are together.

Does it come from my 0-3 formative experiences? Is it genes? Is it the crazy stressful harsh and intense family of origin I come from? Probably. But what do I do with this?

I am working on a book that is based on many of the writings I posted here about 10 years ago. Over the next month or so, I will be removing those posts as this blog goes in a new direction; this version of me, not the older version. So many lives in this one life, if we are lucky. One of my mentors, one of my professors from grad school, told me to write everything down. I had said that to someone else, so I have decided to take my own advice, and his, and be here now, writing and musing. I think that I am finding some kernels of truth within the annals of my mind, but it is a deep labyrinth in there and will take some time.

Thanks for the love,

I love you, Michelle!

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With her goddess-like beauty (blonde wavy smooth 1920s hair with her beautiful bod! Her smile! Her laugh!), immeasurable intellect, wittiness, caring heart, and a little bit of sass-spice-wicked-impishness, I say goodbye to my friend.

She was lost in the blink of an eye, just. like. that. Gone.

The last two days I have been remembering Michelle and mostly what I find so funny and graceful and beautiful is that I can see her smiling and laughing across a table, like we are sitting at a diner. Her sister today asked me to say a prayer for her and I said I already was: prayers upon prayers upon thoughts and memories and pictures in my mind of her. When I was 18 years old, I thought Michelle was the coolest girl I had ever met. I had met her a few years earlier but actually became friends with her when I moved to Austin. She lived with her smart, cool boyfriend who I had loved and respected for years as one of the good guys in speech and debate. Their apartment was in West Campus, in a small building with a central atrium, open to the elements. They had a patio that looked out on it, and we sat out there and shot the shit. One night she taught me how to make everything I baked vegan by using a banana and some flax seed powder in the place of an egg. Her apartment was painted in all these amazing ways including a room that was matte light blue and metallic silver vertical striped.

Like all of us, there was tragedy as well as success and hilarity. I am beginning to wonder so much about our generation and our tendency toward a) having a history of traumatic childhood experiences b) coupled with addictive tendencies for alcohol, drugs, relationships, etc. There seem to be so many of us that struggle with these two issues, and I suppose that the addictions are the coping mechanisms for the childhoods. I hate to blame the parents, but there is something in our generation; kids raising themselves as parents were absentee due to work or their own addictive tendencies or whatever it was. Parenting now, speaking as a parent myself, is so different than the parenting that I remember experiencing.

Michelle was one of the first people who encouraged me to say “fuck off” to parents who said hurtful, shaming, or mean things to their kids. She was an advocate for the no bullshit philosophy that many of us now understand is this thing called “having boundaries” and “standing up for oneself”. In the 90s, this wasn’t common especially among women who had grown up in the South (or in English-Texan households, like myself). Her attitude of being ok with who she was was inspiring to me as a young adult, and I wanted to be just like her. She took me in like a friend or like a little sister, showed me a world that was new, and was always loving and laughing.

A few years ago she asked me to go to breakfast with her at Kerbey Lane, a small cafe in central Austin that used to be so easy to get into, and now, like everything else in that super-saturated town, is impossible. But Michelle was worth it, so we went and we talked about divorce and how terrible it is, about bad boyfriends and husbands (turns out that the smart, cool college boyfriend became a not great husband (there’s so much of that, too, but that is a meditation for another time), and about what we do next once we learn all this information. That was the last time that I saw her, and she looked great with her beautiful blonde hair and her smiling face and her laugh and her true beautiful self. Since then, we have talked alot, consistently every few weeks, chatting here and there about things both meaningful and not.

In August we lost another mutual friend who I wasn’t as close with but still respected as another one of the good guys of debate (they were few and far between), the person who introduced me to David Byrne and the Talking Heads, Henri Foucault and disciplinary power, the importance of developing our own mechanisms for complex, critical thought and the role that music and art have in helping us find joy and calm amidst desperation. It is terribly hard to know that Brian died the way he did when so many people loved and respected him. It is terribly hard to know that Michelle died so randomly, so quickly; we still don’t know her cause of death, but I know what I want to say to her.

Dear Michelle,

I am so thankful for the people who gave me the time of day when I couldn’t see anything clearly. Now, being older, I realize that I know very little except the importance of being available and loving to others. If I could say this to you in person, I would. I want to tell you how formative you were to who I am now and how thankful I am for that and all these years in between. When I found out that we had lost you in a moment that no one planned for, no one could have expected, all I guess I can do is pray and hope that wherever you are, your energy is at peace. I love you.

