Thursday, February 13, 2025
Call Me
Tuesday, January 28, 2025
Super Callus Fragile Mystic Existential Doses
I am thankful to say we have faired well through this latest round of fires...
I had completely lost my shit multiple times in absolute fear, triggered by my past evacuation experience. There have been multiple fires since the Palisades and Eaton fires that created a complete hell-scape for so so so many people. Erasing their homes, security and sense of identity.
I have never been a real organized person; I thrive in chaotic environments it seems. I like to have a lot to look at, be surrounded by and feel enrobed in. This makes for a cozy environment, a creative looking home and wild artmaking. Many times needing to protect the finished works from myself because I have created a huge mess making it. Storing it out of the way while I clear the clutter that created it.
I have been the final stop for the families photographs, a century of them! I hold the responsibility of caring for them and that responsibility has recently created a heavy burden. With each evacuation, I have grabbed them and have often forgotten my own wedding photo, or some other precious item. To help me work through the constant onslaught of sadness, fear and grief from the fires and the election I started scanning all the images. I can share them with my cousins and niblings. That way I would not be the only one to hold them and there will be other locations to view them/save them.
These photographs are some of my most precious memories with my grandmother and great Aunt, as they were the ones who made most the albums. Using the photos, or snaps as they called them, as a sort of trophy of times spent. They would have gotten on the social media bandwagon had it been around when they were younger. My grandmother printed everything, wrote the name of the people in them and until the prints were dated by the photo developers, she dated many of them and glued them into albums. Spending days scanning them is like spending times with my grandmother again, It turned into an emotional, sacred and bittersweet experience, as I was scanning the 100's of photos I started wondering if I was the only one who these images really mattered to. Does anyone else really care about them? Will these memories die with me?
Last week I went to a dinner with fellow women artists, hosted in a home of a ceramic artist. One of the attending artists lives in Los Angeles and spoke about her experience during the first days of the fires...recounting how on the second morning she went outside to assess the smoke and the sky turned dark and it began to rain pages from books! She said they were recipes, songs, hand written pages falling from the sky...these pages had traveled 10+ miles and were falling in her front yard.
I had read an article that more artworks had been lost in these two fires than ever before. The loss of artwork is monumental and has left many artists without homes, studios and their life's works both in process and finished gone forever.
I can only imagine it from what I had experienced but I can not imagine the profound sadness, fear and emptiness that the fleeing created in each unique experience. The loss of generational wealth, memories, personal space, HOME...I can empathize, but I am reminded it will last for generations.
We sat with each other, talking about our fears, concerns, shock and how to move forward from this point. All of us shared ways we disassociate when things get to be too much. At one point, I suggested we take a group photo with my instant camera. All agreed and after balancing the camera on many different surfaces and makeshift tripods, I was able to get a group photo. I mentioned the silliness was like being in a slumber party and that made all the ladies giggle with memories of time gone by. A photo was captured of me, bending in half to try and see through the viewfinder for one of the photos.
It was called the "human tripod"
Between the fires, staying off social media for a week to regain some sense of calm to focus, I came up for air just in time for the ICE raids today in my town! I know the next 100 days will just be shock after shock in an effort to make us all apathetic and so burnt out we don't respond anymore...but it is not going to happen. I know others that feel the same and it is in those people who I set my light to.
Although I am super callused and done with a lot of things
I am still fragile but also believe in magic
even amongst all the back to back existential crises
Wednesday, January 08, 2025
Shifting mindscape
The new year has arrived and with it all the stress and terror about what these next few years will unfold and release. So many unknowns and fears and realities.
It is like one thing after another, so surreal and so hard to really wrap my brain around...
I read somewhere during quarantine that the human brain wasn't designed/built to handle this many stressful events. I try and say that to myself when I am faced with a 4foot thick wall of stress and anxiousness and fear.
"I am not going to be able to manage all this into a neat orderly situation that I can fix"
I have found my time out in public is feeling more feral. I don't reach out to talk to people unprompted anymore. I purposely don't make eye contact with people, especially men; and when engaged I stare strait into their eyes with a "don't fuck with me, I don't trust you" energy.
I am feeling so many feelings and not quite sure how to process them anymore.
I fear I am not preparing "right" for all these new unknowable's, and unimaginable scenarios. I have stocked up on a few women's healthcare supplies, just in case. Our little bit of savings are being managed by professionals, I have asked my doctor about my medicines and if the medical system changed...he assured me that the medicine I am taking or would change to is currently manufactured and readily available. (not totally convinced but I can't manage everything) I think my glasses are next on the list to upgrade before too late here. I am trying to secure me, as being a woman in the US now has some potential real changes. It is hard to imagine this...like beyond unreal.
And right on cue, Mother Nature shows us all that nothing is okay and has started some of the largest and most horrible fires that my state has seen in a while. Soooo sooo much loss.
My fire app is sending notices every hour it seems, new fires are everywhere.
I sit here and wonder, stare and dissociate.
