I am wondering which way is up?

my garden is producing so many cucumbers

I have earmarked this week as a week that I stay put and try and make something! I miss making my work; thinking and trying to make the colors work or the concept appear as I feel it. it has been bumpy so far, focused time yesterday maxed-out at about 20 minutes, before calls, and emails and my brain just collapsed.

As of late, my life has been my parents...all engrossing, notes on the phone and scraps of paper. I drive into town at least once a week to deliver a couple prepared meals and make sure appointments are known and addresses are marked down. Remind them of what is required of them and how they should react to particular situations. I attend all the doctors appointments now, with exceptions for mental health care appointments and now my fathers in-home physical therapy.

I am the decoder ring. My parents don't absorb information and so I attend and answer questions that bubble up after we leave. Sometimes it was who did we just see and why?

My father finally was finally diagnosed with NPH , which in short, is extra fluid on the brain that doesn't resolve and leaves his brain compressed from the internal pressure. We saw a brain surgeon and she mentioned that he indeed has it and it appears it has been in place since his fall in 2024. She said that a valve could be placed in his brain to drain the excess fluid. She described the process and when she was done, my father said " you aren't gonna drill a hole into my skull!"  She said that he didn't have to have the surgery, but call her if he changes his mind. This is not a fatal disease, just a functional one. I suspect it was there before his fall but ignored or downplayed by his neurologist. It doesn't matter now how long he has had it, we are all going to have to live with it because he refuses to have surgery for it. Frankly, I am not sure he would be the best candidate for the brain surgery anyways...he would be required to do a lot of PT afterwards to recover from it and I don't think he would commit to it. So he will continue to be confuses, unsteady and experience funtional issues.

I made a promise to myself recently (in the last three weeks) that I would like to try and have a relationship with my parents and not spend my time fighting, bargaining and being run over. 

A friend of a friend mentioned this option with their children being picky eaters...they said, I could spend my time with then yelling and making them miserable or I could let it go and have a relationship with them. Most things work themselves out...I took this idea to heart when I was having a panic attack thinking of all the things I was trying to get them to do for their own good and falling flat and being run over, and snapped at. 

So now my voices' cadence is cheery, I don't debate, I don't engage with the bait to fight about something. I simply say "okay" and put down the conflict that is building.

My mother( the better of the two)  has become resistant and more forgetful, but it is hard to know if it is from her lack of sleep or lack of attention to what is being said to her. She seems to retain less and less and is procrastinating more and more. She cries on almost every phone call we have and says she needs help and then when it is offered, she snaps and says that we have overstepped and she doesn't want it. This usually means that she will reflect about it and a week or more later say she needs that help again and we will try again....except I think this time my mom might have burnt a bridge with my brother. Only time will tell....

So while all this swirls in my brain, I am trying to put it down and think about my studio practice. The Barren took the week off work and said he wanted to support me in my focused time: he said he would make me lunch and do laundry etc...so I would be less distracted with responsibilities; but has so far, he has not been home for most of the day. He leaves to play music with his friend late morning and comes back around 8pm, as this was his usual "music camp" week* (a week he takes off annually to attend music workshops etc...with his bandmate) I am glad he is relaxing and taking time to feed his creative vein. 

All this time alone is like still air, I am left to also make food and clean up and reflect on how far away I am from creating something. 

My heart is broken...I feel so afloat. I am used up in so many ways...

I try and find things that would lead me back to the path of thinking about my work: doing yoga early in the morning to kick start my brain, watering my garden to clear my head. Clearing clutter in the workspace....making food and writing down what might pop into my head...but I am having a really hard time not feeling so very dark. I am exhausted and often feel like I am dragging my body around from place to place. I want to sleep for days, but I can't justify it in my mind, I would waste all those hours of potential creative making. I am at a loss....and when things get that quiet, my parents creep back into my thoughts. Long lists of things I should do, need to do, need to call....it is everywhere.

I had a nightmare the other night that I was standing in traffic at a very busy intersection, and when I saw a muscle car speeding towards me I couldn't move. I froze in place. I felt the car wiz past me, I felt the air vibrated past me and I got knocked by the side mirror...but it also felt like it had hit me and I traveled through the car, feet cemented into place. I stood there and wondered if I was still alive. That is when I decided it was time to wake up and get the day to begin. 

There and back again

 "Sorry for the delay, I have been overwhelmed with caregiving tasks"

This is what I wrote in response to a text from my mother in law. I feel this way a lot now. I am overtaxed, overwhelmed, over run with emotions and haggard.

