Repost: Exploring the Term Disabled

I met with my therapist today. I had given her this book; she read it and enjoyed it so much. Our discussion reminded me how great this book is, and how it should be a reading requirement.

Sometimes what has happened to me is quite serious; devastating, unfair, horrible… But other times it’s not so serious. It’s ok to laugh. We worry so much about being “PC” but it’s really to find the humor.

Something that people have to deal with is incorrect assumptions. The quick and easy assumption is not working means a person is lazy and has no purpose. There’s a lot of barriers preventing someone from being able hold a job, part or full time. A person can have a purpose other than work. I, and I’m guessing others to, can feel frustrated with the implication, which sometimes isn’t even a conscious thing, that I’m worth less just because I don’t choose to have work in my life.

Please read this book. It’s such a quick read and filled with truths many people don’t think about.

I Love Puzzles!

Very early on in my recovery, Kevin bought me some puzzles. At the time the thought process was to go for 100-200 pieces because that’s what I could handle. Down the road when I progressed we could pass them on to his young nieces.

During 2020 when I was in day rehabilitation I placed a lot of weight on being able to multitask which included listening to a book while doing a puzzle. I was frustrated at myself that I could only listen to a podcast (I’d miss too much detail with a novel) and I would get discouraged when I’d want to work on a puzzle but only get a little bit done.

Thanks to Covid I’ve had a lot of down time. I pulled out those “simpler” puzzles and was pleasantly surprised; I was having so much fun!

I stopped viewing 100-200 pieces as solely for kids. I have major mobility issues and cannot shift to work from a different angle. I also have decreased dexterity; a larger puzzle meant spending most of the time sorting tiny pieces.

And two years later I got over my false thought that multitasking equaled a novel. I’ve assessed the amount of focus and revised my approach as to what I can listen to; a podcast, memoir or nonfiction are best.

Now that I’ve found my sweet spot I really find joy in working on a puzzle.

Hello!

Ok. Oh boy things have changed since I last blogged. My boyfriend Kevin moved in. We got a dog, a now 4 year old, 45 pound mountain cur named Glen. We spoil our baby boy so much. On our fourth date Kevin and I talked 45 minutes about dogs and I remember thinking I’d never met before someone that loved dogs as much as I did.

After 6+ years as an auditor I switched careers to become a strategic project manager in summer 2018. I approached my firm though in fall 2017 about wanting a switch.

Speaking at our firm annual partner conference, 8 days before my surgery.

I traveled a ton-London 3 times, I lived in Dublin for 4 weeks for work, North Carolina, Costa Rica, Colorado, Utah, Boston, New York a bunch for work, Puerto Rico, Paris, St. Thomas, Vegas twice, St. Kitts, the Bahamas, and Amsterdam.

Puerto Rico…yea we bought hats.
Hiking in the rainforest; of course I own a Survivor buff!
AM drinking-the only way to do it!
It was hot AF this day,
NYC for work; one of MANY trips there.
Costa Rica with Kirsten and Kelsey, my blonde twin
Hiking Garden of the Gods in Colorado.
My coworker Adam got married!
When we saw Great Comet again, it was just THAT good, and sat on stage.
Amsterdam, no filter : )

Kevin’s sister had a sweet baby girl, Kylah Marie in October 2017.

My coworker/work twin Kate got married.

Life unfolded.

Most of the bunnies out to dinner!
Right after I told them about Kevin.
She was amazing.
Remember when I described what you need to wear for a Chicago winter and my London coworkers were baffled?
Work family photo (sans Jane).
Kirsten just tolerates our antics which obviously include a selfie stick
Classic.
Breakfast before work!
Exposing bae to my theatre obsession.
At the Shedd doing THE BEST birthday gift-thanks Jeannie!
Glen wanting me to stop traveling so much.

But the biggest thing was in October 2018 I had a massive, thankfully benign, brain tumor removed. It was slow growing; we’ll never know when it started but maybe since I was a child. Unfortunately it was in the cerebellum, meaning I had to learn to walk and talk again. It took me a loooong time to recover and I’m still working hard every day on stuff we all take for granted. I know I used to.

Of course I selfied.

Everything happened really fast. I went on a work trip to Philadelphia, had a weekend with Kevin and Glen carving pumpkins, on Monday I went to urgent care, Tuesday a doctor, Wednesday I got an MRI, then Thursday I got a call at work to go to the ER. I was admitted that night and had surgery that Saturday.

