This Year of Recovery
Last picture taken of me before my surgery.
My grandkids and I are playing with an art project.
This week is the one-year anniversary of a necessary vascular surgery that was unfortunately followed by blood clots, and subsequent brain injury. The date looms large on my calendar, and I don’t quite know what to think about it. On one side, I’ve made an incredible amount of progress, and I’m delighted to be alive! On the other side, it’s really hard to face how much my life has changed, how much I have changed.
What do you do with a remembrance that you don’t really want to remember? A date each calendar year that you wish you could erase. This is my attempt at putting the year into some sort of understandable language. Maybe if I can find the words, it will be easier to comprehend.
Progress
Progress
When I first came home, I had blurry vision and jumpy eyes. Over the past year, I gotten two sets of new lenses with different prisms in them. I’ve done eight months of Vision Therapy. I’ve gone from being unable to read or do computer work to reading some and doing an hour on the computer at a time! I’ve gone from being in a wheelchair, to using a walker, to walking with trekking poles, to walking on my own.
At first, I slept sixteen or eighteen hours a day. This changed slowly and right now, a good nine hours and a one-hour nap sees me through the day. I was really weak and unable to exercise. Now I bike on my stationary bike, sometimes for up to half an hour! I’ve gone from walking two minutes on the treadmill to being able to jog, twenty minutes at a time!
And best of all, I’m back to writing. This has saved me in so many ways. Working on my newest book, finishing edits, and sending it off to the publisher have been a fantastic boost to my morale!
My knowledge of brain injury has gone from nonexistent
to almost impressive!
About four months after my injury, when I was able to be on the internet a bit, I didn’t even know what terms to look up, what names to use. I saw the letters TBI being bantered around and they didn’t mean a thing. I had to look them up to see they referred to Traumatic Brain Injury. I’ve gone from about zero knowledge to a working understanding of treatment options, duration, prognosis, and a general understanding of what happened to me.
I am not alone.
o Every 21 seconds someone in the US sustains a TBI.
o 2.8 million Americans every year.
o Leading causes of TBI are falls, motor vehicle crashes, assault, recreational or sport injuries.
Specialists galore have been visited
Optometrist. Vision Therapy Specialist. Optometrist who is a Brain Injury Specialist.
Physical Therapist. Vestibular Therapist. Cranial-Sacral Therapist. I’ve been going to a physical therapist who has CBIS after her name. She’s a Certified Brain Injury Specialist. Who knew such a thing even existed?
M.D.s and D.O.s and Nurse Practitioners and various assistants who specialize in Vascular Surgery, Neurology, Orthopedics, Audiology, Gastroenterology, and Family Medicine. I can hardly keep their names straight!
Still, even after a year of the best of care and therapies, I am not who I was.
My husband tells me, “No one ever is the same.” He’s right. We change each day. Move houses, or jobs, get Lyme Disease, divorce, remarry, buy a dog, retire. Each book we read changes us. Each show we watch. So, yes, we are always changing, but it’s more than that.
I went into the hospital, a go-getter, a runner, a world traveler. The last bike ride I went on was twenty-eight miles. I loved my life.
Right now, I can’t ride in a car without getting dizzy and overwhelmed. I’ve spent most of this past year within a few miles of my home. Weeks go by and I don’t go anywhere.
I miss driving. I miss traveling. I miss seeing more of this wild, wonderful world.
I’m dizzy constantly and frequently nauseated. I can’t walk a straight line. My brain no longer knows how to filter out excess noise, motion, and activity. I’m easily overwhelmed and need to sit in a quiet room. No talking please. This is my life.
So how do you live when
your life isn’t the life you want?
That’s the big fat question I face every day.
How do I continue? There aren’t really ‘answers’, nothing is going to ‘solve’ what’s going on, but here are some of the things that have helped me this year.
Books that Spoke to Me
o No Cure for Being Human by Kate Bowler (Her podcast “Everything Happens” is spectacular)
o Between Two Kingdoms by Suleika Jaouad
o Prayer in the Night by Tish Harrison Warren
o The Comfort Book by Matt Haig
Online Community that Encouraged Me
“How are you doing?”
The most frequent question I’ve been asked this year.
I want to say, “Great!” People who ask, want to hear that I’m better. I mean, I look okay. So, I must be okay. Right? People want to hear that my life is back to what it was. That progress is going on forever and ever, amen.
Brain injury, however, often defies an answer. This is the most surprising thing I’ve learned. How long it takes the brain to heal, and what an unpredictable, up and down journey it is. My husband says my healing is like the stock market! Somedays up, somedays down, but over the course of time it goes up. That’s the theory anyway.
The reality is that healing is unpredictable, there are lots of setbacks, and each morning I wake up having to reacquaint myself with myself. Will it be a dizzy day (or hour)? Will I mostly lay on the couch or be able to bike and run on the treadmill? I never know ahead of time.
Living with the unknown is something uncomfortable that I’m beginning to make friends with.
A year of questions, fears, loneliness, and unknowns has a way of changing a person.
I asked one friend, “Have I changed? I mean, like, ME. Who I am?”
She answered, “You’re softer now.”
I guess that’s a good thing.
I’ve learned a lot of patience. Learned to look for, see, and grab onto small joys.
Best podcast of my year was this one!
Mr. Hinton was on death row for over thirty years. Framed and sentenced for a crime he did not commit. When asked what helped him keep his sanity, what helped him survive, he said, “Thankfulness.”
He said there were people in this world who were starving and they’d gladly change places with him. There were people who were dying of cancer; he was healthy. There were people who had no home or were fleeing war or … or … or … He learned to be thankful. He was alive. He had food. His mother was still alive.
It was the most meaningful podcast I heard all year. And it changed me.
I’ve chosen “THANKFUL”
as my Word for 2022
What he said is true. There is SO much to be thankful for.
I could have this same traumatic brain injury and be a young mother of twins or triplets, completely unable to find quiet and time to heal.
I could be homeless and dealing with brain injury. Many people are.
I could be in a wheelchair still.
My husband might not have stuck with me.
But none of these things happened. Instead, this year held wonders above and beyond all of my challenges.
This year I signed a contract for my next memoir, The Clean Daughter: A Cross-Continental Memoir.
This year, my children and grandchildren visited me (driving five hours each way) SEVEN TIMES!
I can see. I can hear. I can paint. I am not alone. I have a home. I have food, and warmth. I am loved.
Thank you!
Thank you for the kindnesses I’ve been shown this year; they are enormous. From the depth of my heart, I want to thank you for each meal, card, text, prayer, thought, blog comment, Facebook wish, and visit. They have truly carried me through many a dark and lonely day.
My gratitude to my husband is immeasurable.
There are weeks that go by when he’s the only person I see. He’s been a gem. A shoulder to cry on. A willing hand to pick up and do the things I’m not up to. An ear listening to my frustrations, angers, and fears.
So, as this one-year anniversary comes and goes, I want to look ahead and say, “Here’s to the unknown!” Which is another way of saying, “Here’s to life!” Whatever it may be.
Wishing each of you a thank-filled and wonder-filled 2022.
Love always,
Jill