April marked my 56th birthday.
I spent the month peppering treats for myself in between doctors’ appointments, work responsibilities, managing my immune system and everyday tasks.  I knew The Barren was overworked and wouldn't have the brain capacity to plan anything. I got my bi-annual haircut, a new to me dress, a new vibrator, a new to me vintage point and shoot camera and some plants for my garden. I got The Barren a fancy new showerhead (I give gifts for my birthday) made my brother a couple quiches and treated a friend to an ice cream.
When the actual date rolled around, The Barren and I celebrated my birthday together, which I loved. He had no ideas, because all he can think about is work and so I sat for a moment and thought of trees...and told him I wanted to go forest bathing. It is a bit complex orchestrating it out, as one of the cats had just been put on daily meds, my diet makes traveling a whole thing and our cat sitter was at Stagecoach, and our backup sitter was moving that same weekend for fumigation...BUT we were able to spend two nights away!!
I had spent the week before making birthday cakes, cupcakes and sweets...every cake I made had a shelf life of four hours before becoming dry or dense or chewy?! I make my birthday cake every year since my diet had so many restrictions added...this year was no different. In staying with tradition, we took cupcakes to my parents the night before so I could be with the people who made me. This year was... it was surreal. We arrived, my parents handed me bills (my brother and I handle their payments now) and asked questions about medical appointments and then they walked to the table, sang happy birthday, took a photo and we ate the cupcakes in silence. Packed up the tray and we were back in our car an hour later. It felt very different...disconnected and not really celebratory.
I made note of that in my mind, and it broke my heart a bit more.
The next day was my actual birthday, my other ritual is to take a sunrise yoga class to start the day. I did and much to my surprise, my yoga teacher had placed a sweet gift at the top of my mat while I was sitting with eyes closed before class. When I opened my eyes and discovered it I spent the rest of the class hiding my tears. I was SO overwhelmed by the gesture I just let the tears fall. I was in a dark class so it was easy to hide. I kept thinking of a meditation that was what does kindness look like to you?
I drove home and we spent the day driving to the city outside the National Park. I took photos along the way. Part of this first adventure was that we had recently traded in our older BMW for a used electric car, so this was the maiden road-trip voyage and it required a new learning curve. It is not a tesla so chargers are different and less obvious.
As we drove further away, I was getting texts and calls with birthday wishes and songs. It delighted me. We found a place to get some food that I could make work and we ate in the hotel room in our PJs watching television. When 8:30 pm came around, I called to check in on the parents...they had gone to bed...and when I said we had arrived at the hotel and that I had gotten the loveliest calls all day...it was then that my mother said. What is the date, did we forget to call you?
My parents had forgotten to call me.
The following day was a new page and we drove to the trees...MUCH to our surprise it had SNOWED overnight making the park right out of a fairytale! 
I live on the west coast, so this is beyond magic and I was laughing and crying and making strange primal noises when I couldn't form words.
I was in such a deep state of glee I was crying the whole time, everything was SO beautiful and quiet and calm and perfect. I kept turning to The Barren and saying “this is the BEST birthday ever!"
We walked a little in the snow, and saw deer and squirrels and I took lots of photographs. I smelled tree bark, and listened to the crunch/squeaking sound of snow beneath my tennis shoes, got hit in the head with a snowball that fell from a tree and filled my eyes and heart with the forest and gratitude.
As we drove to the next charging station we made promises to each other to return again soon and as often as we could. It was the balm that soothed both our hearts and brains. It was like we had traveled through a portal to another world, because as soon as we left the park, reality returned and our hearts were heavy again. Responsibilities were waiting on voicemails and we drove home quietly trying to ignore them for as long as possible.

Who is that?

Recently when I look into the mirror I do not often recognize the person reflecting back at me.

Not in an actual I don’t know who I am kinda way, but an unfamiliar way. I feel disconnected from myself in many ways, and like I am no longer who I thought I was kinda way.

When you imagine yourself, you get a mental image of yourself...and when I catch a glimpse of myself in a reflective surface I am often surprised who is looking back. 

The Barren and I attended a cousins wedding on New Year’s Eve, it was lovely and romantic and the first time in a LOOOOOOONG time that we have had plans on new year’s. The newlyweds are soo deeply in love and it was a beautiful thing to witness. At one point I said to myself, this is happiness, this is joy that you are feeling...it felt so different I had to assess it in myself.