Love, your friend, Patience

I hope to take more time to pay attention to my life and the friends in it, spending the time wherever and whenever I can. The one thing I do know after living these last 5 years is that life is so precious and it can be taken away in a moment, a day, a few weeks, a month. You never really know. Grief-love is our ultimate learning experience, I think. That’s all for today.

Love Rising From the Mists

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When I tell you this story, there are some of you who will hear, some will listen, and some will know.

I feel that I am at the beginning of grieving the loss of my friend Beth. When I think of her lately, I can feel her hair in my hands; at the end of her life, her hair grew back as she wasn’t on chemo anymore. Her hair was brown and short and stuck up and out in places, but she still looked so cool with her yellow beanie. When she died, we realized that one of the colors was always yellow.

When we went to the doctor on October 4, her longtime doctor and trusted caretaker told her that she had lived well with cancer for a long time and that now she would not live well with cancer anymore. Her liver was failing; destroyed by chemo, it had changed from the soft sponge of bodily fluid filtration to a hard rock that didn’t let much in or out. Her tummy filled up with liquid and she felt ugly. She wasn’t, of course.

During that doctor’s visit, every experience that we had had together flashed before my mind. I thought of Port O’Connor, and Angela, apartments in Dallas, plastic jewelry, my first marriage, Cecile’s old apartment, and when she decided to marry “a rich guy”. I thought of searching for dead things and going out to Sunday Beach with Angela’s high school crush (or perhaps she was his?) and his two children. His son looked like a Troll doll and we loved him. He covered us with mud. We escaped without sunburns. I thought of walking through the Albert Memorial near Buckingham Palace, and traipsing past Embassies and through the city at night. I remembered getting dizzy in the jewelry room at the V&A and eating sandwiches on the lawn, watching naked British children bathe in the pool.

When we were told that it was the end, I remembered all the lived experiences; so much life! That is of course what I learned the most from Beth. I learned about LIFE. We once found a beautiful coffee shop with a caravan in the front garden in Port Lavaca; it was an old Victorian house and we never found it again, but that one time we found “You Can Heal Your Life” by Louise Hay and she told me about how and why Louise Hay wrote the book. On one of her last days, she said to me, “I wish my body could heal itself!”

During that last month, I spent most of my time with her massaging her and talking with her. She was in so much pain, although I suspect she didn’t admit the true force of the pain because she didn’t want to be woozy with Dilaudid. I massaged her because I wanted to keep her energy moving; keep her chi zipping around her body and soul. I spent a lot of time rubbing her perfect feet and legs and the middle of her back; this is where most of the pain was. I would also rub her face and her head and her shoulders. I would try to move the energy around, hoping it would keep her with us for longer.

One night I was staying with her and I looked at her in the half-light of the lamps. She was so tired but kept saying thank you, kept saying thank you and I love you. I went outside and called our friend Vivien. I said, “Vivien, I am worried. Her eyes look funny.” It was as if they couldn’t focus properly, or wandered when they shouldn’t. I remembered Maw Maw and how fast she slipped from us once she started. I will never forget her sleeping in that big bed with its white sheets and its golden light, falling asleep at about 7pm after I cooked us a dinner of lamb chops.

I have heard a theory of grief that I like and can attach to; the pain we feel is an alternative experience to the love we feel for the person. When my dad died last year, I felt like I was falling off a cliff into some bottomless space; there was no anchor. Slowly though, I found my footing again and realized that I must make my own anchor and remember all the tools he gave me, despite our many fraught years. This is different.

As I said above, when I think about Beth, really think about her (because I avoid it in my conscious mind sometimes), I can feel her hair in my hands, I can feel her hands, her shoulders, her tiny arms, her beautiful legs, and perfect feet. I can hear the sound of her moving in her hospital bed. I can see her eyes clouded with ammonia toxicity. I can see her moving around and saying thank you to me. I can hear her talking about cheese and visiting Italy. It is like she is becoming a part of me, of my body, as I feel all the parts of her. It is like she is right here, an ethereal version of a very real person. I think that this means that I truly love her, and she loves me, and this feeling, this painful transformation, is the process of grieving her loss. From now on, there is the Patience that lived when Beth was alive, there is the Patience during this grieving process, and there will be the Patience after.

Due to her immense grace, humor, love, and understanding, I suspect the Patience after will be a better person who is more in touch with faults and feelings, and with the preciousness of the moments.