*****
In an effort to flip my mind in a new way and not cement those neuropathways...
I made an impulsive decision last week to buy tickets to a small circus that was visiting our town. I drove by the tent for a couple weeks on my way to predawn yoga, the lights of the tent glowed in such a magical way. I had The Barren make a detour one night so I could try and take a couple pinhole photos. Then Friday last week while I sat in the car at 5:45 in the morning, I bought tickets to see the show. I splurged and got the VIP tickets so we could sit as close as possible. Thankfully DH knew I was trying to self soothe and went along with me with zero hesitation. As I stepped out of the car it was like I let go of all my sadness, and forced myself to just embrace my childhood glee. I cheered loudly at the preshow performances and just about burst into tears with joy as I walked past the ring leader standing on a box playing the song from Amelie on the accordion, at the entrance into the tent.
It was an old style Italian circus; there were dropped juggling pins, kids freaking out, a horse that stood its ground and a single clown who ended up sitting on my lap! Simply put, it was charming and well worth the time.
Monday, December 09, 2024
Winter
The month is rolling by quickly...and I am thankful that I have survived the thanksgiving holiday event.
The Barren and I went on a road-trip for a week to visit family. We started what we knew was going to be a challenging week with an over night at my besties. They fortified us with laughter and smiles to carry in our pocket before heading into the eye of the storm. That was a highlight for me.
The motivation for me was to focus and make sure The Barren got time with his father, even though the reason we were gathering was for my BIL who has stage four cancer and is currently on drug trials and under medical care.
The setting was not ideal, you see, he, his wife and their teenagers (nephews) are also some of the many people who voted for the orange IDIOT and is proud about it. He had stated in the past that he was never offended by the confederate flag, or the nazi symbols. Feels women are here to serve men, and that his god is the only god.
Wednesday, November 06, 2024
...deep fear
I didn't sleep much last night.
When I closed my eyes I had visions of dodging cannon balls and trying to stay afloat in a disney park ride. I tried to self soothe overnight, saying things will look different in the morning...this is all going to be better...my techniques did not work.
I awoke to a literal nightmare...55% of Women and 40% of men nationwide voted for the MOST QUALIFIED candidate historically. My county is far more republican, racist, sexist and stupid than I knew and although everyone I know voted for Kamala, it didn't do anything except break millions of hearts.
I was in tears for hours and then decided to get dressed and leave the house for a few moments and do an adult task in a nearby town. As I was driving home I got an emergency alert on my phone:
EVACUATION ORDER: YOUR NEIGHBORHOOD IS NOW UNDER AN EVACUATION ORDER DUE TO A FAST MOVING BRUSH FIRE. PLEASE EVACUATE IMMEDIATELY
I was only two miles from home and raced the rest of the way, grabbed a few things, corralled the cats into a bathroom and texted my neighbor asking if she got the same text...she lives 50feet from us and she did not, nor had any other neighbor a few blocks from me,
I was convinced it was a cruel action on the part of the universe. Hubby came home after hearing my voice rattled and filled with fear, breaking under the constant pressure and stress. He came home and said in a calm voice, take this and lets pack a few things. I took the offered half xanax and have been packing things into my car calmly and the cats are hiding in the same room as me as I write this.
The last evacuation I was awoken from sleep and told to leave now, and we only had the clothes on our backs, our cats and laptops. It was a mess and now the sky has fire colors and thick smoke and the fire bombers are due to arrive in the morning…until then I am getting live updates about its movement as the night passes. I finally ate something only because I knew it was needed for brain activity. I am beyond heartbroken, broken and so so mad. I am not looking forward to the trip to visit family, as the person we are traveling for is a Christian fundamentalist who is celebrating today. And I am struggling to find any empathy/ sympathy or a crumb of kindness towards the family who all feel this was a golden move. The Barren told me to try and think of them as brainwashed…he is not looking forward to it either but I guess in a way to honor Kamala, when they go low we go high, right?!? Well, it isn’t working yet…and I am nowhere near close to okay about anything.
I vote 2024 as the most painful, horrible no good year.
Tuesday, November 05, 2024
The Quiet
It is quieter than normal today...
it is election day, the polls are open, the postcards have been sent, the calls have been made, the hopes are running at an all time high.
I woke up this morning, and before much thought, found myself doing 108 sun salutations trying to honor the energy I wanted to focus towards the day. Saying over and over President Harris.
I feel too many feels, thinking too many thoughts...
we wait
Tuesday, October 29, 2024
Stagnation
Sunday, August 25, 2024
Still
It took the Barren 16 days to clear the virus....16 days of sleeping on a couch for me, 16 days of fretting and worrying, but we got through it and he even had a consult with a doctor about removing his gall bladder and in the end decided to keep it for now.
Meanwhile my parents have refused any and all assistance my brother or I offer to them directly. I say this because I still book and confirm all my fathers appointments "behind the scenes", so he is prepared for each appointment. He has started seeing a psychologist, and my mother has pinned floppy hopes that it will "help him". I have become far more jaded and based on what he has refused to do ANY homework/self-work for all his occupational, speech and physical therapies...I would be VERY surprised if he creates the opportunity for himself to grow...but I would love to be surprised.
