Pushing through and pushing pause

Right now I am feeling my long term TBI.  Middle May to mid June has been a combination of getting designs done for a big new project (that I think it looks like we’ve gotten with Möbius Keramikk), moving into my new apartment, a new studio space, my NeuroMaps event on June 1st, and being mostly in Charlottesville as my dad battles terminal cancer. 

To say I am exhausted is an understatement. I met with my therapist today, after about 6 weeks of not being able to due to all those tasks, and the help I was giving at my childhood home. (I am a huge advocate of using all the resources available to deal with mental health: psychiatry, therapy, groups such as the TBI check in chat for me, exercise, etc.) What my fabulous therapist said to me towards the end of our session (I’m summarizing), is that life has thrown me a number of curve balls this year, but that I’ve handled them and she’s confident I will continue to. (With all of the tools I have acquired to help me cope in mostly healthy ways.) 

I have been feeling the need for life change in terms of self care through exercise. We made a plan for me to go on two 10 minute walks a week, with friends or solo. I promptly followed this up with some work and then took a long nap this afternoon. 

My dad almost died last month due to complications from his treatment. Had we not gotten him to the ER when we did he would have. His 4 siblings and a few of my cousins were visiting along with my brother, thank goodness, as he basically carried my dad to the car. It was so scary as I shifted my role to supporting my mom while she was with my dad at the hospital all day, every day. And of course, supporting my dad also. 

There were times during the past few weeks that I will truly treasure, sitting watching UVA baseball and holding hands. Watching jeopardy, and cuddling up to my father like I haven’t done in a while. And getting to see so much family! It was amazing being able to lean into them and the love that encased us all. 

The reality is that now my father’s health is in limbo. We all know that someday either sooner or later, a tumor will develop that won’t be treatable, and then he will only have 2 weeks. I believe this limbo is what my therapist was thinking of when she was confident I will handle it. So much of my life has been in limbo the past few years.

And now that it seems like my business is FINALLY almost through the big wrench thrown in our way, I have put my father and family as top priority. I would not change this for anything, but I am feeling my inconsistency with my work and how necessary it is for me to step up to the plate again. 

And here comes long term TBI waving at me and saying “hello old friend, let’s hang.” I remember before COVID when I was getting my school running I’d give myself a month off every 6 months or so. It was to do only what I had to and the rest of my time was free to spend as I wished. I have been craving a month like this for a while, and my month mostly off was showing up for my family and trying to do as much behind the scenes tasks to give my mom time to sit and rest herself. 

Here is a chart from https://www.cognitivefxusa.com/blog/traumatic-brain-injury-long-term-effects-and-treatment

This chart lines up with all that I’ve read, experienced, or explored with the scientific studies I took part of in 2021 when I discovered long term TBI and my status as a disabled woman. 

Of the early symptoms, I had them all. My ears still ring 21 years later, and my eyes are feeling very tired right now (common when I am worn out - as usually they sparkle), and the fatigue, and feeling foggy carry over into delayed long term TBI, of which I check all the boxes except irregular hear beat. 

For me, the more worn out I am, the more acute they become. Intellectually, I can understand what is happening and why, but there is no solution other than self care. My executive function has gone down the toilet and it is driving me crazy. My fabulous studio manager and I are getting the studio spaces set up for production and I have flat out told her to find her own logic and follow it, don’t listen to me as I cannot prioritize need. 

With my fabulous business manager I have told her to schedule one of her working days a week to essentially give me the tasks that need to be done one at a time. It’s a bit humiliating to realize that I am not capable at this moment of following a list of tasks, staying on track, and executing. But that I where I am. 

One of the reasons I talked to my therapist about bringing exercise *cough cough, two 10 minute walks a week* in is because I realize that just sleeping won’t solve this problem, but is likely to exacerbate by anxiety and the low level depression I have been dealing with. 

That is also why I am writing this. So much of running a business is about the optics. Right now there is a ton to be grateful for, the new contact with a top tier museum, being featured in British Vogue, the number of folks wanting to work with us. Then there is NeuroMaps, the upcoming launch of Via Arno, a company in London we are working with, the fabulous outfits my incredible stylist Jenni helps me find. My business is kicking ass right now! 

But there’s the other side of the coin, me the owner and artist and 21 year survivor of traumatic brain injury who lives in a limbo between disabled and functional with disabled being in the win column right now. 

When I got sober in 2016 I remember saying to myself and my family that I would not be shamed for being an alcoholic. I had been shamed by myself and others in the 13 years prior as I tried to navigate life as a TBI survivor with no knowledge or long term TBI or that my injury classified me as disabled. 

This is what I am leaning into now as I am on the struggle bus of getting my normal back and having to confront the current acute symptoms of TBI and how they pertain to my capabilities of running my business and being present for my family. 

When I talked to my dad today he asked if I’d be home on Thursday and my heart broke when I said I wasn’t coming back until July 10th. So as I finish writing this I will look for Amtrak tickets to get home on Friday and depart Sunday. I could drive and it would likely be cheaper to, but the drive usually leaves me out of sync for a day. Right now when out of sync is my unwelcome pattern Amtrak and a mask seems the best option. 

So, I will continue to do what we survivors do: cope, adapt, write gratitude lists, and recover. For all of the curve balls that I have had thrown at me in this life I have walked through them stronger and grateful for the lessons learned. Here’s hoping the lessons from this long term TBI streak arrive sooner rather than later!