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.

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.

Fatigue and the new year

Stream of conscience writing-and reflecting

I am here, still here.

Thankfully less frightened than my last post.

******below written at the end of last year******

I gave my artist talk and three people came; well three besides my DH and the social media person that was recording it for the guild.

There were marches all over the city that day, so it was a tough day to get around. The three who came were a guy I went to high school with and his daughter and a friend who were interested in art. It was a nice audience and made for an intimate experience for his daughter to learn about the art making practice.

I had too much chocolate and carbonated water, but it is better to be over prepared than under.

My hubby recorded the talk, as it was requested.

So far 10 people have watched it, and two told me they had a hard time hearing what I was saying.

So it was a learning lesson and an act of presence. 

I did enjoy the act, but the build up was A LOT.

Afterwards we went to a middle eastern restaurant,  and quickly realized we were a minority, as the place filled with protesters and we were watched quite closely the whole time. I think I asked hubby a couple times if food was on my face as I was getting so many stares.

It was tough, and heartbreaking and only a few days after the kidnapping and so my Jewishness was obvious to many.

I returned home to focus on my next task, make new work for my annual submission  for the next big event. No pressure, no stress....no terror.

Hubby got a cold, and I had had my infusion coming up so I slept on the couch for a couple nights so I would not get breathed on all night. I added it to my internal dialogue of "suffering artist" narrative in my mind and after several months of struggling, and working and crying and wanting to burn the whole place down...I created some new work.

It was the most challenging experience to date.

I submitted work a day before the deadline and walked away knowing that I had tried everything in my power and wheelhouse to create something new, unique and that I loved.

The Barren planned an anniversary getaway for us...and it was 10000000% needed and a complete surprise. We celebrated 21 years married and 31 together this year. We went to the desert and a very nice hotel...there was a soaking tub on our private patio where we took turns soaking by a fire, we got a massage and had a fancy dinner out. Mostly we got quiet, a reprieve from our own thoughts and reality.

*****

After the return from the desert, I was faced with another wall of stress...

which had me dealing with the logistics of switching pharmacies that 

 supply my infusion medicine. I spent a month trying to get one office to submit a signed document. The delay was so prolonged, it delayed my medicine for an additional 10 days, which doesn't sound like a lot until you factor in that I get this medicine monthly. I ended up going to the office personally, twice with a copy of the document, the line highlighted in hopes to get it resolved. The second trip was the keystone, and I broke down into a waterfall of tears when I had the signed/faxed document in my hands. 10 days after my medicine was due, I got a needle in my arm.

I was so absolutely spent from the process, I had broken down multiple times with people on the phone. I lost my shit, I apologized for it and then grabbed my bootstraps and took care of business.

I sat in disbelief for a couple days afterwards, not really saying anything and just staring into space.

The new year opened with a rescheduled MRI after The Barren had taken the day off to support me, and showing up at 7am to have it. Someone changed he date and location and neglected to inform me. I showed the front desk person the confirmation, but told them I understood that didn't change anything, so please just tell me where and when I am supposed to show up fasted and ready to drink insane amounts of contrast fluid. I go Tuesday now...3 weeks later.

The December art show was well attended and my work sold in the first two hours of the opening. Another of the works I had submitted for the show was selected for a separate exhibition which is open now. That was a lovely happy response to all the stress and sorrow of the prior month.

Now I am in a holding pattern again, trying to refill my energy reserves and start making work again. In the meantime, life has laughed at me over and over, delivering tasty tidbits of stress and worry. 

I start to wonder, is this what my 50's will be,? 

I know the world is an absolutely chaotic place and there is so much horrible outside my door; it sometimes feels like I am being a glutton for punishment when I wake up everyday...greeting the day and thinking of all the best for the time ahead....and even if I am beaten down over and over again, I still greet the next day with hope for something better. Does this qualify as insanity?

A woman I have meditated with for these past pandemic years just found out that she has breast cancer...and when she told me, I was numb. This woman is a peer, she adopted her kids, she is an artist and she had an ultrasound because she was told she had dense breasts and they found over half her breast had cancer growths in it. I was flattened by the similarities.

 I told her that I have been on infusion therapy for the last year and when I started I didn't want to be seen as a sick person. So, in an effort to not say "you are in my thoughts" I told her that I will focus on her making all the best choices for herself, and being given many options and strength to do what aligns best for her goals. I rethought about that encounter many times over, and feared that I had diminished her experience. 

I am finding myself at a loss for many of life's most difficult moments.

What is wrong with me?