My relationship with my parents has been altered in a significant way. In fact I described it to The Barren the other day like this: it is like I have lost both my parents, but they are still here and I am left watching it all disappear each day in a new way. Like an extended period of grief and mourning. It breaks my heart in new and different ways every time I call them.
Yesterday I acted impulsively and decided to drive the 40 minutes to their place and offer a CPAP pillow I had sourced for my father thinking that it might make it more comfortable for him and then he would wear his CPAP longer than just a couple hours a night. I hadn't seen my parents in well over a month and when I arrived and knocked on the door; it swung open with great force and my father was standing there, without a cane or walker hunched over and glaring at me. Then said hello, looked at the pillow in my hand and said what brings you here? I said I had gotten this for you to try...I was..., before I could even finish my short sentence he responded...NO, DON'T NEED IT. (he said these words in a short, loud and stern way) I started to show him the features of the pillow and again he said "no, I will not use it. Thanks though" and that was that. Like we didn't say much else after that.
My mother, peeped around the corner, said it looked like a comfortable pillow and that she was sorry he turned it down. I was interrupting their dinner that my father was microwaving. I had not even entered the house yet... I was standing on the front porch still...
I left them to their dinner and got back into my car....I felt so much. I felt so...I was glad I had invested so much in my fathers recovery, but it was like a neon sign that I was far more invested in his recovery than anyone else. That is where I am trying to heal from right now.
When The Barren asked how the visit went I said "Abruptly"
I am struggling to get past all the trauma of the past three months. It has left me numb and uninspired and fumbling to find myself again. I have developed a new side effect, I am not sure if it is from the new infusion medication or stress but I am now learning about Burning Mouth Syndrome.
I feel like I am falling apart; all my seams have come undone and I do my best daily to wake up and focus on anything other than everything else. My therapist use to refer to it as the " chop wood carry water" of life. Picking yourself up and doing tasks in an effort to keep moving and giving yourself time to do everything else that needs to be done so you have space to work on yourself and your thoughts.
The Barren is at his annual music week away for the summer and is having an amazing time. I am so excited he has this time. He is with his bestie and they are learning all sorts of new techniques and music theory from the best of the best. I literally could not be happier or more proud of him for taking this time for himself.
I am home solo trying to pretend I am at an artist residency....and make something.
I have put film into several cameras and have shot some images...I have made some green developers and I hope to see if the pinhole photos I took today created any images. I have been feeding myself clean food, I have participated in a community garage sale, but only for an hour and a half, as the people who started coming freaked me out...hahah I have been writing down ideas and contemplating new materials. I am catching up on admin work for my website, etsy shop and wrote a newsletter announcing what the latest was.
I guess the whole reason for this post is that I am still here.
I still have not gotten the virus, I still mask in most public spaces, even with glares. I am still waking up with a smile each day, even when my whole world is tilted and new things seem to gather around the edges. I still have a sense of hope that one day I will be able to travel again and feel lighter in mind and mood.
I do hope that if you got to the end of this post that you are doing alright, holding on to the edge of your day...finding something sparkling in it....because that little bright thing is meant for your to notice and hold.
Sunday, June 30, 2024
Keeping Score
The Barren has been isolating in our bedroom-bathroom combo since Sunday last week. We are wearing masks indoors and sleeping in them. I am on the opposite side of our 1000 sqft home with the cats and the kitchen and access to the patio. I have been washing my hands so much that the skin between my fingers has cracked open. I have raw spots on the tops of my ears from the straps of the KF94 masks,
Wednesday The Barren started to feel less overwhelmed with Covid symptoms and was in a cheery mood. Then around 7 pm he said he didn't feel well. It slide quickly and extremely into him screaming in agony. He sat in that pain for four hours before I said, that is it we are going to the ER.
We ended up going twice in less than 12 hours. The first was blood, urine and a CT scan. The second was blood and an Ultrasound and more effective non-narcotic drugs.*
If you are keeping score, that is COVID, and 2 ER visits, 1 hour of sleep in 36 hours and no food. When we returned home, the Barren went to sleep and I slowly fed myself and sat outside while the sun began to set and dissociated. So that was one WEEK!
He remains COVID positive and I remain COVID negative. He is quite blue today, which completely makes sense and I am trying hard to keep a stoic face and the mood floating. Suggesting silly conversation topics and encouraging a micro masked walk, which ended in him being winded, but glad for the time outside the house.
I can honestly say I see how it was for him all these years. Witnessing me in pain, from endo and my own gut issues. I feel the same helplessness, and the fear of being too far away in case I am needed at a moments notice. I think it unlocked a new level of our relationship. When I was suffering, I was only really able to view it from my vantage point, seeing how he stood by and supported me with gentle touch and his presence. I am not even able to touch him, I sat outside his room pacing as he was screaming in pain asking quietly, where it hurt and coaching him to breathe. It is was ridiculous.
