Six years ago this October, my dad was found unconscious one evening after my mom returned from work. We had no idea what happened or how long he had been down. A few frantic 911 and family calls later, the ER determined it was a massive right brain stroke. He had a Traumatic Brain Injury (TBI) and went into immediate brain surgery to remove a piece of his skull to lessen the pressure on his brain. On a scale of 1 to 10, with 10 being the most critical, he was a 10. The doctors weren’t very hopeful. I remember being surprised by the absolute bluntness of the moment, but their bedside manner was the least of our worries.
There was some brain activity.
Tiny blips on the radar, but no other signs of life. We had no idea what would come of it. After 10 days in a coma, he opened his eyes. It took many weeks for patterns to begin to emerge. He had complete paralysis on his right side, and his system basically did a hard reset. In essence, he was a newborn, but without even the most basic instincts. He relied on tubes and could not breathe, swallow, eat, drink, talk – nothing. His body and brain wanted to hibernate, rather than function as they had in the past or learn new things.
After a month or so, he graduated from the ICU to a regular room. He started PT, OT, and speech therapy. It was slow and painful to watch. Minutes and hours felt like days. But our role was easy compared to his. We had no idea if he could hear and understand us, or just hear us. He wasn’t focusing on anyone. Could he see us or read our lips? Did he even know who we were? It took nine full months before anything even remotely resembled a routine. Beeping machinery galore, we would strap him up and head to therapy day in and day out. Slowly but surely, a functioning brain and body started to emerge and we gained some hope.
Our New Normal
My father slowly progressed to remembering his and our names, who was who, what day or year it was, how old he was, where he used to live, and family members we hadn’t seen in a while. He developed aphasia, where you say the wrong word on accident. Such irrelevant details to a massively injured brain, aren’t they? At the time, these moments bounced between overwhelming and comical. Funny responses and misremembering if I was his mom, daughter, or wife. Oh, but he definitely remembered all of his female nurses! Still makes me laugh to this day how much he loved his daily routine “with the ladies.”
Even slower still, he progressed to moving limbs and flexing muscles. Months down the line, he was sitting with assistance, then actually holding himself up, and then walking. Sprinkled somewhere throughout the next nine months were the second, third, and fourth brain surgeries to replace the piece of his scalp that was initially removed, and to install a shunt into his scalp for drainage of fluid into his abdomen so it did not press on his brain and cause further damage. At about 18 months post-stroke, we didn’t know where one phase ended and the next began. We just knew that this was the process you go through.
I remember when he mastered standing! The smiles! The laughs! He took one step and it wiped him out. His sense of accomplishment brought tears to everyone’s eyes. He slowly graduated to walking with the assistance of walkers, gait belts, and nurses on either side holding him up. He got to the point of fully walking carefully with tiny steps and shuffles at a time. Again, months down the road from the previous milestone.
The Million Dollar Man
Among these huge milestones were the fifth and sixth brain surgeries to remove fluid build-up from the brain, shunt re-installations, and upgrades to the next best self-regulating model. We joked that he was a million dollar man with all these new and improved parts. I’d say he recovered 60 – 70% of his physical abilities, and that honestly felt like a miracle. Life was different. A new normal. Dare I say we found a groove and even enjoyed ourselves again. Family dinners, TV shows, and silly movies on repeat. Jokes and old memories resurfacing. Life outside the house and hospital.
Then, after a final surgery, a simple error was made. One of his meds was missed. We believe he had multiple mini-seizures on and off for three days, which is our best guess. His system was entirely wiped out. All of that progress, gone.
My father was gone. Again.
He is no longer able to achieve even that 60 – 70% back. I was so mad, so angry that everything he had could be taken away – again – in an instant. But, I have also had many friends whose family members have had strokes during these same years, and very few of them made it through the first days or weeks after. We each have our own struggles. No stroke is the same, no story the same, and no potential path to recovery the same. And death does not discriminate.
I knew every detail to the letter back then, but it’s so hard to remember it all now. I think that is for the best most days. My brain protecting me, perhaps? Time does heal all wounds, or at least smooth out the edges a little. Today he is still eating, drinking, and talking a bit, but he’s no longer walking. Paralysis has worn off to a degree, but the muscle function just isn’t there anymore.
He is my father, and I love him without question. Yet he is a vastly different man.
His life is much simpler on a mental level, yet drastically difficult on a physical one. We cannot have conversations anymore. None of the details we all spend our lives worrying about are of any concern to him. And for that, I am grateful. There’s something soothing about that in a way.
I remember being blindsided by complete overwhelm when I realized that my father is still here, but he’s no longer my father. No father-daughter talks, no personality I loved, no person we had all made a lifetime of memories with. When I got engaged and began wedding planning, it dawned on me. He’s here, but he cannot walk me down the aisle. Would he ever be able to hold my child if I have one? This caused what I can only describe as delayed grief – mourning for someone who is gone, yet they are still here. Mourning for what once was, but can no longer be. But yes, he was at my wedding. Cursing at whoever he damn well pleased and semi-dancing from the wheelchair. No, he cannot hold my son and he never will be able to. But he loves on him just the same, and my son loves being a “big helper” to his Pop.
You will never read this. You can’t. But I love you Dad.
The brain is such an amazing vessel. It is estimated we know only about 10% of what it is capable of. There are so many nuances and intricacies, it is truly awe-inspiring. If you are into Ted Talks you have to check out My Stroke of Insight by Doctor Jill Bolte Taylor. She is the only medical professional to have had a stroke, survive, fully recover, and be able to explain what she experienced to the medical community. I feel lucky to have this one tiny glimpse into what my father may have felt or experienced, and that gives me some sort of closure in a way. We can all benefit so much from what she’s able to teach us, and hopefully this can lead to a future breakthrough in research or medicine.
Warning Signs of Stroke – Think F.A.S.T.
Do you know the warning signs of a stroke? Here is a little acronym to help you remember what to look for and what to do:
F.A.S.T.
FACE: Ask the person to smile. Does one side of the face droop?
ARMS: Ask the person to raise both arms. Does one arm drift downward?
SPEECH: Ask the person to repeat a simple phrase. Is their speech slurred or strange?
TIME: If you observe any of these signs, call 9-1-1 immediately.If you’d like to learn more, national resources and information are available here at the National Stroke Association’s website and here the American Heart/Stroke Association.