When I went in, they didn’t know exactly what was up. They talked to me about cancer and I chatted with a ton of people in the ER. I was at the hospital a while before I thought I better call my parents. I know I put on a brave face but I was so terrified. Thankfully my boyfriend’s sister is an ER doctor, she was on vacation but took the time to call the ER then talk to my neurosurgeon. Thank you Jess.

Everyone should have a healthcare power of attorney and you should have it electronically.  It was so satisfying when I was admitted to tell the nurse “why yes I have one and I just emailed it to my dad.” And if you have a family member in the healthcare industry, they should be your executor. I’m so serious about this-call a lawyer, do it and forget about it. I don’t care if you’re in “perfect” health-look at me. Do it.

Gleny hung with his cousins and stayed with Jess and Brian while I was downtown.
Christmas 2018
My therapy primaries; Kate (speech), Erica (OT) and Kristia (PT). Love these three.
Theatre with two of my Sirens.
My work bestie Adam D. got married!
My amazing downtown PTs, Crazy Kate and Amy.
The Shedd with my honey.
Kevin’s best friend TJ got married and he was the best man!

My doctor said I’d be back working from home in 3 weeks; I’m still recovering. I had what’s called a traumatic brain injury, or TBI. I also have ataxia, which basically is not having control of your muscles. It’s much better now; in the hospital I needed netting and I slept poorly because my legs flailed.

I was in the hospital A MONTH. Not just in a regular room, but in ICU. Let that sink in…

Movement has been a huge part of my recovery. I’ve been a dancer since I was 3 years old so my legs are strong. In my adult life I worked out consistently. Pre-Covid I went to a personal trainer 2x a week, Pilates, a core class, and someone came over to do yoga with me (she used to own a studio). Now I walk daily (outside weather permitting), do yoga 2x a week, and work out in our basement. We have a ballet barre, a mat, a BOSU ball, a Stealth, a TRX...yea, I can get my sweat on.

We’re guessing the tumor removal surgery nicked my optic nerve. So all the vision therapy in the world wouldn’t have helped. I have bad double vision and it’s probably the reason I still cannot balance all these months later. I had surgery in January that partially fixed it and I have another surgery in July. There are 6 muscles around each eye and in January I got work done on 1 in my left eye and 2 in my right. I won’t lie; this surgery was probably the most pain I’ve ever experienced. I was awake (they had to sit me up and check if I still had the double vision), my eyes were open and I was staring into the bright light for over 2 hours. I just sang in my head (the soundtrack to Six) and thought of Glen. My doctor is confident he can totally fix my double vision with the second surgery. He was able to fix the vertical issue. The surgery in January was 3 dissolvable stitches between both eyes. The next surgery will be quicker; probably 1 stitch on each eye. For now no contacts and no swimming pools. My doctor cleared me for everything else. I was so scared I couldn’t go back to normal things so that was a relief. For now, I have prism on one side of my glasses but I had an eye exam after and no change in my vision. Everything is clear and I see some single, if my head is straight or if things are close.

My doctor took these out of my eye since I was in pain!

The tumor was on my left side, and I’m left handed. In therapy they tried to get me to write with my right hand but I’m stubborn, that made me mad (being a leftie is something I’m really proud of) and I refused.

My handwriting is really wonky; I now type my messages. My speech is slow and totally not my voice, but I’m working on getting it back. I cannot drive (yet). I’m not working but my company has been awesome. I’m on COBRA but I’m still an employee.

I suffered some pretty horrible depression. I’ll talk about it more in later posts but I take medication daily (low doses but still) and see a therapist. But to borrow from one of favorite actresses Sierra Boggess and her favorite quote: You are so enough. It’s unbelievable how enough you are. I have that quote on a workout tank.

Want to lose weight? Have a brain tumor…jk jk jk. When I was downtown, I lost 38 pounds mostly because I had a feeding tube. I’m still down 15 pounds from when I checked into the hospital.

I have two VERY vivid dream memories of the hospital just chugging water. Man sometimes I was a terror of a patient. Early on, I loved fooling unknowing people so I could chug water even though it really hurt. For safety reasons, at first I had to have nectar thickened liquids. They are gross-thankfully now I can eat/drink anything.

I just can’t get into how awful the coronavirus is; it’s going to be weird for a while.

It’s been a long, LONG 19 months full of pain, doubt, sadness and anger but also a lot of hope. Compared to other people with TBIs I’m so lucky. No, this for sure isn’t what I thought my future would look like, but I’m making the best of a horrible situation.