When we went to the doctor on October 4, how would we have known she would die less than one month later, on November 2? She had lived so well, for so long. I wish I could hug her. But I can, because when I think of hugging her, I can feel her hugging me; I can feel her tiny body that cancer just ate up. I can see the light in her windows and the green of her houseplants. I can think of how great a hostess she was, and how she loved drinking dandelion tea those last few weeks to help her liver.

Beth, I miss you so much. I know you are here, in your own way. As Lilian said the other day, it’s like you are everywhere!

Griefburst

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“It is only by selection, by elimination, and by emphasis that we get at the real meaning of things.”
― Georgia O’Keeffe

Life is beautiful and life is painful.

Anger is a foreign feeling to me; I am uncomfortable with it, and it makes me feel fear. The fear stems, I think, from the concern that my anger may become uncontrollable, like my dad’s was.

Lately, I have been feeling a lot of anger. I now understand why people smash up their apartments when they get upset, yell, scream, and cry. I understand the 5 year olds in my care who tear up their classrooms. I am frustrated.

For years, for ages, for my whole life almost, I blamed my dad for everything wrong that happened. When he was dying, my brother and I thought my mom would get better somehow, after he died. But she didn’t. And I didn’t (this is most important). I realized that the problems came from both of them, not from just one.

Last night I realized that one of the reasons I am so angry with my mom is that she didn’t take care of herself, didn’t protect herself, let alone her kids. I had a grief attack Monday that started innocuously enough; I thought that Cody wasn’t listening to me and I became steadily afraid of him taking advantage of me financially (this happened in my first marriage), and devolved into me not really knowing what I was saying but refusing to end an argument that wasn’t based on anything real. At 11:30, I became scared and sad. I went into the front yard and cried. The dog looked at me with a worried expression. I came inside and cried some more.

The next morning, I realized that I had been acting like my Dad; after all, we are very similar. I lost control over my emotions, and what I was saying, and let it all come out in a way that made no sense. The next afternoon, I apologized to Cody and asked him to help me stay grounded.

My grief is stemming from the loss of my father, realizations about my mother, my relationships with both my parents, the recent loss of my friend Mary Ann, and my experiences at my job. I have never hated a job before, and, in reality, I quit this job that day when the 5-year-old brought a gun to school. That was the third week of school. We are almost at Week 16. In other words, I am overloaded and I exploded. I asked Cody to help me stay grounded, stay focused, to re-align myself by asking me to come back to conversations later, and to refocus by taking time to make something. I am finding that only when I am making things do I feel almost ok.

My grief is overwhelming. Little Patience is sad and tired. Little Patience feels that my parents tried their best, but they did a lousy job. Adult Patience hates the job I worked really hard to get, not knowing what the job really was in the present state of education in Texas. Present Patience, strong though I am, is incredibly sad that I was the person who brought Mary Ann to the doctor the day she was told she was dying, the person who arrived first the morning she died and watched waves of people awkwardly enter and leave that space and witnessed my friend Von be so sad and there was nothing I could do for her. I was also the person who packed up the apartment with and for her sister Pearl when all the other friends couldn’t see past themselves enough to help. I say that I am incredibly sad because I am, not that I regret being there in any of those moments; those moments just were and are incredibly, soul-shakingly sad.

Tonight I looked up the world’s strongest animal; it is the dung beetle, the scarab. When I was weeping with the grief counselor a few days ago, she said she felt my strength in all my stories. I am trying to get there; trying to cross that bridge from sorrow to accepting that God only gives us what we can handle. I have learned that when things are really hard, that is very difficult to remember.

A Letter Written the Day After Your Funeral

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She is neither pink nor pale,
And she never will be all mine;
She learned her hands in a fairy-tale,
And her mouth on a valentine.

She has more hair than she needs;
In the sun ’tis a woe to me!
And her voice is a string of colored beads,
Or steps leading into the sea.

She loves me all that she can,
And her ways to my ways resign;
But she was not made for any man,
And she never will be all mine –

Witch-Wife by Edna St. Vincent Millay

You once told me, when I described the trouble I was having staying asleep, that I should get up in the wee hours and write my memoirs. After all, that was what Patti Smith had done! I listened.

Yesterday we held the art show for you: the one you talked about every day until the day you left us. The art show had your shadowboxes and your bones and dead things, your bed, your cushions, some clothes, and most of the jewelry. None of your paintings made the cut; I am looking at one right now. I love the Fossil Hunters. I was interviewed by the videographer whilst wearing no lipstick, my Patagucci jacket, and frazzled hair. He said what I said was “great”.

