Hi Everyone,
The Transition was seamless – said no person EVER! – Jena Schwartz
This last month has been a rough one. I’m so grateful for the moments we have that break this crazy world we live with.
Update: (Grab a cup of coffee, it’s a long one)
University of Delaware submitted the written changes for the research program. They are waiting on the IRB to meet and approve them. Once that is sanctioned, Corey can begin working at GoBabyGo Café.
Corey’s headaches have been off the chart this month with Mother Nature taunting us with a lingering warm rainy spring tease on somedays and a crisp introduction to fall just 24 to 48 hours later. The rapid change in temperatures and rain severely affect Corey’s daily function. She has chronic pain that extends to her face, neck and shoulders.
I believe some of the issues are exasperated by her glasses and stress induced jaw clenching.
We met a new Neuro-Optometrist in Lititz, PA. Dr. Collins was terrific! She is the first doctor to truly understand Corey’s processing time. Our initial visit was 3 hours. She schedules that period of time deliberately. Corey needed a few breaks and she needed time to process her answers. We’ve all been to the eye doctor. We all know how confusing the questions can be; “is it better with 1 or 2, now 2 or 3, or 4 or 5”…and then there’s the letter chart. Imagine looking at the letter chart and not remembering how to identify the letters! There was a time Corey could write but could not identify the letters of the alphabet. At times, she still struggles with naming some of the letters given the time, she usually get it.
Dr. Collins had heard of the Carrick program. She was thrilled to hear Corey is continuing her vision and vestibular therapy at home. The vision exercises she is doing has strengthened the horizontal muscles that control her eye movements, however her vertical muscles are still weak. Corey has a natural compensation technique of turning her head to the left as well as frequently blinks to see something close and tilts her head to the left sitting during a conversation and standing to walk. Dr. Collins believes this double/blurred vision. Corey’s head tilt and blinking, sends a message to the brain to reset the framework of what she’s trying to see. The brain adjusts its signal with the tilt. Based on the exam, Corey’s current glasses are overcorrected. That could be the result of her muscles getting stronger too…her vision is getting stronger because of the eye exercises.
Next week, Corey will begin wearing a new Rx with prisms built into the lenses. Prisms are not new, but Dr. Collins has been trained by a Doctor in Michigan that specializes in incremental prisms. To best describe what we mean, Corey trialed prism patches before. It was described to us this way; If prisms were money, she was prescribed 5.00 worth. The prism she needs today would equal .75 cents.
The prism and new Rx glasses will not only help to ‘fix’ her double/blurred vision, Dr. Collins believes she will walk straighter, her facial pain will subside, her headaches will lessen and her vision/vestibular therapy will begin to take off.
Corey will also be going to the dentist. I want to ask about a mouth guard for tension/stress release. This will be an exciting visit. Dr. G has known Corey since she was 2. She was the youngest patient he ever had sit in his chair. He was devastated to see her in 2011-12. She could not open her mouth and she could not communicate. This visit, she will walk in with a cane and gait belt and hold a conversation.
This past month has been filled with transitions. We’ve left Bryn Mawr, we’re finding our new rhythm at home, we’re trying to incorporate our own home rehab exercise schedule and we’re still dealing with sleep deprivation cycles, memory loss and emotional/behavioral outbursts. This is going to come out a bit crass; the bad days suck! They suck way more than we let on to most people and they drain us emotionally for days afterward. By “WE”, it’s me and Caitlin day to day. The not-so-good days are the days that give us the jolt we need to pacify our reasoning and acceptance of living with brain injury. They are also the days we remind ourselves that the not-so-good day was WAY better than the really bad day!
I don’t want to be Debbie Downer, but living with TBI is ugly and heart wrenching. It’s not an incident, it’s a life changing event for Corey, for us and for her friends. Not all days are bad. They typically surface after extended periods of stress, exhaustion, worry and simple fatigue. There are times we watch Corey as she struggles with a task, her loss of memory or physical ability and our heart is pierced with reflections of what she used to do and where she’d be “if” those stop signs were in place 5 years ago. It takes an enormous effort to consciously focus on our gratitude not our resentment when the reminders of her struggles are present in everything she tries to do everyday, all day.
The Neuro-Behavioral Psychologist we see in Philly, weekly, is a gift. She not only helps us develop cognitive strategies for Corey, she counsels us too. Last week she shared a poem written by Jena Schwartz (she inspired the tag line for today’s post). The poem has nothing to do with TBI yet it accurately describes transition for all of us.
Corey is truly amazing. What she has overcome in the last 5 years; she is a living miracle. I also want to give our family a lot of credit on how positive, upbeat and determined we’ve remained in spite of this catastrophic life event. That includes her aunts, uncles and cousins. It also includes our closest circle of friends but also our carepage family. Without your consistent presence, we couldn’t do what we do everyday.
The lessons we learn include acknowledging the days that suck, the days that are not-so-good and the days that we feel defeated. These days are part of the natural TBI landscape. The landscape of any challenge we face. The hard days, at times too heavy to carry, help lift the good days up. Believe it or not they inspire our smiles, the spontaneous laughter, highlight the achievements, and remind us to cherish the moments of pride and sincere joy that we are all survivors! xoxo
Excepts from
The Transition was seamless, said no person ever – by Jena Schwartz
October 20, 2015
The transition was smoother than I expected.
Oh, how I wish I could write that and mean it.
Just pick a big thing and I will tell you all
about it. Here, I will pass around a hat
and you can just choose an event.
The transition was exhilarating, and then.
Wait, there was more.
The transition was empowering, a rush.
The transition was terrifying, an abyss.
The transition was seamless, said no person ever.
The transition was effortless, like night to day
and day to night and poem to spoken word.
The transition was a relief, that thing
we’d anticipated for so long finally
behind us, under our belts, over.
The transition was brutal, like having your chest
zipped open and your heart exposed to air.
The transition was abrupt, giving us no time
to adjust, to prepare, to plan, to consider.
The transition was unexpected, and suddenly
we went from playing pool and smoking cloves
to her being in too much pain even to bathe.
The transition was gradual and then steep.
The transition was much more wonderful
than I could have imagined, after the initial
shock of it.
The transition was sad because it meant
something was over, and happy
because it meant something was beginning.
The transition was a chasm.
If I wasn’t careful, my foot would slip,
the ledge would crumble, and we would all go down.
The transition was a mirror for all of my worst fears
and fantasies, good and bad, grandiose and small.
The transition was elusive,
begging me to close my laptop forever.
The transition was more elating than anything
I will ever be able to describe using words.
It will live solely in memory for all of my days.
The transition was my time to shine,
and the shadow side of that glinting coin
was every question I’d ever asked about myself.
The transition was easy, like I’d known
forever how to stop being shy and how to turn
on a dime and how to embody power and power
and power and beauty and hot ****.
The transition sucked. It was hard. It was lonely.
The transition was stressful and bumpy
and isolated and vulnerable and human.
The transition was so long ago.
The transition was two days ago.
The transition was two hours ago.
The transition was ten minutes ago.
The transitions keep coming, one after another.
I can either love them and close my eyes,
listening as if to waves from a safe spot
on the open beach, or not.