I feel like I owe the very few readers of this blog an apology. I have always promised to share the full scope of my battle with Parkinson’s. The very purpose of this project is to remind me to confront my challenges in such a way that I can serve as an example to those who may have given in to despair. It has been over a month since I wrote anything. In that time I have been tested like no other time in my life, and I have finally found the bitter end of my endurance. I’m going to attempt to share this part of my life so you might gain from it the way that I have. This may be the defining lesson of my life.
My father was Harry Lee Robinson, and early on the morning of April 15th, as his oldest son, the decision fell to me to end his suffering and remove the machine that was replacing his exhausted lungs and heart. I had to do this despite the fact that in his last lucid conversation with me he told me that he still wanted to fight. The story of my Dad’s battle began just before Christmas of 1989. A routine trip to the hospital to check up on a bruise on his leg would turn out to be Leukemia. While his recovery at Stanford was a monumental success, the damage that was done to his body would change him forever….and yet it would also change him not at all. His body was broken. Bone marrow transplant. Radiation. Spinal taps. Of the half dozen or so drugs they used for his chemotherapy, three are no longer used because they are so damaging to the patient. This process took almost a year. While he was there, the nurses and staff would always hang out in his room because he always remained cheerful. They would take him around to see the other patients so he could brighten their day. He was the 100th bone marrow transplant at Stanford and to this day is still one of their greatest success stories. If that was the end of the story we could all part with a smile on our faces. Life, however, was not through with my Dad.
His final 26 years would see him and his wife open their home to countless endangered kids and adopt six of them. Truthfully, they adopted every one that they could and there were many times that they cried when they had to let go of toddlers they had raised from birth. They were foster parents of the year once. In the long run, they gave so much that they broke. There was a divorce. There was a fire. Though his family and home were gone that smile, that light never left his face. It was around this time that I started to let some distance gather between us. It was simply too painful to watch. To phrase it honestly, I wasn’t strong enough to watch him suffer. I became frustrated with him because when he would lose something he wouldn’t fight the way that I thought he should. He would turn the other cheek and put other people before himself. He would continue living, loving and surviving through major bypass surgery and kidney failure as long-delayed side effects of his victory over Leukemia. Though his brother (who had donated his bone marrow in ’89) and I offered him kidneys he never pursued another transplant, choosing instead to spend his last years getting dialysis treatments for hours a day sometimes up to five times a week.
On his last night with us his 6 adopted children would travel to Sutter-Roseville Hospital to meet my brother Colby, my daughters and I, his brother Chuck and his two loving ex-wives to gather together and guide him out of this world as he guided us in. My sister Desiree drove alone across three states from Washington to Northern California and it was her that I almost failed first. Thinking only of my Dad, I wanted to end his suffering and hope that she would make it in time. My other sisters and my Step-Mom helped me find the wisdom to wait. Of course my Dad would want to wait, no matter what he was going through he would’ve endured years of it to wait for any of us. Hours later, my eclectic, fun and beautiful family crowded into his room. We played his music, “Brown-Eyed Girl” by Van Morrison, “Hotel California” and some Doobie Brothers. I didn’t mention that my dad was a rock star. One of his early bands opened for Janis Joplin and he would eventually be inducted into our local music hall of fame. In his role as Judas in his church musical his rock and roll scream at the end of his song would always make babies in the audience cry. The last music he heard was the sound of his children’s laughter as we told stories about growing up happy. The laughter was getting a bit loud for an ICU at 3 a.m. and I was about to reign everyone in as the supposedly responsible one. I looked down and I knew he had left us.
On that night I was strong. In the days that followed I wasn’t. Phone calls for arrangements to be made came and I screened them. My strength was spent and I was haunting myself with the last conversation we had. I punished myself for every time I found something to do other than take him out to lunch. His funeral was yesterday, and my words failed me. As the oldest, I was supposed to be the rock that they leaned on that day but I had found the end of my strength. I moved to a side pew to shed my tears alone. My brothers and sisters wouldn’t let me. They followed and they outflanked me. They held me up.
The lesson is this. No one punishes as harshly as we punish ourselves. Life is struggle and hardship highlighted by bright sparks of happiness. Don’t waste your time seeking pain, it doesn’t need your help to find its way. The power to shift your perspective is the key to happiness. That is my Dad’s last gift to me. If he remained a bright light through everything then we can too. Yes my father and I were different. Where he had the grace to turn the cheek, I ball my fist. Yet we are also the same. He has shown me the art of graceful endurance. I always knew my Dad was a good man. Today I know he was a great man.
He and I have been set on a darker path than some, but not as dark as others. If you’re lost you can follow me, I don’t exactly know the way, but I’ve had an amazing guide. He’s gone ahead now, but his light still shines on the path. I should be strong enough to make it, after all, I am my father’s son.
REST EASY DAD, I LOVE YOU.