My parents and brother didn't go; my parents because they said it was too much fuss, and my brother because it was a kid free event and he didn't want to leave his home alone on new year’s eve. So the Barren and I dressed up and went and every person I saw asked about my parents and why they were not there. It was hard. I was trying to treat the night as my vacation, my get away for 24hrs. I told that to The Barren and he then understood that I haven’t had the chance to getaway...from anything! So as he watched person after person ask about my parents he saw me. We took photos of ourselves dressed up and smiling, the rain that night made for a chilly covered outdoor wedding and the music was insanely loud, so loud I had a sore throat from screaming all night to talk to anyone. As we left, before midnight, we relished in the quiet of the car and the sound of rain on the windscreen.

It is a strange time we are living in, and being here in the states makes it even more surreal by each hour. I am heartbroken and exhausted and constantly worried about something or another. I am trying to practice radical acts of joy and find things in the day that I can celebrate. I feel lonely and sad a lot more of the time, and despite my activities, I am often solo as the weeks pass. Sometimes I like the time of solitude and quiet, often times it weighs heavy on me and I feel invisible until I am pulled from beneath my cloak...

Example: I was followed in the market yesterday by a man that wanted to tell me how he liked my hair, and admired that I was "letting it go"...he had followed me through to store to tell me this and I am sure if I had said anything other than "um, thanks" he would have continued to engage in some other unpredictable way. I was left looking for ways to be in a more people dense area, making sure I wasn't alone, feeling angry that this creepy guy "approved" of the way I was presenting myself. I texted The Barren and told him I felt super icky from the encounter... and I was really angry. This was only a few days after a man murdered a woman in her own car, and the nation saw. Men are unpredictable and scary.

I am on edge, we all are.

For me, this week had beat me up pretty impressively.

I am involved with my parents and their medical appointments. Once again, I waited to be invited and asked to assist, permission is an important part of trust.

Last week was a lumbar puncture and then this week a meeting about the results with a new neurologist for my father. He had become more confused as of late and the MRI showed fluid on his brain, so that was drawn and the new doctor met with us on Tuesday. He was late, and apologized about that...my father was clearly freaked out because he didn't act out about the wait (they were late for his lumbar puncture too and he was repeatedly slamming his walking stick on the ground in a Gandalf "you shall not pass" kinda way. I had to talk to him like a toddler in the common waiting area explaining how it was disrespectful and how there were others ahead of him), but was quiet on the exam table. My mother was quiet too but angry (about her whole world being turned inside out) next to me...fear presents itself differently in us all. 

The doctor took his time and explained the reason for the lumbar draw, the results of the MRI and what he saw on the spinal fluid draw...and then ordered a blood test (a new one, for Alzheimer’s markers) we talked about gait changes in my father’s walking and concerns about his developing confusion and the talk was a mix of science terms and clear phrases which I followed along with but my parents were clearly overwhelmed by, so I am glad I was there to be the "decoder ring" for them. Afterwards my mother kept saying "you were really good" in that I understood and asked questions as they arose with the doctor. Neither ot them do that.

I was masking well, really well...because what they didn’t know was that I was battling some serious abdominal pain from what I thought was a flare..I had taken liquid antacids down the street from their home...and I was horribly uncomfortable. I had awoken with the pains and soldiered on to make work that morning in town before picking them up and shuttling them to and from the appointment. After the appointment I left their home and was ready to release the emotions of the day when I passed my sister in law on her walk around the neighborhood, I buttoned it up and spent the next hour chatting with her before heading back towards home an hour away.

I didn't get to cry, I was too tired.

I was greeted by The Barren, who had a bad day and I told him, I was just gonna have a thin miso soup for dinner and proceeded to make my dinner. After sipping the soup, I collapsed on his lap on the couch and fell asleep.

I am exhausted and emotionally drained, I feel like I am walking around in a cloud. Not really here or there. There has been so much grief in my body for the last two years.

Yesterday afternoon, I told The Barren that as much as I would like to ignore that I have an autoimmune disease, I am getting punched in the face by it over and over demanding attention. I think I am grieving, not just the state of the world, but my body, my family, and my dreams for myself and my life. It is so frustrating to have ideas and desires to do things, but have less than enough energy to do them. To see them so close, but be unable to maintain the stamina to see them through. I am trying to be graceful with myself, but it is becoming harder and harder and I wonder "who is this?"

My own doctors meetings start tomorrow to talk about my latest results. 

Ideally I can have a good cry soon, like a palate cleanser

A friend mentioned this writing prompt and I found it timely

*Keep your chin up buttercup*

Rollercoaster of Love

 

I am still here, still above ground.
This post does ramble...
I am a swirl of thoughts feelings and moods in every hour of the day. 

