Dad,
I just finished rereading Sparkles for the first time in decades and find myself thinking about your reasons for writing it. The obvious one was your strong belief that Mom had MCS, not a mental illness, and your desire to “prove” this. You were full of rage at the medical establishment, which you believed had repeatedly misdiagnosed and mistreated Mom, making her symptoms worse and, at times, endangering her life. You were especially angry at the many medical practitioners who concluded that she was mentally ill, instead of working to find a different explanation for her suffering. You wanted the world to know about this outrageous treatment, both in hopes of changing mainstream medicine and also of sparing other couples the anguish you and Mom experienced.
This would be reason enough to write a book. But I think you also needed some outlet for your existential struggle. Why did this happen? Why did it happen to your wife? Why did it happen to you? How did it change your lives, your marriage? And, thinking even more globally, what is the meaning of illness? You flatly rejected the idea of illness as punishment for wrongdoing, or even illness as part of a master plan, invisible and incomprehensible to humans, but unfolding under the wise guidance of some distant god. You concluded that illness, like other misfortunes, is a purely random, purely material, event. It is not part of some “pattern” in the universe. Things do not happen for a reason – things just happen. They have no spiritual significance. They just are. I’m reminded of how often we talked about these kinds of ideas in the letters we exchanged when I was in college.
When you finished your first draft of Sparkles, you asked me to edit it. I was working as a technical writer at the time, and I felt proud that you respected my skills enough to ask me to help you. But when I read your story, I was disgusted with it because there were so few mentions of us kids. Once again, we were left out of the circle, placed firmly on the outside of your wall. I questioned you about this and you were defensive – you were trying to tell the story of you and Mom. You didn’t see why your kids needed to be part of that story.
When the book was finished and I opened the copy you gave me, I found a handwritten dedication on the title page:
Dearest Karen,
Ma and I pray that somehow, somewhere, somebody will read our story and save a daughter the pain you experienced.
Love, Dad
At that time, I couldn’t open my heart to the message you were trying to convey. I couldn’t bring myself to read the book again, even though I knew you had made some changes. Reading it now, I see how hard you were trying to touch me. And I see that you responded to my criticism of leaving out your kids in the early draft. We’re everywhere in this final version.
You’re quite honest about the fact that you and Mom drew together to fight the illness and shut us kids out. You admit that you didn’t think at all about how much that might hurt us. It was you and Mom against the world, just like when you were young, and your own children were part of the world, not part of you.
You’re also quite honest about the fact that you blamed us kids for adding to your load without recognizing what you were adding to ours – not giving us any help or understanding to deal with the changes in Mom or with other problems in our lives.
You write about being especially angry with me for not helping you. I guess in your mind I was an adult – I had left home for college, I was “launched” – so I should have been able to shoulder some of your load. But the truth is, I was still a teenager, devastated by the loss of my relationship with Mom, and barely able to take care of myself. Just as you were angry with me for not helping you, I was angry with you for not helping me. And so our estrangement began.
Whether I like it or not, there are so many ways in which I am your daughter. One of those ways is my need to write about my life. In the same way that you wrote Sparkles in order to tell your story and perhaps come to a deeper understanding of it, so I’ve written dozens of memoir pieces, out of the same need to tell my story and, despite the fact that you can’t read them, to explain myself to you, as I think you were trying to explain yourself to me.
Karen
* a book about my mother’s illness that my father wrote and self-published
As a reader over time of these memoir stories about your family and your relationship with your father, I have a sense of the pieces of the kaleidoscope puzzle falling into a new and harmonious balance, here. Not perfect or complete, but harmonious.
That’s lovely. I have this sense also. Writing these letters to my father has shown me that, despite how much I’m like him, I often misunderstood him.