Thank you for continuing to read and “hear” my father’s story. As most would guess and some have experienced, a major illness within a family typically qualifies as “traumatic.” Traumatic basically means there has been a threat to one’s life and one’s sense of safety and security. There is a sense of doom and gloom, of the unknown and the yet to be seen, but also the “I can’t believe what I’m seeing” aspect. There is an astonishment of the major changes that occur to the person with the disease. Thoughts like: “Their functioning is so deteriorated, will they be okay? Will they ever be the same again? Will they suffer a lot?” Within the patient, there is also: “I can’t believe what I’m feeling, this is very different” and “Who am I with this disease? I am not the same.” And for both the patient and the family: “HOW and WHY did this happen and what will happen next?” In terms of trauma, was having Parkinson’s Disease a threat to my father’s life? Yes, there was no cure and it’s a progressively debilititing disease. Was it a threat to his sense of safety and security? Yes. He could no longer rely on himself to protect himself from harm; he was also used to protecting others from harm and that was no longer possible the way it used to be. Try wrapping your head around that reality when your career and livelihood are made up of protection roles, not to mention your sense of self as a protector of your family, which he took very seriously. Was my father’s illness a threat to me? Yes, not physically, but in the sense of it meaning there was a threat to someone of major significance in my life, someone whose presence and well-being afforded me a sense of safety and security, even as an adult. My father was forced to look at himself differently, and I was too. And that was just plain sad and depressing for both of us. He told me tearfully one day, he couldn’t believe his “babies” had to help him get out of bed.
But then, about a year into the journey, a glimmer of hope appeared: his neurologist at UC told him about an experimental brain surgery that had gained some traction because Michael J. Fox had had it and it had been successful. Mom and dad researched the information available on it and decided it was worth trying. Mom then had to fight the Insurance company for approval. Thankfully, she won that battle. In August 1999, my dad underwent deep brain stimulation surgery. The night before, we had a head shaving party for him and my husband, who had been balding since age 17 and sported a shaved head most of the time, did the honors. All of us were there to support dad, and I stayed for the surgery and days following. My two sisters closest in age to me lived out of state, and the three younger ones were still at home and had school obligations, plus they weren’t adults yet, this was not for them to do. I’ll never forget seeing him in the brain surgery “gear” that looked like a cage around his head with places where it was tightened with screws. To me, it looked like a crown of thorns, and I thought that was a pretty good representation of the suffering endured thus far, and the suffering I sensed would be endured before he got all the way through this chapter of his life. I shook the thought away and kissed him on the cheek and squeezed his hand before he went back. Something AMAZING happened that day! Surgery itself was successful and the intervention was wildly successful beyond what any of us imagined. Our dad started “coming back” and he was able to DANCE at my sister Sandi’s wedding in late September! He wanted to buy the shoes he rented with his tux for her wedding, he called them “magical shoes.” He hadn’t danced in 2 years and he was a great dancer, having taken ballroom dancing as a teen/young man. It was a glorious and hopeful time. We celebrated his increase in functioning with all of our family and friends. I celebrated it daily in my head. It went on for a good two years.
A pause here for one of dad’s favorite songs from his favorite movie, “Rocky.” It was his personal anthem and it became our anthem for his journey: “Eye of the Tiger” by Survivor and what a survivor he was!
The body and brain can do some amazing things, but there’s a bit of a time limit to all things. We are, in fact, only human. The decline started again. He was approved for surgery again, to have the deep brain stimulation done on the other side of his brain, in the hopes of a similar outcome. It didn’t take. It’s unclear why, but it was for sure a dashing of hope for all of us. But we moved on and forward. Mom and dad had joined an extremely supportive Parkinson’s Diesase group and were finding their people to talk with and share with. They could be spokespeople for the surgery, having been through it, and there’s nothing my mom likes more than helping others in any way she can. So there was “new life” there, and of course, we all continued on with our lives, reaching milestones such as graduations from high school, college, grad school, medical school, and the first grandbaby was brought into the family in early 2002: my daughter, Madilyn. We were living in Arizona at the time and came home in late 2002 as things worsened for dad. I didn’t want to raise my children without their grandparents anyway, nor did my husband. All the sisters who were living away at that time started making their way back home. My dad was still talking and able to be playful when Madilyn was an infant and into her first couple of years. The joy my dad had holding and interacting with her was priceless. We had made the right decision for sure. My older sister and her husband moved back at the same time we did with their daughter, who is just 6 months younger than mine. And my third sister soon got herself transferred to the closest air force base in Dayton, OH. No one was more than 2 1/2 hours away and we had family celebrations quite often, for holidays, graduations, weddings, and all the birthdays in our extended, growing family. Having everyone together was dad’s favorite thing. By 2008, there were six grandchildren (4 girls and 2 boys) and five of the six of us were married. The babies’ presence always brigtened up dad and we brought them around as often as we could. We had all adjusted to the “new normal,” as much as anyone can. Dad was losing more capabilities and he and mom were living alone, empty-nesting for the past few years, as my youngest sister had been away at college more than she was at home. Mom went to work every day and dad called her if he needed anything. She worked less than a mile away and could be home quickly. Then in March 2008, another major milestone in dad’s illness, leading to another major change in his life (and ours) occurred. He was 60 going on 61…
TO BE CONTINUED
Until then, May Your Day Be Sprinkled with HOPE,
Melissa Adamchik, Daughter of William Wambaugh: U.S. Army Veteran, Retired IRS Special Agent, & “Pa” to his beloved grandchildren