Diagnosis, Two-Year Anniversary, Plus a Vacation!

It’s very strange not to remember your own life.

I’ve lost four months of mine.

I have no memory of them - well - a couple of fleeting fragmented memories remain. That’s all. Four months and a few seconds of memory. That’s why I’ve begun writing about brain injury. I want to fill in the gaps and try to understand both brain injury in general and my brain injury specifically.

It’s been over two years since my injury and I have finally found the courage, strength, and ability to go back and read through my medical charts. In doing so, I noticed that one doctor – an ophthalmic neurologist specialist – actually gave me a diagnosis.

He said I had something called Central Positional Vertigo (CPV). A type of persistent vertigo caused by damage in the brain stem.

My appointment with that specialist was eighteen months ago.

I’ve been going to various physicians, nurses, specialists, and physical therapists since then.

All of these medical professionals talk about my “traumatic brain injury,” a medical term so vague as to be barely useful. Not one of them has ever mentioned CPV.

I was quite excited when I found out that I had a specific diagnosis. Maybe, knowing the right words would open up new doors for therapy, treatment, or medication. Finding those specific words, hidden in my chart, seemed momentous after two years of vague ideas and uncertainty.

I was excited to share my news with my physical therapist, who not only has a doctorate in physical therapy, she is also a Certified Brain Injury Specialist (CBIS). The next time I saw her, I told her about the CPV diagnoses and asked her about it. She did some tests and confirmed that I have CPV.

Then she stumbled over her words in a way that was uncharacteristic for her. “Central Positional Vertigo is ... well, there isn’t any ...” she hesitated, and I stepped in and said it for her.

“Cure,” I said. “There isn’t any cure.”

 “That’s a good word,” she replied. “There is no cure.”

“There is no cure.”

Those four words gave me a lot to chew on.

My dizziness and vertigo and nausea and lack of balance and exhaustion are not going to go away. No matter how much therapy I do. No matter how much I hate it, no matter how diligently I do all the exercises. The root cause of my problems is not going to go away, ever.

No cure.

Coming home from her office, I was glad there was a trip in the works to look forward to.

A week later, my husband and I flew to Arizona! My first flight since my brain injury. The flight itself was fantastic. No problem at all. Huzzah! The airports, however, were overwhelming with noise, motion, flashing lights, moving walkways, kids crying, people running to catch flights. Let’s just say it’s challenging to navigate airports when your nervous system is overwhelmed, and you can’t get away and you just have to wait it out and endure the chaos and have a four hour layover to boot.

Our vacation was an experiment in learning how to live my new life.

The highs of hiking and being outside in the sun, seeing a purple-headed Costa’s Hummingbird, watching a bobcat walk by, were fantastic. We loved the trails, sun, warmth, and outdoor vibe. I picked a fresh tangelo from a friend’s tree in their backyard. We hiked for miles and miles, even going up some pretty decent ascents at Lost Dutchman State Park and at the Boyce Arboretum.

I know it sounds perfectly ridiculous, but I somehow thought it would be vacation like the ones we used to take. I thought I could leave me behind and just go on a regular old vacation. But I brought me along, brain injury and all. I don’t know why this was such a revelation, but it was. I could only do one activity and then needed to rest. One good day followed by one dizzy and overwhelmed and nauseated day. It was beyond frustrating to be in such a gorgeous location and have to sleep or rest a day away.

It’s hard not to be angry.

It’s hard to say, “It is what it is.”

It’s hard to see my husband get up for a run each morning knowing that I can’t run with him. It’s hard to lay down for a nap when I want to go to restaurants and museums and drive over and see the Red Rock area. But a four hour drive – there and back – was too much. It’s hard. And I hate, hate, hate being dizzy. I hate it. And it isn’t going to go away.

I had my two year brain injury anniversary while we were in Arizona.

I spent much of the day thinking about the past two years. I’ve come a long way and I am grateful to be able to read and write and walk and paint and cook again.

I’m so very grateful.

For so very much.

I also read, for the first time, about the grief that comes with chronic illness.

It’s different than regular grief. When I have a great day, I think Wow! I can do this. Then when a bad day hit and I am super dizzy and unsteady, it all comes back again and hits me twice as hard. This is my life: dizzy, nauseated, overwhelmed, exhausted.

The recurrent ups and downs of this hope-letdown cycle is difficult to handle.

A roller-coaster I’d love to jump off of. It’s also a part of the grief that comes along with with chronic illness. I’ve never thought about these things before, and they hit me pretty squarely.

When we got home, I enjoyed the pictures and the memoires and was so thankful that I could actually fly and travel and hike. I have so much to be thankful for.

And yet, a question remains. It doesn’t seem to go away.

How do I live?

How do I live when I don’t know what kind of day I’ll wake up to?

How do I live when my life isn’t what I wanted or what I expected it to be?

How do I live when I want more than I’ve been given?

I don’t have answers.

But I have found one thing that helps me.

I write four words at the top of my journal page each morning.

“I Will Enjoy Today.”

Theses words steady me.

On a bad day, I can enjoy the birds chattering and eating and hopping outside my picture window. On a bad day, I can enjoy the taste of food, or the fresh smell of a window cracked open, or a smile from my husband. On a bad day, I know I can still find something to enjoy.

And on a good day? Well, on a good day I make the most of it! Go to a restaurant, speak at a book club, run on the treadmill, paint a new picture.

As the fabulous author Kate Bowler says,

“Life hurts and life is so beautiful.”

Amen, Kate!

Yes, life hurts. And yes, life is beautiful!

Thanks for reading and for being a part of my journey!

I’d love to hear what you are finding that is beautiful in your own life, in your own Today.

*photo credits for the beautiful Costa’s Hummingbird to Glenn Seplak, found at birdnote.