I am still in a guinea pig level of this new medication...but I am cautiously hopeful that things might be working better. I haven't been in an ER since May and I count that as a win! I have locked down my diet even more, even though having an auto immune disease means that the food doesn't really play a part in the inflammation but can contribute to irritations. So I am experimenting even more on taking things from my diet, or massively limiting them.

It is exhausting and makes having tea with a friend VERY challenging. I am there sipping water while they eat or drink beverages I once enjoyed. They try and not make a big deal about it, but I see their looks, wondering if I eat at all...or if I am hungry or...who knows. 
I am trying to make it a practice of being present in a conversation and present with the person who has asked to share time and I choose to share time with as well.

 Honestly though, at times it is very hard to not show how I really feel about how scared I am. How I constantly fear that I might eat something that could send me into a ball of pain. How they might see how scared I am to eat anything I haven't made myself...how hyper cautious I am about everything, how this has massively changed my relationship with food, my body image, my self-esteem and wellbeing.

I am back to assisting with my parents in person. I was invited back to help. I have maintained all the stuff in the background, but was refused when I offered to help take them to appointments or help by dropping off meals. So I started with shuttling my father to his mental health appointment and was asked to sit in on the session. Another therapist saw how we interact with my father and saw how challenging it is. My father is a performer, and so he is 100% on when he is around people other than family; presenting a different version to the outside world than is true making up facts. The therapist sees it thankfully, which is reassuring.

I also took my father to his annual wellness check and it was ordered that he needed a treadmill test. I took him to that, and I think it was a shock to my father that he wasn't able to last more than 2 minutes on the walking pad before his legs gave out. He will be returning to the test, but via IV dyes and stimulants to test his heart. It has been heartbreaking and beautiful to see this side of my father. Beautiful in seeing how vulnerable he is, it is a rare thing to be able to witness this side of our parents, so I hold it as a precious thing.
Each of these visits leaves me spent: emotionally, and I want to comfort myself, I do what I can to refortify myself. When he was in aftercare after his fall, I would eat a bag of harvest snaps on the drive home, screaming in between when tension was so high. Now, I drive in complete silence, no snacks are okay at this time....

It is a rollercoaster

I am rule follower, but I am determined to find a path that will work for me. 
I had two social meetings this past weekend and both left me so tired. I joke that the person who says yes to these is a different person than who shows up. I know it is super important to be social, and connect with people who are not toxic, so I push myself to go. I enjoyed both events but I was pretty quiet afterwards. I have found myself looking at people and wondering what it is like to walk in their life, eat what they eat, socialize like they do. I have found myself so much more serious and introspective. I used to identify with Tigger and now I am a cross between Piglet and Eeyore. 

Has anyone else been feeling like this? A shift in how you are interacting with the world around you?

The Barren has returned from his trip to Canada and he mentioned that the city he had his business in was light and vibrant and happy. 
I said "was it like to not waking up in a pool of existential dread every day?" and although we laughed at it, it was true.

Soapbox moment to the universe: I love where I live, it really is pretty and the kind beautiful people I interact with...but at the same time I absolutely HATE this government and everyone who is playing along, justifying it, validating it, supporting it and downplaying it.

I have been hunkering down and trying to find a bit of loft in my mind. Sometimes I get so caught up in the downward spiral of thoughts....other times it is like I am rollerskating around big holes in the road. Currently my garden spots are bringing me joy. I have a community spot and a couple guerilla spots around my complex that I have planted and they are all thriving and bright with blooms and food. I am slowly exploring art making practices that are new and interesting. I am practing yoga multiple times a week and getting closer every class to making my goal of 1000 classes done by the end of the year. Today was class 968. There have been some wins and I am celebrating them. 

My life feels like a rollercoaster for sure, but I am still trying to see it through love lenses,
No matter how cheesy that is.

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.

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.

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.

Gigglemug

Talking about process in gallery
 

So the Exhibition opened and I attended the artist reception

(Typically, the reception that the artists attend, so people can ask questions directly of the artists)

The gallery was full, much more full than I was really mentally prepared for.

It felt like I had entered a speed dating event. I was immediately greeted with hellos and questions, and as the night wore on I had explained the process and meaning and motivation for making the work more that 25 times, but really I lost count. At one point I got a real kick out of my father commanding an audience, and doing his best to explain what I made to onlookers; he made stuff up and explained a totally different kind of art, but it made my heart flutter before I stepped in with the actual information.

