What DO You Do? A Chronicle of the Last Six Years

Today I received a response on OkCupid (a dating app I haven’t look at in many months) – six years later, almost to the day – from a man I had messsaged. This stranger and I had a good giggle about the severely delayed response, and is profile mentioned how much he enjoyed fishing. And then he asked “How’s your fishing?” To which I replied, “I don’t fish”. And then he asked, “What DO you do here then?” I guffawed! What do I do? That gave me pause. This, friends, is my reply (with quite a bit of additional detail):

I’m not really sure how to answer. It’s kind of like saying “If you don’t fish, what DO you do?” Lol. On this site? Well this is the first conversation I’ve had here in quite a while so HERE, I don’t do much. If you are asking what do I DO? Well, I’m currently recovering from Covid, been sick for twelve days now. Still testing positive but my Covid symptoms are much improved.

I am currently on disability from my teaching job and have been for the past four years (two car accidents in two years= post concussion syndrome) and am about to retire. I’m a relationship and sexuality coach and mentor.

I am mom to an adult daughter who is here visiting but I can’t see her until I’m well. I’m a wife in a poly marriage and I have a boyfriend. I have a mom I’m close to who I see regularly. I’m an actor whose last show was just before the onset of Covid, and who had one line on a TV show last year, a writer who is (very slowly) writing a book, a podcaster (I co-host a show with my husband), and I spend the rest of my time resting or doing my maintenance exercises. I have two pups I love and walk and spend time with. I nap each day in the afternoon so I’m able to be functional in the evenings.

Six years ago when I messaged you, I was a Drama/English teacher who acted in community theatre at least once a year (even had my own theatre company for many years), wrote and directed musicals and plays and didn’t see family til summer because my schedule was packed. I served on committees and taught courses at lunch and after school. And I liked it that way. My evenings were spent at rehearsals or marking. My weekends were spent working on productions or going on road trips or dating.

Actually, the message you received was sent to you three days after I met my husband, Greg. We met the summer of 2016 and he was polyamorous and I was just out of my third marriage, which was monogamous. I figured he would be a good fit for me, because I didn’t want anything too serious and he wouldn’t want to marry me (he was married at the time). Heheh. Little did I know what would happen next. We fell in love, his marriage ended and we moved in together. Since then, the last six years have been some of the most challenging of my life. I’ve had a lot to deal with, and so has my family and frankly, the world.

In January of 2018 I suffered my first car accident (the driver was texting, ran a red and T-boned me) and three weeks later, I had to stop teaching; I had no idea it would be permanent. I wasn’t told by the doctor who saw me I might be concussed or how to treat it so I didn’t. My dad had a stroke that landed him in hospital a month after my accident, and my mother needed me. I would help her sell her four level split and move into an apartment, and if I was feeling well enough, I would make the trek across town once or twice a week to see my dad or to try and assist my mom. My symptoms got worse. I couldn’t read without raging headaches that would send me to bed, and I couldn’t go out or watch TV without sunglasses on. I was tired all the time, dizzy and off balance, my vocabulary diminished, and I spoke slowly and with effort much of the time. I forgot things all the time and had trouble following a conversation or the storyline of a show. My anxiety and emotions were out of control. I didn’t understand sarcasm. I was attending concussion and physical treatments of all kinds to heal myself – physio, massage, chiropractic, osteopathy, psychology (I was diagnosed with PTSD), and neurofeedback. I was depressed and angry for a year.

Then, I started to feel better and like I might be able to do a play. I audtioned for a short one, and when I got it, learned my lines by listening to a recording. I was excited to get back to acting. We began rehearsals and suddenly found out in January of 2019 that Greg needed surgery. He would go on to have one of the most painful and difficult recoveries imaginable, during which I became his caregiver for three weeks. It was a lot to manage. I thought I could handle it all. I was wrong.

In February of 2019 I had a mysterious episode of chest/jaw/arm pain just as the play was opening, that would escalate over the next two weeks into breathlessness and overall weakness. It was described by medical professionals as “a metabolic breakdown” or a “systemic overwhelm”. During the run of the play, I was going to the hospital to be checked out for the pains in my chest and legs. After the show ended, I was unable to do much except lay on my couch for three weeks while pain coursed through my body, and I found it harder to breathe. I tested borderline for bloodclots (and am still convinced that’s probably what it was). I ultimately went for a CT scan, ultrasounds, plenty of bloodwork followed by two MRIs (a few months later). After three weeks of being bed-ridden I was able to move about more, but it took another three weeks for the pain to go away. My neurologist suggested it was a panic attack, but I’ve never heard of one lasting for that long or with those symptoms.

When I’d recovered we took a lovely trip to visit Greg’s father and his wife. Things were looking up. Then, Greg and I got married in the summer of 2019 (definitely one of the highlights of the past six years). We got a new puppy. I thought that would be good for me and give me a sense of purpose. I was wrong. Getting up every few hours with a puppy to take her out to pee was nearly the end of me. I was delirous with symptoms. I wanted to rehome her, and ultimately, we decided not to, but I struggled hard for a couple of months. Things got easier with her care and I started to improve through that winter.

Just as I started to consider that returning to teaching might be a possibility, I had a second accident in January of 2020 which set me back almost to square one again. I was devastated. During that time, co-incidentally, I was in another play. Not surprisingly I had a resurgence of concussion symptoms and Greg drove me each night to the theatre for a week. I finished the show and would come home to crash, and could do nothing during the day until I had to go to the theatre again. It was very difficult.