Later in the day, I had had too much wine and was admiring Gary and Mary’s advanced 14-month-old baby ruling the roost like she was at least two, and we talked about past relationships and past lives and that time he saved all of us when we moved you out of the big house on the hill. Last week I learned about how the people you lived with really didn’t want you to move out; both parties the same, but different. Two locations, a similar feel. I will write my treatise on devil’s bargains later. Today is just a letter to you.

All day I thought I would come around a corner and see you laughing. It was unbelievably cold yesterday; fog descended upon the city and everything was cast in white-grey. The light was lovely. Vivian and I dressed the mannequin in a wonderful yellow-and-orange outfit; two kimonos and a yellow shirt dress and a necklace made of hundreds of charms. Behind the mannequin, in the window, hung jewels and pearls and chains, as well as the chandeliers. We made the room look like you had just left it after getting ready to go to a party.

I knew you, we knew each other, through so many different lives. Vivian knew you through more; she and I bonded during Covid over our shared moment in life. We bonded again during your death as we aimed to protect you ever still from people who sought to own parts of you, thinking your things would help fill the void. You, wiser than they, knew better.

I got to know your sister and her children over the last few weeks. She and I cried together and I became buddies with Aabah especially, laughed with Saabira, and stared into Faatina’s eyes, tearing up when I realized she will never know you because she is too little. Yesterday, I carried Aabah into the dressing room and said, “do you see Beth’s clothes?”. She nodded and said, “sometimes Mama gets very sad when she thinks about Beth”. I said, “we all do because we can’t talk to her anymore. But one day, you will wear this jewelry and that is how we will remember her”. She nodded.

Downstairs, just before we sang “So Long, Marianne”, Noah and I met and talked and he shared with me that he thought, he suspected, that you never wanted people to see the art while you were alive. We remarked on how mysterious you were in moments, how contrary. He said that he thought if you had had the show while you were still alive, you wouldn’t have come. I suspect he knows a thing or two (please see me winking to you here).

Yesterday I woke up and could barely get out of bed. It felt like the morning, at 4am on November 10th of last year, when I was woken by my mother to go to the hospital. I sat on the couch in the living room that morning and said to myself, “ok. You have to drive your mother to the hospital where her husband has just died”. I said to myself, “you can do this”. I said to myself yesterday, “you can do this”. I drank coffee and red wine and forgot to eat, but I did it. I went to sleep at 830 and woke up twelve hours later.

I said that yesterday it felt like I would walk around a corner and see you. Today it felt like I didn’t believe you are gone. I don’t believe it. You will come back, won’t you? I can talk to you again, can’t I? I know the true answers. I must remember you in my heart and mind.

Remembering you telling me you were having a heart attack (it was steroids) and speeding through tiny coastal towns until we reached a hospital, running inside, and announcing, “someone has to help me, my friend has cancer!”. The doctor was a jerk and we stole all sorts of things from the ER room, remember? Or when we walked through London trying to find strange buildings, and ate ramen and saw the city at night, and had cappuccinos under the Albert Memorial, and saw the jewelry at the V&A. Or when we went to Mexico and took mushrooms at Mimi’s mom’s ranch, drank too much cheap wine in Amanda’s trailer in Port O’Connor, cooked spaghetti and told our life stories in the dark, got stuck in sand bars, found skulls and skeletons, shopped at thrift shops, drank frozen rose on the one day you were angry at having cancer. So many more memories; the day we learned that you would die from your doctor, except we didn’t know you would die less than 4 weeks later.

I miss you. I miss you. I miss you. We had so much more to do. I will take you with me, see and feel you everywhere. The other day the sunset blew up the sky in orange and blue and I said, “Hi Beth”. I wonder if you are sitting on the couch behind me whilst I type, just out of reach; as I turn to check, will you slip away?

THE TIME you won your town the race
We chaired you through the market-place;
Man and boy stood cheering by,
And home we brought you shoulder-high.

To-day, the road all runners come,
Shoulder-high we bring you home,
And set you at your threshold down,
Townsman of a stiller town.

Smart lad, to slip betimes away
From fields where glory does not stay
And early though the laurel grows
It withers quicker than the rose.

Eyes the shady night has shut
Cannot see the record cut,
And silence sounds no worse than cheers
After earth has stopped the ears:

Now you will not swell the rout
Of lads that wore their honours out,
Runners whom renown outran
And the name died before the man.

So set, before its echoes fade,
The fleet foot on the sill of shade,
And hold to the low lintel up
The still-defended challenge-cup.

And round that early-laurelled head
Will flock to gaze the strengthless dead,
And find unwithered on its curls
The garland briefer than a girl’s.

To An Athlete Dying Young by A.E. Housman