It was also the first artist reception I attended without a mask, which made it quite easy to see that I had quite the gigglemug*

My work was well received, and before I left I was informed that it had sold.

The Curator was kind enough to share the news in front of my parents and in-laws, so I got a gold star from everyone that evening.

I am very thankful that my parents attended and that my MIL and FIL make a night of it too.

It is a real gift of time and validation.

*Gigglemug

“An habitually smiling face.”

Since the exhibition I have been floating in a sea of "I don't know what to dos"

I have found that tasks around, and in the home, seem to fill my mind; maybe it is my ADHD or my fear of failure or just a true and complete sense of not knowing what to do next. I have built quite an arsenal of tools and taken so many classes on new and different techniques, 

I am paralyzed with choices...

so many choices.

I have taken to my cameras, yet have not formed a project.

I have prepared to the make a couple baby gifts and have left the washed pile of onesies on my work table for weeks. I have gone to a ballet, art exhibitions, live music concerts, adventures to nearby cities, and made phone calls to friends. I have cooked and baked and gardened and cleaned and ironed and done everything all around artmaking thinking it would land me smack in the middle of a new idea...but so far no dice.

I have been taking yoga and meditation classes four to five times a week, I have delivered meals to my parents, and cookies to neighbors, had tea with a friend, watched movies and horrible TV shows...

I have tried so so many things and still I sit here wondering what do I do now!?

I have made all my doctors appointments and the appointments for The Barren, I have gotten myself a new pair of cross trainer shoes for walking in nature, but we have no plans for a trip yet. I have helped organize The Barrens closet yet mine remains like an overstuffed closet of hopes...I did give four of my dresses to a friend, as although they are beautiful they no longer fit me.

I have been the playmate for the three kitties and then find myself lost in a daze holding a fuzzy mouse toy. I am lost in a sea of unknows and quiet.

I don't mind the quiet, but after all this time it is starting to scare me a little.

When visiting with my parents yesterday, I found them older and more fragile, more forgetful, nothing dangerous, but just this side of vulnerable.

My brother is managing our parents rental unit, and I am his backup, but this morning my bestie asked if I would consider managing her moms two properties (as I live closer to them) as her mother was thinking of moving to a senior living situation, as she missed having people around her.

I am gonna talk to The Barren about that, bounce ideas off of him.

I am thankful for choices and options, as I know that comes from my privilege. 

My question is this: how do you chose which way to travel when at a crossroad?

Have you ever been unable to choose because you have so many choices?

Circles

 Circles, they are beautiful and never-ending...

Soap bubbles are shaped in circles (mostly, well when you think of them...now that I think of them, they are a myriad of shapes and this metaphor might not work now...)

Okay, I feel like I have been walking in circles...I have been spending time trying to assist my parents with tasks and plans. Do things for hubby while he works a crazy schedule and do things for my work. I find that there is not a lot of time left for me to sort things out about what I need...plus now we have three cats and the lions share of the responsibilities fall on me now too. 

So when I have time to myself I walk in circles...

Last week was filled with circles- I spent time, money and energy sending artwork and documents to a gallery that was finally having a grand opening and is supposed to be representing (for the last year) me only to not see any of that work shown in the opening reception or online media. I was mortified. That took some time to filter through my mind and just understand some things are not going to work out as you had been lead to believe.

Hubby is away for a week with a friend...he has turned off all access to work and is just "playing" for the next 5 days. I am thrilled for him. Frankly, I think this came at the perfect time, as he is mentally shot and this is just what he needs! I had planned to fill my days with just studio time, not needing to take breaks for meal prep or home tasks.

Then another circle appeared. 

I left the cats for the first time alone for an extended time. It ended up being 7 hours by the time I got home and although I had imagined everything upended, it appears that they slept most of the time.

After volunteering, I picked up some food for the parents and headed to take them for an appointment at the local body piercer. Yep, didn't expect that did ya?! My mother requested for her birthday,  that she get her ears redone, as her holes had closed up and she wants to wear earrings again....so I booked the an appointment. My father wanting not to be left out, had his old piercing done again too. 

The piercer was wonderful and kind and took his time with both of them and I am thrilled to have NO concerns that there will be any complications. He is located in a local tattoo shop and that made my father uncomfortable. While waiting for my mother, my father thanked me repeatedly for not getting any tattoos. He thinks they are horrible...he is very driven by looks, and feels that they look trashy.

 I explained to him how I see them. As humans we decorate ourselves in all sorts of different ways, we collect things, color/cut our hair, pierce our ears, do what makes us happy and hold memories near. I compared tattoos to collecting artwork, if there is a moment you want to remember and hold with you always, why not have it be part of you...collecting images that remind you of that or words that helped your through a hard or joyful time.

