Thursday, January 25, 2024

Grief

 I have found that my recent doctors visits are causing a wake. I am spun for a couple days after the visit or test. It seems to be more obvious to me now. Maybe it was always like that, but I wasn't as tuned into myself before...but it is like a neon sign to me now.

I can mask fairly well during the visit, but afterwards, it is like a crash. I want to cry and hide and be taken care of. None of which are realistic anymore.

Having to receive monthly infusions now has challenged my sense of self and belief in my strength.

Am I really a strong woman or have I just made myself into a character in my mind? A woman that can handle anything thrown at her. A woman that can balance all the dishes and dance steps. A woman that can smile no matter what is being said about her. A woman that can walk into any room with confidence and poise and carry on a conversation with anyone there regardless of the topic.

Now I feel like a shell, I feel broken and covered in duct tape to hold it together and no one seems to notice because I have enchanted them for so long, they can't see me any other way.

When I saw my doctor last I broke down on the exam table telling her I was overwhelmed and she told me to be thankful of all I have. It felt like a slap in the face.

When I started getting my infusions over a year ago, and all the tests prior to that, I had drawn a line in the sand, that I don't want needles in my hands. I had a horrible experience many years ago from an ER hospital visit where I got a series of small hard lumps in my left arm that took months to resolve. I was in so much pain from them that I told The Barren that I NEVER want an IV in my hand ever again. My line was upheld with one exception, my endo surgery back in 2012.

Yesterday I had to cross it again at my infusion with a new nurse.*

Tuesday (the day before) I went for an MR enterography. For mine, you have to drink two and half bottles of thick fluid that lights up your gut, and then they give you medicine to slow your gut down, and then inject you with contrast, and take a bunch of photos face down in a MRI machine. The nurse tried multiple times to get a line started in my arm, before declaring it done, all the while my left arm, was left sore, swollen, bruised and an unviable option for my infusion the next day. 

*Hence the need to seek new veins.

When the infusion nurse said she'd be gentle and not leave a mark, I had to fold...I had to get my long fought for medicine. My self advocacy tank was empty, what choice did I have?

I quickly set into play a weighing of the options in my mind and thought, 

Ideally this decision will not land me in the ER again. 

A phrase I use far more often these days.

After she placed the IV she stepped away to attend to other matters and I shed a couple tears...I told myself to hold it together until we were somewhere else. Somewhere softer than an artificially lit room, with artificial plants devoid of images, and filled with the scent of rubbing alcohol. I think I was able to wipe the teardrops without being seen. The Barren sent me a text message shortly after that promised I could cry it all away that night when he got home. That idea gave me some extra bravery and I sat a little taller.

Two hours later I was back in my car, and driving to the hardware store to pick up some plants to put into the soil on my patio before the wave of fatigue hit. I went home, ate some rice and tofu and sat in silence. Then around 5pm, The Barren called and said he could not make any more choices for the day and so I called in an order to the local Vietnamese restaurant and The Barren picked it up on the way home. He then told me about how horrible his day was and I listened and told him I was sorry he had a rough day, ideally things will be less stressful now that he was home. My arm was itching and aching from the day before and I think I hid that from him too.

I ended up falling asleep on the couch while he watched something on YouTube and then crawled into bed, asking him before falling back to sleep if he thought I was strong.

He said: you are a warrior, you have had to fight for so much.

This made me sadder than I thought it would. 

Infertility has taught me a lot about grief, and sadness appearing in new and unexpected places. It has taught me how to speak up in medical spaces and ask questions, but also fortify myself for the answers as they are often ones you don't want. It has marked me in ways seen and unseen.

The new infusion nurse told me that I had such a calm serene energy about me. I thanked her and realized that my outward self was on display and that my inner dialog of tears, duct tape and sadness was hidden from sight, thankfully.

Friday, January 19, 2024

Fatigue and the new year

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?