I rubbed his back in the ER, and sat beside him in the isolation room the second time. I watched how the doctors treated him and advocated where I could. It has been exhausting and I really have nothing left in me. I think my mallet head for my whack-a-mole fell off and rolled down the street. I am too tired to find it. I am feeling broken and sad. I try to think of this as an opportunity to remake the situation. Blossom like a phoenix or some other stupid cliché...but really all that matters is him and his health.
On Wednesday night, just as his pain began I got a text that my dear friend went into surgery to remove her kidney as it had developed a concerning lesion. Thank the goddesses, she made it out without complications. Now she waits for those new organs.
As I sat in the sun this morning sending a text to my mediation teacher that I would be missing class and why, I thanked her for her guidance in teaching me ways to calm my mind in stressful situations, mantras for healing not only myself but anyone who needs healing. She replied a reminder to take it one breathe at a time and that we possess the weapons of patience and peace.
* his diagnosis is an inflamed gall bladder with small stones
Monday, June 24, 2024
Always Responsible
I was sitting quietly in resting pose after a challenging yoga class and started to break apart what was bothering me the most. Like triaging my feelings and trying to make them make sense.
Mind you I have a few dishes spinning in my life and so I understand that feeling overwhelmed is a natural place to be; in fact expected. The Barren mentioned to me the other day that if he didn't know me and the "behind the scenes" reality of me, there is no outward sign that I am struggling.
I am the type of person who will volunteer if no one else steps up, I am the one who will snap into fix it mode for most anyone. It takes great personal restraint to not step into many, if not all situations, sometimes having to have a talk with myself justifying why I need to step back and not forward.
If I don't do X or Y the world will collapse and it will be my fault. If I pick a place to eat and the service is bad it was my fault. If I don't buy the recycled paper it will be my fault that additional trees are cut down. I didn't triple check on that person, if they had a bad day it was my fault, I could have shifted their day, mood or feelings about themselves.
It made me wonder about not only myself, but why I am like this ? Why am I the one who is responsible for everyone?
Perfect example: this whole nightmare with my father accident and recovery. I knew no one else could/would step up to help my parents, so I did. Without a second thought I abandoned everything, hyper-focused my path for rehabilitation and got to work researching day and night. In all honesty, I was terrified I would not think of everything to repair what was broken and that someone would call me out on it; and claim I was a horrible daughter.
When family, who was not involved in the day to day would come in with suggestions, I let them know that I had already addressed those things, they had already been accessed. Fearing that I had left a stone unturned, and a soft part vulnerable to being attacked, but I hadn't, I literally thought of everything. I fixed all the squeaky parts.
As of late, one member has a call into the same medical social worker that visited before and deemed everything done and there was nothing left to do. My mother told the family member it was fine to call, they feel as though they are "helping" in a way that makes things better for me. My mother is passive to this person so she goes along with whatever they say. I told them "I invite you to call whoever you think might help them in a way they would like to be helped" (not sure they picked up on that nuance of words)
When my dear friend was hospitalized and told she needed a new kidney and a heart, I immediately thought, can I donate mine? I mentally volunteered mine, before researching if it was even possible with my chronic illnesses. Turns out I can, but I am at deadly risk of infection and it might not go well for me, the donor and I need to stick around to continue to care for the others. So I sit in that sadness of feeling useless and worry for her.
Most recently, family has visited and "checked" on my parents...concerned that my mother is not sleeping enough, not taking breaks, my father is not following directions, ignoring homework. I sat patiently and listened to them pick apart everything and in response answered each of their questions calmly and completely with detailed information about doctors, parental responses, therapies etc. No one has asked how I was, if I was sleeping, if I was mentally okay. Instead I just kept my head down and kept making lunches and transcribing doctors appointments and making new ones.
As of this last couple weeks, my parents have asked me to stay home. They want to see how they can manage on their own, which I think is great! I have set a schedule for them, held their hands while getting my mother (the driver) acquainted with where everything is, where to park, how to get back home etc...but this transition did not start smoothly and began with "don't come anymore". It was like having the door slammed in my face...I put that aside and respected space and time and choice of words and have stayed "away" except I still get daily calls asking for aide in remembering calls, appointments and hearing my mother sound off and cry over the phone about how frustrated and tired she is of my father and his lack of motivation and desire to "get better"
Then yesterday, after 4 years of protecting ourselves....The Barren went to a Noah Kahan concert with our goddaughter three days ago and didn't wear a mask and he tested positive for Covid. I called and told my brother that I would miss an eye appointment for our father this week. He in turn told our parents that hubby tested positive and when she called she told me to be careful and then proceeded to start crying about my father frustrating her and how she will manage. I had just returned from the store in an effort to feel less panic from this virus and trying to think of everything we might need for the next few days, purchasing 10 at homes tests for us for the week. I have tested negative so far.