I think he understood it differently. His thinking is quite cloudy now, his pain/nerve medicines have made him really have to work to see things clearly and that is often something he doesn't really have energy for. Walking has also become a roulette wheel of if he will loose his balance or not and he refuses to use a cane or sit in a chair when watering the lawn...because of HOW IT LOOKS.

He is currently obsessed with getting a government card that proves he served in the military. I offered to submit the needed documents online to expedite the process so that he didn't have to drive (be driven) up and down the coast to government offices. I gathered all the documents and created all the accounts and today I thought I just needed to put the final pieces into place. After spending hours setting up some other kind of online account to access stuff, the government site says it is not issuing the cards. No reason was given...I researched further and found out that they paused the program last year! it is nowhere on the site. It was a big disappointment and it took multiple days of time, reading documents to and from my father, teaching him which emails are advertisements and which are actual information. He gave his social security number to a person over the phone recently and I just about had an aneurism (my brother thankfully unraveled that mess)  

I felt like I had spun in circles 

I was able to make appointments for them to get a booster shot. It was a whole thing again, as they wanted to know if it was safe and why they needed it. I needed to physically drop off a hard copy of the appointment confirmation because they don't use their phones for apps and don't have a printer for that sort of thing.

There has been a lot of things that interrupt my plans and cause me to run off the rails of focus.

Has anyone else experienced this ruddy transition lately?

It overwhelms me so easily these days...I find it hard to do anything before or after it...as all my thoughts are focused on the task for that day!  It is freaking me out.

I use to be able to do laundry lists of tasks in hours, weekends were full of tasks done and things completed...now I am lucky if I change clothes and do laundry!

So this weekend has started slowly and not as I had planned, but TOMORROW I will do artwork! I am up late in hopes to check off all things that are distracting me and I can wake to a clean slate, prepared paper and a rolled out yoga mat to start the day!

I hope you are all navigating this strange time in the world with grace and a little less apathy.

It is a struggle for sure.

**it took multiple hours to get this post done, as I kept getting called away for kitten crashing sounds, emails, texts and dishes***

Another year-less hair

 

This was that moment when things got …

weird, and downright surreal.

******

We went to The Barren's moms place for a meal for his birthday. We brought lunch and we sat in the backyard, at a table, 6ish feet from each other with our double masks on. 

His mom and her longtime partner have both gotten the first dose of the vaccine, and were a bit more caviler about keeping their masks on the whole time...but thankfully, I am TOTALLY OCD about it and kept mine on which rubbed off on The Barren too and we were safer that way.

I have been giving a gift to his mom for decades on his birthday, a thank you for making the man I love. I call it her birthing day gift. It is usually something small, a token trinket. Mostly just acknowledging her part in the day. She has grown to love it and expect something. (I am totally fine with that!) There are FAR worse things a MIL can expect from her DIL. 

After the meal these two jars were placed on the table, and The Barren was told to pick which ever one he wanted...it was part of his bday gift. My MIL and FIL have begun to grow their own. They were crazy conservative about drugs in the past and this overt, boldness takes a moment or two to adjust to.

They are both engineers by trade and so they are trying to crack the code of dosing edibles and those stories are quite funny. They are trying to make a brownie that is big enough to satisfy their chocolate craving but also not make them so shitfaced that they spend the rest of the day facedown in the couch.

Since cannabis has become legal, it has been a funny transition in our social groups. The parents, who were all hippies, but really pushed hard against their kids using drugs in college are now asking advise about strains and doses. While all us normal stoners, are kind of gobsmacked at their enthusiasm, after receiving so much shit from them for too long.

After the strangeness of the canning jar of pot, the conversation was all about how protected they are now that they have the vaccine. I couldn't help but feel like I was reliving a conversation with a former lover about how he shouldn't have to wear a condom because I was on birth control....maybe it was my own  mindset, but things felt strange and almost funny.

These days things seem off center, tilted and lit strangely.

It feels like I am floating through most days and the repetition of actions is feeling like a movie scene replaying over and over. I wake up, pee and get into yoga clothes, check email for work and personal tasks, then do exercise and then errands, then eat something, try brainstorming, do laundry, do more wall gazing then try and think what to make for dinner and watch tv and clean up dishes, take a bath or shower, maybe have sex and then go to sleep and do it all over again.

What kind of life is it that we are living these days?

Maybe that is why these encounters with backyards and parents is so surreal. Life is downright surreal.