The play ended in February, I recovered, and one month later, Covid arrived. I was beyond anxious and in a constant state of managing my concussion symptoms. Greg got sick in April and we weren’t sure if it was Covid, so he isolated in the main bedroom and I brought him food and medicine every few hours for three weeks. I listened to him cough all through the night and my concussion symptoms peaked. I was exhausted. My lungs hurt but I didn’t develop a full illness, thankfully.

A few months later, in June of 2020, my love would suffer the first of two significant mental breakdowns when he was asked to return to work after four months away from his toxic work environment. He couldn’t regulate his emotions. It became clear he couldn’t return to work. I witnessed his doctor try to dismiss and minimize his condition, so I went to each appointment with him, and advocated for him, until we found a new doctor and he felt comfortable enough to go on his own. He started anti-depressants, began a regular treatment programme and he got much better. He took a course for certification and started doing coaching himself full-time. We went through lockdowns and dealt with our anxiety and the odd depressive and many anxious episodes – his and mine – but overall we managed that next year fairly well. I did vision therapy virtually and did physio exercises at home. We face timed regularly with family and friends and I went to see my parents when I could.

As soon as it was possible, we made sure to visit our grown kids (and Greg’s grandkids), locally and in another province. Both visits to BC in the summer and fall of 2021 were overwhelming for different reasons and resulted in loads of symptoms. After each one, I was in recovery for many days. While in BC I tried to drive the car on the highway and couldn’t as my PTSD symptoms suddenly returned.

In September of 2021, my father passed away after three and half challenging years in a wheelchair, housed in care facilities that neglected him, and after my family watched helplessly as he deteriorated into dementia.

My husband’s second breakdown (he now refers to them as “breakthroughs”) would occur less than a month after my father’s passing. He had been trying to wean himself off of his anti-depressants (doctor-supervised). This time however, Greg would be hospitalized after driving his car into the garage wall. When we told me he was a danger to himself, I drove him to hospital, checked him in and drove back and forth to visit for a week while he was stablized. I watched, and worried, took care of the dogs and tried to remember to shower and eat. I was overwhelmed and my concussion symptoms were very high. I took my mom to see my daughter a few days later, my symptoms raging, but I needed to see her. She was deeply grieving her grandpa’s passing as well. The trip had been planned, and my husband (still in hospital) told me to go. So I did. It was all a blur of coping, emotional overwhelm and pain, helping my mom and trying to be present for my kiddo. I came home to Greg, who entered into another treatment programme, and continued planning my father’s memorial for the end of the month. Another blur of increased symptoms and anti-anxiety meds, pain killers and naps.

Fast forward a few months to May of 2022. Greg is feeling more stable and has better treatment and tools. But my kiddo needed me. She was having her own struggles, and so I made the trip to see her. I was unable to nap while there and my symptoms got worse again. I came home to crash for several days.

Don’t get me wrong. Everything I did for my family, giving help where I could and the visits – it’s all part of a life well lived – and what anyone would do, and I would do it all again. I NEED to be able to be there for others too, if I’m able at all; even with limited capacity and worsening symptoms. I don’t blame them or resent them for anything. I love them and am so grateful for them and have no regrets. My symptoms are just part of my new normal now that I have to live with.

I spent the last four years utilizing every type of therapy offered to try to get back to a place where I could teach again. I didn’t accomplish that goal but did make some improvements. My balance and vision are better – still not great (I still get dizzy on stairs or if I turn too quickly and have double vision if I read too long), but better than they were, and my vocabulary and ability to speak articulately (when I’m not flooded) returned, thankfully. I still deal with many symptoms daily – headaches, light and sound sensitivity, fatigue and overstimulation, tinnitus, body pain, lack of concentration, inability to predict my limits, sudden loss of balance. My neurologist gives me 31 botox injections into my head and neck every few months to keep my headaches manageable.

So…essentially a lot of my time that had once been about doing fun things that I was passionate about like teaching and directing and producing and seeing friends and visiting family, became about physio and vision therapy, appointments and assessments, rest and recovery. Learning and adapting to my new needs as someone with a few brain injuries. Finding the balance between pushing myself and giving myself rest. Coping with challenging symptoms, feelings and pain while trying to help and support my family members. Things I once loved to do in my spare time, like road trips, traveling, reading, writing and acting, became difficult. I grieve my losses while trying to celebrate my achievements, however small.

I pushed myself to take online courses to become a coach, to write this blog, to develop two websites (steep learning curve – took me many months and many mistakes) and to create a podcast. I was determined to find out how to do something I cared about so that I could lead a life with meaning and purpose; all while managing symptoms and attempting to still be a good partner, daughter and mother. I kept acting whenever I could, even though it was way too hard to be considered fun as I’d have to nap on set, miss rehearsals and I would frequently be battling ongoing and worsening symptoms whilst medicated. I pleaded and bargained and got angry with my injured self and I would do too much and pay for it afterwards by being unable to function for hours or days at a time. And I still do.

Whenever I have a good day, I am as productive and present and focused as possible, and whenever I don’t, I try to give myself grace and focus on what I CAN do to stay positive, even as I manage symptoms, anxiety, grief and the needs of my loved ones.

But, no, I don’t fish.

ADDENDUM: Upon re-reading this, I think he may have been speaking metaphorically as in “fishing for relationships”. Hah! See, since my brain injuries, I often miss the metaphoric subleties of language and am VERY literal.

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