Life seems to feel like a runaway train right now...or whack a mole, I'm going to try and see it like whack a mole, it is a funnier version and people usually smile when welding a mallet.
Saturday, May 25, 2024
My oh my
* free writing to try and triage my feelings*
I have time at home today, my car is being serviced, as it now has 280,000 miles on it. I used to commute everyday to the town my parents live in and then when we quarantined I stopped. Now I am doing it again, most weeks. My father has graduated to out patient therapies, no more home therapy visits.
So that is progress, but he still has short term memory loss and balance issues. I am there sometimes 5 times a week, sometimes three days so I can go to my doctor visits and get a yoga class in and cook and clean up my home...and if it works out, see and snuggle my hubby.
I set up my parents with all the visits for outpatient therapy which has them attending until the end of August, as well as a monthly membership to a non-profit that specializes in brain injury. My father attends in person classes for brain workouts, physical fitness and group support. My mother attends as well to watch and sometimes participate too. I have her set up in monthly peer support group and have paved the way for her to access additional resources for more therapy as well as respite care should she choose to access it.
She has spent a long time putting herself in the back seat and as gently or forcefully I offer to assist her with getting her medical appointments up to date she pushes back and keeps things very close to her chest. So I struggle daily with explaining things over and over and over again to her. I am often her therapist explaining how things are not ever going back to how they were and that this is the new normal. She asks again hours later, like I am that magical fridge that you open the door to and new things appear. As you would imagine this is exhausting, heartbreaking and I have put all the rest of my life on hold while I set this all up and get it rolling into place.
My father doesn't do what my mother hopes for and my mother doesn't accept/realize this is not going to magically change. So instead she just keeps her teeth locked into her desires and refuses to listen to the present, instead she hyper focuses on things he is doing "wrong". When I was there last they were bickering the whole time, and it was beyond exhausting to witness.
My mother was mad at something my father couldn't answer and he was confused what he had done wrong and then eventually was just confused, as he had no clue what was making my mother mad and snappy at him. She in turn felt that he was avoiding the topic all together. My mother has two senior cats that are 17yr old and are having accidents from time to time. My father suggested it was time to "get rid of them" my mother was very hurt by this (understandably) but didn't consider the source and so she just held it as a personal attack. She told me she held her tongue and didn't say what she was thinking which was "maybe we should get rid of you too" So that was a right move on her part...and the day progressed like that. They attended a peer group later and my mother said that my father had a great time and he told me he had a great time and then when asked the next morning, he said he didn't. And so it goes over and over.
Meanwhile I am feeling less and less visible. When my dad finally came home from rehab, we were focused on his safety, and we still are, but are starting to relax a little, but as this was all starting I got an avalanche of news that I have been carrying like a heavy load:
My aunt and uncle were both diagnosed with cancer, the woman I used to nanny for who I am still very much in touch with, is now an adult and back in the hospital awaiting a heart and kidney transplant, my medicine had to change because I developed a complication to my Crohns/colitis, one of my closest friends decided they were developing feelings for me and couldn't bare that I was married and cut off talking to me and asked me to not reach out to them, a fellow woman I mediate with for the last few years had a her breast removed because she has breast cancer and is starting chemo and yesterday I was laid off from my job.
I have not been able to go to yoga regularly, make artwork or spend real quality time with my hubby. My birthday came and went with not much to define it from one day to another. I got a card from hubby telling me that he couldn't think of something special to do and that he loved me. When I mentioned how I was feeling to a doctor I went to see one for ear pain, it was just accepted as this is life. We are all overwhelmed and sad....get used to it. ( I mean it felt like that, I don't remember what she said actually...accept to not offer much)
My bestie flew into town to help her mom organize some things and we had a hot 18 hours together. I drove into town to get her, arranged for us to have a massage and lunch and then drove her back to her moms. It was nice to see her, but the whole experience was a lot, and honestly not very relaxing for me.
Is this the new normal? Is this what I am needing to fold my mind into for my life now?
I am spending today writing out these thoughts in hopes to release some of them and free up some mental space to rethink about what I want and how to hustle some new gigs that could land some cash into my hands.... mostly I just want to run away. I feel badly thinking that I didn't sign up for this and how deeply sad and invisible I feel.
Thursday, March 21, 2024
Tumbled
On Feb 25th while showing off his seashell collection to a friend, my father tripped on a brick in the yard and fell, face first, into the concrete patio. He knocked himself unconscious and it took 5-7 minutes to be revived. Rushed to the ER via ambulance, it was determined that he had a brain bleed and was admitted to the ICU with a traumatic brain injury.
He spent 3 days in ICU and then an additional 2.5 weeks in rehabilitation regaining cognition, balance and speech (from brain to body). He was released home on Saturday of last week.
My life has forever been altered and spun out of control
With the exception of two Saturdays (which I stayed home to cook all day) I have been with my mother, as companion, advocate, translator, form filler, appointment maker, therapy coordinator, sounding board, personal chef and coordinator. I am also the main contact for all family to check in and ask for updates and information.