I got my parents appointments to get the vaccine this week, it felt like I had just scored the best concert tickets ever....they were thankful and then my mother said she wanted a different vaccine than what she was scheduled to get. We looked up the data and then I had another half hour call with her explaining how the vaccine works, the effectiveness of this one she is supposed to get and how she might not even have access to the single dose vaccine. It was stressful.

I am stressed out by my parents recently. My shifting role with them and what that looks like. In that daily routine, I would say a good few hours are covered in stress with my parents activities and making sure they are safe and have food in the house and that people are not taking advantage of them. 

(ex: installed solar panels have created leaks in the roof, and the solar company offered them a flat fee to fix it, instead of fix it for them!)

*Sigh*

I am tired, and melancholy and am trying to see a light at the end of this all...

but it is hard.

I daydream of running away, and into the big memories of travels and sunlit days of the past. Laughing more and feeling alive...my actual dreams are dark and sad and scary and i am often left wondering how long it will take to shift into a new direction? 

anyone else feel this fatigue? This shift/tilt of life?

Blue dress and pearls

 I awoke today ready to wear something different...

I didn't wake up soon enough to wash my hair first so I threw two barrettes in my mop and shimmed on a dress I had bought online in mid 2020 thinking I would wear it to an art gallery or show.

That didn't happen but I made it work as a celebration dress for today...I dug through my jewelry box and found my pearl necklace, I was gifted a pearl necklace when I was 13. I think I have worn it twice...

Today, today was the day.

A blue polka dot dress with a peter pan collar, and my pearls! 

I watched the inauguration from my phone, holding my breath terrified something horrible was going to happen, and then she walked up to be sworn in and I started to cry, happy light tears... like an exhale that I had been holding for far too long.

A woman in power, a woman of color and substance

HOPE

*******

I have been taking self portraits since the beginning of the year, to help document what feels like a slow decline of my mental health. I was gifted a polaroid camera that takes multiple exposures and it fits well into my photography style. 

It is a classic response that artists turn their gaze on themselves first; they are the closest and most eager subject. Self portraits are as old as art itself...

January 15th 2021

© The Barreness.blogspot.com

Photography is what saved me from myself before and I feel that it is still trying to do it again.  I treat my camera is like an enchanted being...a separate living entity that is capable of influencing me. It has convinced me to mostly be braver than I thought I was, stand my ground to capture what scares me, excites me and inspires me...for that I am forever in it's debt.

I have been taking almost daily self portraits since before quarantine, and it feels like a hissing valve is releasing each time I press the shutter. With this new instant camera it feels a little like spirit photography, except I can capture my mood or dual most dominate emotions running in my mind.

The year hasn't changed much since it turned back to January, in many ways it feels like a 2.0 version, same shit, some features amplified, while other are phased out.

I haven't been sleeping well, despite the fact that I am still meditating multiple times a week, taking vitamins, exercising, and eating healthy...but I am haunted in my sleep by the loss of my animal companions, relationships, travel, forgetfulness and desires.

Last week I was so exhausted, I made some lentil soup, The Barren and I ate, I smoked some pot and slipped into the bath (that barely covered my knees, we are still in a drought) and then fell into a sleep. I was in bed for 11 hours, and slept for maybe 9 of them.

I tried to do it again last night, but I was awake most of the night again, either peeing or staring into the darkness of the ceiling and trying to make the constant static in my ears dissipate.

This week, my father is having back surgery for a pinched nerve that has left him hobbled and unable to stand, walk or sit. The surgeon explained that he could only do this "relief surgery" because there are no beds in the hospital and so this was the best he could offer. Ideally this will reduce some pain, and allow my father to stand again. I'm a little scared but I will spend the day waiting with my mother and bear witness to her manic swings in mood.*

*my mother is my fathers EVERYTHING and she doesn't sleep much and refuses to nap so she prone to bouts of manic swings of extreme happiness or sadness based on what she can process.

2020 was TOO REAL

It was too much, too often, too deeply, and too brightly raw

Duck and Cover

Hiding from the world

I work with a sibling, we've worked together for decades...

either at a family business or an outside business run by someone else.

Regardless, we are still siblings and so that dynamic is still very much in play.

Yesterday was a tough one....

we fall on different sides of the spectrum on many issues and we are both strong willed so conversations can get heated but always civil.

Yesterday they arrived and put their soap box down and stepped on about a half an hour after arriving. 

The difference is that I recently have been listening and not commenting back-

firearms was the first topic

then meat

then critiques about how I respond to situations.

