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, along with EVERYONE I know are waiting. Our stomachs are filled with acid, our nerves are burned, we are all exhausted, there is so much anxiety you can feel it in the air. 

My bestie and I exchanged texts this morning recounting what we are doing to pass time and not look at the news or think or hope. 

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

Stagnation

 

This is how I spend my hours in the infusion chair. I take selfies and snooze.

I am currently trying to make some art....my end of year submission is due at the end of the month and I am finding myself struggling to focus, be inspired and motivated into making something interesting.

I have given myself grace, space and time...and yet I am feeling like I am trying to pull from an empty vessel. I am exercising, watching what I eat, trying to get solid sleep, reading things that are interesting and yet I am still coping with what seems like artistic blocks.

I am struggling with negative self talk, I have set firm boundaries for time to sit and try and work...and here I am, writing and not making some kind of artwork. 

I have recently come to terms with:

 the reality of being someone with multiple hidden chronic diseases

My relationship with my parents has broken in a new way, and despite my kindest, most tender efforts my father mentioned this in therapy yesterday: "he and his wife have been "parented" by their grown children since his head injury and... they are in the middle of a falling out with their daughter"

I remember in my grief therapy many years ago, one of the things I tried to resolve was not being heard. Some of my earliest memories were feelings of always being dismissed and told I was being overly emotional or silly. I must need a nap or need to sit and think about what it is I wanted...I was often angry and crying from frustration. I learned that what it actually it was because no one heard me or listened to me. So I would scream and slam doors, and then get in trouble.

This feels a lot like that.

I told The Barren the other day, that I realize this is my role with my parents now. I don't have to like it, but I also know that my parents don't want to be accountable for themselves or choices. So if something needs to be done, and I mention that it might be a good idea to think about it, their response is: 

"well, I guess I'll do it because if I don't I'll be in "trouble" with her, so fine I'll make that appointment or not climb that ladder to sweep the roof"

My brother does not get this response.

It hurts and I mostly want to cry, but it won't change anything. My father will not remember the conversation a couple days later and my mother clearly won't either. So now, I just use a flat voice with conversations on the phone and simply deliver information about doctors appointments for my father, or make Mmm Hmm sounds, stating no words of agreement or disagreement when my mother decides or remembers to call me. At the end of each random call, I ask if there is anything I can assist with and am always told no. So I leave it there.

I am getting my infusions every 8 weeks now, and they are taking 3 hours. I have to stay afterwards because my blood pressure drops and makes the infusion nurse anxious. So I sit and wiggle my feet for a few moments afterwards and my blood pressure goes up enough to be dismissed. While sitting there, I snooze, take selfies, look at social media and text The Barren updates on how thigs are going. It is horribly boring but early bloodwork results show that it might be working.

I have been doing my yoga practice four days a week and meditation one day a week. All of my classes are heated, and half of them are weighted. I have upped my protein levels in my diet as I read that it is recommended for Crohns and Colitis disease. It has become quite a full time job and I am doing all I can to not slip into disordered eating patterns.

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update

I finally made some artwork and submitted it Friday. I will know in the next couple weeks if something caught the curators eye enough to invite me to exhibit again this year. I was able to turn work in ahead of the deadline and have spent the last couple of days relaxing my brain and revisiting the idea of a more organic method of artmaking....instead of chasing a deadline.

I am proud of myself for giving everything I had to give to the project and turn in four brand new works for consideration.

Many anniversaries are in this week...

The 30th is the anniversary of my dear animal companion: 2020

One of my miscarriage's is the 30th as well

and then our Wedding Anniversary, 22years married, 32 years together

We are both so rattled, I have a feeling it will end up being a meal and a sunset drive. 

The Barren mentioned last night that he is really grabbing at straws for ideas...and I know what that feels like. We have been massively distracted with everything else life is throwing into our faces. We have had to make plans to travel for a family trip at the end of next month, to visit dying family. It will be like family gatherings of the past where we drive for the entire day just to get half way to where we need to be.....and those arrangements have taken all our mental energy. We are both quite anxious about it and the election is weighing so heavy in out minds and hearts...we are having a hard time focusing on anything other than just functioning. So our wedding anniversary has taken the back seat again...honestly, just spending time away from his office is gift enough for me.

I am feeling a lot

thinking a lot

and trying to stay upbeat for his sake

really we are just treading water.

Smiles and kisses above the water and absolute chaos below the surface.

                                     

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.

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

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.

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.