My brother made the 911 call to paramedics, after getting a call from my mother. He maintained calm while trying to revive our father. We work as a team. He has taken on all home alteration tasks, including ripping out and refurbishing their bathroom to make it safer and more accessible, opening walking paths in the yard and adding a rail to the front step, and any home repair that has arisen in the meantime. He is a business owner, so also has maintained his insane work schedule while also trying to be a parent.
We are both still traumatized from our past, when our grandparents lived with us because our grandfather had ALS and then our grandmother developed dementia.
We text each other all day, keeping things wide open in conversation.
My hubby has held down the fort here, mostly. I have on many a night come home to laundry, meal preparation, and home tasks that were left for me.
I am constantly telling my mother:
People do what they can do. sometimes it is what you hope for, other times it will look very different.
Today I was the villain:
I told my father that he will not be able to renew his drivers license
I read him his sleep study that showed he had severe sleep apnea, and needs to wear his CPAP with every nap and overnight sleep-time
I was the one who insisted he brush his teeth this morning, and then through my exhausted eyes handed him the wrong tube and he brushed his teeth with anti-itch cream. (it was remedied, and laughed about, but that doesn't change my mistake)
My father has seriously impaired short term memory now, as well as his balance, and he needs to walk with a walker. He doesn't remember how many times a night he gets up to pee, triggering the bed alarm so he can not go solo. I did an overnight shift on his first night home, staying awake all night to accompany him to the toilet and ideally allowing my mother to sleep, but that proved futile. My mother is a lite sleeper and was involved every time and my father is still confused why he needs the walker or company. He just doesn't remember. It is frustrating when he is angry at the attention, because he doesn't remember the fall or the rehab or the reason he needs a walker or wheelchair. He doesn't remember if he had lunch, or if someone visited him that day. He didn't remember a phone call he made to my brother an hour later.
I am glad to have the flexibility to help, honored in many ways to advocate for them, but I am losing myself in the process of helping and it scares me.
People do what they can do. sometimes it is what you hope for, other times it will look very different.
I am a zombie.
Thursday, January 25, 2024
Grief
I have found that my recent doctors visits are causing a wake. I am spun for a couple days after the visit or test. It seems to be more obvious to me now. Maybe it was always like that, but I wasn't as tuned into myself before...but it is like a neon sign to me now.
I can mask fairly well during the visit, but afterwards, it is like a crash. I want to cry and hide and be taken care of. None of which are realistic anymore.
Having to receive monthly infusions now has challenged my sense of self and belief in my strength.
Am I really a strong woman or have I just made myself into a character in my mind? A woman that can handle anything thrown at her. A woman that can balance all the dishes and dance steps. A woman that can smile no matter what is being said about her. A woman that can walk into any room with confidence and poise and carry on a conversation with anyone there regardless of the topic.
Now I feel like a shell, I feel broken and covered in duct tape to hold it together and no one seems to notice because I have enchanted them for so long, they can't see me any other way.
When I saw my doctor last I broke down on the exam table telling her I was overwhelmed and she told me to be thankful of all I have. It felt like a slap in the face.
When I started getting my infusions over a year ago, and all the tests prior to that, I had drawn a line in the sand, that I don't want needles in my hands. I had a horrible experience many years ago from an ER hospital visit where I got a series of small hard lumps in my left arm that took months to resolve. I was in so much pain from them that I told The Barren that I NEVER want an IV in my hand ever again. My line was upheld with one exception, my endo surgery back in 2012.
Yesterday I had to cross it again at my infusion with a new nurse.*

Tuesday (the day before) I went for an MR enterography. For mine, you have to drink two and half bottles of thick fluid that lights up your gut, and then they give you medicine to slow your gut down, and then inject you with contrast, and take a bunch of photos face down in a MRI machine. The nurse tried multiple times to get a line started in my arm, before declaring it done, all the while my left arm, was left sore, swollen, bruised and an unviable option for my infusion the next day.
*Hence the need to seek new veins.
When the infusion nurse said she'd be gentle and not leave a mark, I had to fold...I had to get my long fought for medicine. My self advocacy tank was empty, what choice did I have?
I quickly set into play a weighing of the options in my mind and thought,
Ideally this decision will not land me in the ER again.
A phrase I use far more often these days.

After she placed the IV she stepped away to attend to other matters and I shed a couple tears...I told myself to hold it together until we were somewhere else. Somewhere softer than an artificially lit room, with artificial plants devoid of images, and filled with the scent of rubbing alcohol. I think I was able to wipe the teardrops without being seen. The Barren sent me a text message shortly after that promised I could cry it all away that night when he got home. That idea gave me some extra bravery and I sat a little taller.