When tensions are highest, is when the business is under stress from deadlines 

and family responsibilities outside the office.

Yesterday, I knew was going to be tough because we are understaffed and there are A LOT of orders due...so I usually brush it all off and most things don't stick.

yesterday was an entire 8 hour shift of things being flung at me.

Our parents visited during that time and even commented that the day seemed to be lobbing a lot at me verbally.

I smiled and did not engage still.

When it was time to go, I was TOTALLY spent from holding up my mask of calm.

I got into the car and drove the hour home in silence.

I came home and feed the cat and fell into bed (fully clothed) and burrowed myself under a blanket despite the 80 degree F weather.

I fell into a daze for an hour...mentally housecleaning.

letting things out...letting things go...pulling words and situations off and out of my skin.

I ate a comfort meal of miso and ramen noodles and went to bed.

This morning I was awakened by the cat throwing up 

(most animal companion caretakers can shoot out of bed from a deep sleep to these sounds) 

I decided that today I was going to skip yoga class and simply be kind to me.

My take away was how it made me feel.

I need to tell them that their words hurt me.

That those same words spoken at home would hurt

I adore my sibling...and often we are a great team 

but yesterday was wicked

Today my state (the whole damn state) is on power shutoff notice....

Autumn has arrived.

the poison oak is in bloom and the wind and fire watch is at extreme.

and apparently tempers as well.

If you have gotten this far...

thanks for listening to me

I think you are amazing and kind and good 

Victory

I am not sure if I had anything to do with it....

but The Earl mentioned that my niece and nephew 

will most likely be getting the Gardasil vaccine.

I feel like I've survived through the battle of logic.

I would like to think, that all the information that I passed along to him from 

SOOOOOO many sources was of help.

I don't need credit for it...

Honestly...all that really matters is that

 my dear nieces and nephew are going to be protected.

I can sleep better with that knowledge.

Thank you for your kind words and help....

I knew I could count on you sisters!

xoxox

My plate is full

clearly my essential oils to "magnify my purpose" are working

So I am busy...really crazy busy, 

like so busy I am paralyzed and unable to decide which task to do first kind of busy

.....ever been that way?

I have 10 pieces to frame for upcoming shows that all pretty much need to be done by this weekend.

That is a lot of mat board and math and frame

I can totally do it but for some reason I feel compelled to sit and eat tortilla chips and watch some horrible television instead. What am I doing!!

This last weekend I had some friends over to eat some cake and make me smile...it worked

My father even participated in a music jam session...so the house was filled with sound and laughter.

it was nice...really nice and a great cherry to the weekend before sundae that I was still digesting.

I ate and loved fiddle head fern
as well as everything else that got shoved into my pie-hole

I am currently over committing myself to friends:

I made hand printed coasters for the bride and groom
the back side has three different designs too

I also volunteered, well didn't say no to a bride to be friend, who has asked me to make the cakes for her upcoming wedding (end of the month) and shoot the official photos of the day...yeah,sigh.

and help with all the other stuff that is coming up too....

Last night she sent a HUGE list of things she wants done the day of or the day before...

you know when I would be baking and sweating and freaking out over her wedding cake stuff....

and I want to help but I am a little overwhelmed...in fact so much so I didn't answer her email yet. 

In all fairness it was sent to three people besides me...who all are helping too.

I think that is my latest response to being overwhelmed: waiting...pausing.

In reflection that is probably a really good thing, because if I say something RIGHT away I would most likely add more to my already full plate of commitments and then really feel like taking to a cave and hiding.

I will answer her...I just need to slowly read it all again and figure it out.

I know I am gonna get it all done, and the pressure will be something that I don't like but I can do it and it will be completed and good events will follow suit...but until then....I can vent here and in the tub at night.

I have also been reflecting on being child free...someone asked me at the gym the other day if I had kids.

I simply said nope

She was kind of unsure what to say so she said "well kids aren't for everyone"

I just smiled

I use to answer, no, I have cats....but I was finding that it was a cop-out...like: no, but the cats are just as good. So this was the first time I got to say what I really felt.

I was OK with it, no need to overshare, or be snarky or drop an emo bomb...

It felt comfortable and right.

I watch my SIL juggle a little one and two others and see her still trying to be herself and a wife.

I am thankful for that...both all she is doing and that I am not juggling all that too!

That is a huge step I think for myself...I am really finding comfort again in my self.

On a side note:

This is what I got from my mom and pop on my birthday...

yep, baked goodies and a fresh skull from an owl pellet

I love that the randomness in my life is coming back!