Friday, October 13, 2023

Fear and sadness

***trigger warning-FEAR HATE****

Stream of consciousness writing


I am trying really hard to keep my shit together. I feel like it is harder than normal.

I am shocked and terrified, these are the closest words to wrap around the unthinkable... by what has happened in Israel...and the response that will continue to punish the innocent people of Palestine.

I ingested too much news, a thing I haven't done since the election.

I can't read accounts, I am dizzy and sick to my stomach and scared...I haven't been scared in a long time about being Jewish. The anti-Semitic chants, and behavior and actions and silence in the face of it all is a lot to try and process.  

I used to have nightmares on the regular as a teenager of SS soldiers busting down my bedroom door while I slept, while I hid, while I shook...I'd awake in a sweat and was too afraid to share what haunted me. Maybe it was generational trauma...but it changed me. 

I have that same fear today, I read something about a day of death to all Jews tomorrow. I told The Barren that I am frightened and that our door is marked so we are extra easy to find. I sound insane, but it is a real fear...

I have my first real artist talk in a major city Saturday, and I am trying to prepare for it, but I am frightened...I want to be professional and brush aside fear, so I am writing here in hopes to unload some thoughts and clear my mind to think more clearly.

I feel lost, and confused and scared and unsettled.

I went through my jewelry this morning and found my childhood star of David, I used to wear it a lot when I was younger until I got comments and questions about my Jewishness. I am far from a practicing Jew, but have always been proud and aware of my Jewishness and how complex that was.

Today while making a medical appointment, the person asked where I was from to have such an unusual name...I said Eastern Europe. It hit hard.

Today I am simply a human, a person trying to make sense of the upcoming senseless killing, the senseless hate, the senseless pain for so many people.

I have woken up multiple times this week and looked at the outside of my building fearing there would be hate graffiti on it...it makes me feel insane...it is like all my hairs are on end...



Wednesday, September 13, 2023

Published

 



Many years ago I had some work in an art of infertility exhibition, it was far from me so I sent my work and got to see photos of it on display with other artists work about the same theme.

A couple of years ago I was approached by a research group about my art project and my experience with infertility. I answered some research questions and thought that was that. 

Then last year I was approached by that same group and asked if I could share some art and a statement from my show. 

I did that as well, seems that their research, PHD paper was going to be published and created into a book and would I like to be part of that.

Thinking about my mark in the world I was cautious but open to the idea and wanted to hear more. Then about 8 months ago, I got paperwork from a university publisher, it had some bad wording in it, and I told the project I needed to decline on the opportunity. Turns out standing up for my self and my work had a positive effect, as other people in the project objected too and so the contract was rewritten and there was a green light.

Well, here I am sharing with you that the book has come to reality and has been made and is releasing later this month! All the artists/contributors involved retained their copyright and were "paid" in a single copy of the publication. 

The book is a beautiful collection of stories of infertility from a myriad of perspectives and it is heartbreaking and beautiful, and my artwork and words are collected in it.

It is quite surreal, and a deep wonderful thing from so much loss.

There will be publicity events all across the US, and I have agreed to be available if there is something that sits okay with me.

You can read more about the book: HERE

Book name: Infertilities: a curation

Wednesday, August 16, 2023

Memory of loss, and a little growth

**trigger warning: miscarriage** 


Today marks the anniversary of my final miscarriage.

I wrote about it HERE when it was happening.

I was alone, and one of my old-man cats sat on me or sat with me the whole time. It was unlike him, and now I am thankful he sensed that I was very alone, and losing my final attempt of motherhood. He is woven into the memory of the days.

Since then, when this day arrives I remember that final loss as the end of the pavement. A path I was familiar with that was now suddenly, unpaved and new and unknown. I took a self portrait that day, strangely I had a slight smirk. Maybe it was reflex to smile, and then at the same moment, I realized it was not happy or sad...but just was. That is the lingering feeling now.