Two hours later I was back in my car, and driving to the hardware store to pick up some plants to put into the soil on my patio before the wave of fatigue hit. I went home, ate some rice and tofu and sat in silence. Then around 5pm, The Barren called and said he could not make any more choices for the day and so I called in an order to the local Vietnamese restaurant and The Barren picked it up on the way home. He then told me about how horrible his day was and I listened and told him I was sorry he had a rough day, ideally things will be less stressful now that he was home. My arm was itching and aching from the day before and I think I hid that from him too.
I ended up falling asleep on the couch while he watched something on YouTube and then crawled into bed, asking him before falling back to sleep if he thought I was strong.
He said: you are a warrior, you have had to fight for so much.
This made me sadder than I thought it would.
Infertility has taught me a lot about grief, and sadness appearing in new and unexpected places. It has taught me how to speak up in medical spaces and ask questions, but also fortify myself for the answers as they are often ones you don't want. It has marked me in ways seen and unseen.
The new infusion nurse told me that I had such a calm serene energy about me. I thanked her and realized that my outward self was on display and that my inner dialog of tears, duct tape and sadness was hidden from sight, thankfully.
Friday, January 19, 2024
Fatigue and the new year
Friday, October 13, 2023
Fear and sadness
***trigger warning-FEAR HATE****
Stream of consciousness writing
I am trying really hard to keep my shit together. I feel like it is harder than normal.
I am shocked and terrified, these are the closest words to wrap around the unthinkable... by what has happened in Israel...and the response that will continue to punish the innocent people of Palestine.
I ingested too much news, a thing I haven't done since the election.
I can't read accounts, I am dizzy and sick to my stomach and scared...I haven't been scared in a long time about being Jewish. The anti-Semitic chants, and behavior and actions and silence in the face of it all is a lot to try and process.
I used to have nightmares on the regular as a teenager of SS soldiers busting down my bedroom door while I slept, while I hid, while I shook...I'd awake in a sweat and was too afraid to share what haunted me. Maybe it was generational trauma...but it changed me.
I have that same fear today, I read something about a day of death to all Jews tomorrow. I told The Barren that I am frightened and that our door is marked so we are extra easy to find. I sound insane, but it is a real fear...
I have my first real artist talk in a major city Saturday, and I am trying to prepare for it, but I am frightened...I want to be professional and brush aside fear, so I am writing here in hopes to unload some thoughts and clear my mind to think more clearly.
I feel lost, and confused and scared and unsettled.
I went through my jewelry this morning and found my childhood star of David, I used to wear it a lot when I was younger until I got comments and questions about my Jewishness. I am far from a practicing Jew, but have always been proud and aware of my Jewishness and how complex that was.
Today while making a medical appointment, the person asked where I was from to have such an unusual name...I said Eastern Europe. It hit hard.
Today I am simply a human, a person trying to make sense of the upcoming senseless killing, the senseless hate, the senseless pain for so many people.
I have woken up multiple times this week and looked at the outside of my building fearing there would be hate graffiti on it...it makes me feel insane...it is like all my hairs are on end...
Wednesday, September 13, 2023
Published
Many years ago I had some work in an art of infertility exhibition, it was far from me so I sent my work and got to see photos of it on display with other artists work about the same theme.
A couple of years ago I was approached by a research group about my art project and my experience with infertility. I answered some research questions and thought that was that.
Then last year I was approached by that same group and asked if I could share some art and a statement from my show.
I did that as well, seems that their research, PHD paper was going to be published and created into a book and would I like to be part of that.
Thinking about my mark in the world I was cautious but open to the idea and wanted to hear more. Then about 8 months ago, I got paperwork from a university publisher, it had some bad wording in it, and I told the project I needed to decline on the opportunity. Turns out standing up for my self and my work had a positive effect, as other people in the project objected too and so the contract was rewritten and there was a green light.
Well, here I am sharing with you that the book has come to reality and has been made and is releasing later this month! All the artists/contributors involved retained their copyright and were "paid" in a single copy of the publication.
The book is a beautiful collection of stories of infertility from a myriad of perspectives and it is heartbreaking and beautiful, and my artwork and words are collected in it.
It is quite surreal, and a deep wonderful thing from so much loss.
There will be publicity events all across the US, and I have agreed to be available if there is something that sits okay with me.
You can read more about the book: HERE
Book name: Infertilities: a curation
Wednesday, August 16, 2023
Memory of loss, and a little growth
**trigger warning: miscarriage**
Today marks the anniversary of my final miscarriage.
I wrote about it HERE when it was happening.
I was alone, and one of my old-man cats sat on me or sat with me the whole time. It was unlike him, and now I am thankful he sensed that I was very alone, and losing my final attempt of motherhood. He is woven into the memory of the days.
Since then, when this day arrives I remember that final loss as the end of the pavement. A path I was familiar with that was now suddenly, unpaved and new and unknown. I took a self portrait that day, strangely I had a slight smirk. Maybe it was reflex to smile, and then at the same moment, I realized it was not happy or sad...but just was. That is the lingering feeling now.
It just was
I think of my star child often; sometimes they come to me in visions or dreams....other times I suddenly feel like I have forgotten to pick someone up or that the person I want to turn to has walked away, and I am left standing alone, staring into the ether.
They never got big enough to ever know completely.
Now several years later, it is a day like others, except there are pauses along the way that I take to reflect and send love out. Much like days of loss for my grandparents and friends and companions that have left this plane of existence.
I think that is growth...I have learned how to carry the sorrow in a manageable way. Does that mean I have forgotten it or moved on....not really. The Barren has been pointing out and gazing at small humans much more often these days and I think that has been a revisited heartbreak for me and him. We are emotional and empathic people, so this is natural for us...but with a bitter twist of our own loss folded in.
So I send extra gentle hugs out to you all, as you remember your losses after reading this.
We are the broken but not lost
Thursday, August 10, 2023
Bread was my life
I was reading posts this last week, well I read them on almost a daily basis and read this one by Mel of Stirrup Queens during her weekly Roundup, and it seemed to trigger me.
Wednesday, July 26, 2023
Gigglemug
*Gigglemug
“An habitually smiling face.”
Tuesday, May 30, 2023
ALOT- yep I meant it like that
TW **pregnancy talk towards the end**
I have begun taking HRT (hormone replacement therapy), to me this is another milestone in life...
I went to a second doctor to get a second opinion about an ultrasound result and was given the all clear for treatment. It was a 1 hour wait to see him, also my first male GYN doctor. He came into the room with a resident in tow also a man, and sat down, apologized for the wait and asked why I had come in. I said, get ready for an earful, and then I recounted the history with my uterus & ovaries, why I get yearly pelvic ultrasounds, recent tests and results and my concern about the most recent ultrasound results*. Once I was done, he asked if I was in gynecology, as my descriptions and knowledge was similar to his...I said, well I've had to be my own advocate for a long time and this is the result. He said he only had one question, and it was a simple yes or no. My assumption about the current situation was true and he agreed with the prior midwife and the result was that I did not need the procedure the ultrasound tech suggested.
After that was cleared up, I asked if he could recommend a menopause care doctor in town, to which he explained that we could take care of it there....I could get onto HRT, as my breast lump is benign, and I am early into menopause. I told him I had been reading about all the benefits of starting early into menopause and that I was tired of feeling like a zombie. I wasn't sleeping, I was having a hard time focusing, I was more and more concerned about my overall health, my libido had dropped, and although my hot flashes are mild, my night sweats for the last 10 years were getting REALLY old.
He reassured me of the benefits, and after suggesting that I start a patch. I told him that although that was a great option, I have an allergy to adhesives and so we needed to find another mechanism for delivery. I asked my questions and voiced concerns about my endo, and fibroids and cysts; which he answered and then I left with a prescription and knowledge in what I was choosing.
I sat in the car and felt..........SEEN, HEARD, and scared but EXCITED. A new milestone.
When I picked up the drugs from the pharmacy, I asked the pharmacist what to expect and was given another pep talk and left feeling good about my choices.
My bestie and I have had conversations about HRT and when she went into the doc to have her IUD removed and to ask about HRT the doctor was far from helpful, instead delivered the phrase " it is just something we need to deal with" She is now on the hunt for a doctor that specializes in menopausal care too.
This is not something we should have to "deal with" she is miserable, I am feeling less miserable (even after a week, even if it is psychosomatic at this point) and we deserve better care.
All this after a span of two months of constant stress trying to make something for the newest exhibition that the gallery invited me for. After too many sleepless nights, failed attempts and tears I turned in four options, that I had created with the theme, knowing that I had literally tried everything I could to make the art. Thankfully, and with a kind nod from the universe, I was invited to submit a selected work. So I am in the exhibition. It is a fundraiser, but 50% of the sale goes to me, and the rest is split between the gallery and the garden. I am quite proud that all the work manifested into a positive reality.
I have been "resting" my creative self since the submission. I had tea with some longtime friends who are painters and preparing for their solo exhibitions. I told them that I was flattened creatively from what seems like a constant sprint. They told me about the post exhibition breakdown, I was still running on my treadmill in an effort to make something else, capture that spark...grab for the stars...be everything and everyone!
It was reassuring to hear it is real and needed. We are all feeling and looking haggard, wanting to make beautiful, meaningful work while still being everything to everyone and trying to take care of ourselves too...it is alot, a big furry, alot, just there waiting to see what we step in next.
Does the world seem to be spinning strangely? Is time whipping by like a top?
It is graduation time again, maybe that is why the alot appeared, time markers, reminders of how old my star child is...
Why are all of my yoga classes filled with visibly pregnant women, so so many of them and so many more that are newly pregnant women talking about how newly pregnant they are...
I thought all the dudes got vasectomies' when Roe was overturned...I guess not.
I guess it is another alot.
*my ultrasound result said that I should get an endometrial biopsy, as my endometrium is too thick for a woman my age. I got two opinions from two doctors who looked at my past ultrasound results and agreed it was not needed. Plus, with my closed cervix, I would require a D&C just to access my uterus...