It just was

I think of my star child often; sometimes they come to me in visions or dreams....other times I suddenly feel like I have forgotten to pick someone up or that the person I want to turn to has walked away, and I am left standing alone, staring into the ether.

They never got big enough to ever know completely. 

Now several years later, it is a day like others, except there are pauses along the way that I take to reflect and send love out. Much like days of loss for my grandparents and friends and companions that have left this plane of existence.

I think that is growth...I have learned how to carry the sorrow in a manageable way. Does that mean I have forgotten it or moved on....not really. The Barren has been pointing out and gazing at small humans much more often these days and I think that has been a revisited heartbreak for me and him. We are emotional and empathic people, so this is natural for us...but with a bitter twist of our own loss folded in.

So I send extra gentle hugs out to you all, as you remember your losses after reading this.

We are the broken but not lost




Thursday, August 10, 2023

Bread was my life

I was reading posts this last week, well I read them on almost a daily basis and read this one by Mel of Stirrup Queens during her weekly Roundup, and it seemed to trigger me. 



The question was: Which favorite food would you never eat again if you were told you had to give it up? You couldn’t cheat and name something you didn’t really love. You had to take one of your favorites and say goodbye forever.

Sadly, this isn't a hypothetical question for me anymore.

For me it is Bread: toast, sandwiches...there are many others, but this one seems to always float back to the top of the puddle of tears.

In fact even reading the question brought back memories from the schoolyard of who you'd rescue from a sinking ship, your mom, dad or brother...and I could never answer the question, as it always sent me into a spiral of sadness and despair trying to figure out how I could save them all...

I have found my list to be extensive and at times VERY HEAVY. Laden with sadness and restrictions and constant thinking how to make situations work.
This is not a foreign landscape for me, but as of the last almost year, my trek has become almost vertical in its scale. Becoming vegetarian at 16 was new territory, then vegan at 42, then, vegan, gluten-free and anti-inflammatory/no nightshades at 52 has definitely been the hardest.

I have always been a person who isn't comfortable at ALL with people making a fuss over MY food choices. I will agree to go anywhere when dining with family or friends. Always navigating the menu to not make it a big deal and remind myself that I am there for the company not the food.

The Barren and I have worked hard on finding something in many of our favorite locations, so that he can on a whim bring home something or we can have a date out out. He is BEYOND graceful at always trying to find someplace new when we go on adventures to make sure I can fill my belly with something.

But I miss many foods: I miss summer tomatoes and grilled eggplant and bell peppers. I miss not being afraid of being in pain over a simple food choice. I miss the culture that is food...
*I am having a small pity party*

At my last infusion my nurse asked me if I would like any snacks while I sat and waited for my IV to finish, and I smiled and said no thank you. She then realized that I couldn't, and said I was so strong.
This made me feel uncomfortable, it seemed like she picked the wrong words.
I am a rule follower, my doctor laughed at the idea that my vice is a meal with white rice or a white potato in a soup.

Sometimes I feel the weight of having to make all these choices every day.
So my pick to the question is bread....I have tried A LOT of the varieties available.
I have even been known to go to other cities to find a loaf of vegan gluten free bread, 
so see if it tastes okay.
Only one bakery (about an hour away) made one I liked, but sadly, they just shuttered their store because of increasing costs.
Most of the commercially produced bread has eggs or leaves a bitter after taste from sorghum maybe?

So I am left without cinnamon toast as a comfort food.
Mind you, I am a creative woman, and 
I have started making a stack of new recipes...but frankly it is becoming exhausting.
I think I foreshadowed this happening when my Mama needed to find soy milk when I stopped breastfeeding and it was nearly impossible. So they just gave me regular milk and I had a constant stuffy nose and tummy aches pretty much until I went vegan! 
So I am creating a new lifestyle, a new fussy way of eating/living.
I don't have to like it, I just have to eventually accept it.

In many ways this question is very much like infertility. What would you give up even though you loved the idea of it....sigh

What would you pick?

Wednesday, July 26, 2023

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?