CHRONIC TONIC posts on Thursdays at 9 p.m. EST. It is a place to share stories, advice, and information and to connect with others with chronic health conditions and those who care for them. Our diarists will report on research, alternative treatments, clinical trials, and health insurance issues through personal stories. You are invited to share in comments (and note if you'd like to be a future diarist).
Tonight's diary by: anonymous
We didn't get a diarist on health issues to show up, so you're getting the benefit of what's on my mind tonight.
Sorry for the anonymity, friends. It's just that I'm going to express some things I've learned, some feelings, and it's likely that those about whom these feelings are would be hurt to know this is how I feel.
I guess it's actually more complicated than that... for a long stretch, I really tried to communicate about how I was feeling, and I didn't get anywhere. I think what I was wanting was to be seen and heard, but since that didn't come to pass, I didn't get to find out if getting that would fill the void I've been carrying with me for 3/4 of my life or longer.
I guess this story works best by beginning close to this end of it. I moved half way across the country from home in January a few years back. I was very ill. It was very scary. I felt very alone.
I returned 'home' the end of that year, ahead of the holidays, so I could be there for my father's birthday as his odometer changed in mid-December. Being there for his birthday meant that I was NOT there for the holidays, which I would have love to have been, but it seemed to me that coming for the birthday was the right thing to do.
Not sure I'd make that same choice now given what I learned back then, but I likely would not have learned any other way...
So, I hadn't been home in the better part of a year. After all the plans were made, I got a phone call either from my father or my stepmother - maybe it was both. They needed to tell me that my father has Parkinson's disease because it would be clearly evident when I saw him. Apparently, he'd known about the diagnosis since before I left, but they decided to not share that with me. But since I would now be confronted with it visually, they needed to warn me. Or something.
I did not know what to expect. I'd been aware that Dad's cognition had become more challenged, and that his athletic abilities, such as they had been, had substantially eroded.
But this all had the feeling of some kind of line in the sand - some kind of mark that I was not sufficiently intimately connected with him (them) to have been told about what was going on.
His tremors were quite noticeable. His response time to conversation and general ambulation were notably slowed.
I am sorry he is hurting. And I know quite a bit about diminished mental and physical capacity, so on some levels, I feel a sense of compassion for his situation. And then I remember that apparently, he is not interested in my compassion - they only reason I am told of his situation is because I will see it.
So, on the plane as I return from the trip, I realize that my window has closed - that the time to try to find a way into relationship with the daddy I was so in love with as a very small person, the man who walked away before I no longer really needed him there all the time... the time was over to try to heal what had been lost so many years before. All gone.
I suppose that realization helped me fundamentally. As silly as it may seem, the major motivating force in my life has been trying to get back to those moments when I felt loved and whole as a small person with a wonderful daddy.
It was really only a few short years he played the role of 'Daddy' in my life. I remember the fighting between them and how I willed myself away from the discord. I don't remember the time or times when he stormed out and my mother thought he'd taken me with him, only to find me crouched and hiding under furniture many hours later. I was two and a half when my brother was born. By then, my father had started leaving for days or weeks at a time.
We moved as a family when I was six just ahead of first grade. By Christmas, he had moved out and a boyfriend of my mother's would come to stay. I inadvertently discovered that there was no Santa Claus as all the other innocences where smashing at my feet.
He'd moved out. My brother and I would see him on weekends and sometimes stay at his place. We ate at Arby's and McDonalds.
When first grade ended, my mother moved my brother and me 2000 miles away. I saw my father only two times the year I was in second grade. I remember holding my breath so my emotions wouldn't swallow me. A friend of mine in school explained to me that I did not have a father. I, uh, never could get her to understand that just because he didn't live with me didn't mean I didn't have one. But as I write this now, I realize that in many ways, she was more correct than I was. He wasn't there. He didn't see my struggles, he didn't feel them. He didn't encourage me. He didn't help me know that I belong.
My mother likes to be larger than life. She has BIG emotions, and it is important to her that people respond to them in BIG ways. She likes a lot of information all at once, and she often sees things as first black and then white - beautiful and wonderful beyond description and then hideous and unloveable and unworthy. Of course I was those things to her because everything and everyone in her world was part of that for her. Big. Significant. Wonderful-then-horrible. And she screams. Back then, it was a lot. It wasn't, I'm sure, but it felt like always. I was always in trouble for acting like 'Goody-Two Shoes,' trying to get everything right all the time so that the firestorm would not come down upon me. Unless I was in trouble for whatever I'd done wrong. The tantrums always had an arc. They required my contrition and admissions of wrong doing, and especially my being broken somehow. It wasn't enough to say I'd do it differently next time, or to explain what I had been trying to do when I hadn't done whatever it was correctly... I would try to stay calm and together and do whatever was required. But was was required was that I understand exactly how wrong and unworthy I was. I apparently needed to listen to it, again and again, hour after hour, outrage upon outrage at my audacity and outrageousness. Until I had run in every direction I possibly could, offered every explanation or promise I could possibly think up... and finally, in exhaustion and exasperation, I would tumble over the cliff and watch the walls run up over my head, and I would just sob because there was no way for me to negotiate my way out of that storm.
...and then it would get substantially worse. When I would finally tumble, lose control and sob, she would hold me as if to comfort me. But by then, I was so traumatized that all I knew was that it was not ok for me to be feeling whatever I was feeling and that I was not safe.
Somehow, it was what she needed...My losing it would break the spell of her raging, and she imagined herself a comforting and compassionate mother.
I love her, but my earliest memories of her are from recurring nightmares.
So, I never blamed my father for leaving, but I always felt that at some point he would come back for me. Surely, he could not leave his beloved children with a woman who could act like a monster, right?
Always, I imagined ways he might be in my life again, show me the world as he had when I was tiny. I tried to be really, really good. I was patient. And I kept making up ways it might happen.
It never did come to pass, of course, but I developed some habits which protected me then but haven't served me well as an adult. I began living in a future which would never arrive. I didn't understand this, and I did not understand what the difference was between wanting things to be better and being present with things the way they are.
I guess my biggest dream was that I would magically reconnect with him through my children. He was brilliant with me as a toddler, if I gave him a grandchild, perhaps I could see him be that way to a child of mine, and I would be able to absorb what I had missed so devastatingly from my own life when it disappeared.
But it hasn't happened that I have had a child. I've chosen partners badly. I've still been pursuing the fairy tale father I lost so many years ago. Recognizing that pattern hasn't actually helped me to break that pattern. I'm honestly not sure that I can, although I have literally spent decades trying to think and feel and choose my way out of those patterns.
Somehow, I thought, if he could just hear what it was like for me, perhaps that would be enough. Perhaps I would somehow feel more substantial, more real, more like I count and like I belong.
But they said 'no thank you' when I asked to share my experience. They only heard that I wanted to make them wrong. I didn't care so much about rightness or wrongness, I just wanted to feel like I exist. I just wanted to be heard.
The metaphor is likely pretty close to correct. I kept nearly not existing in these spectacularly dramatic and traumatic events bringing me past the brink of life. Three times I was retrieved and brought back. I never really knew quite why.
After one of those times, my father and stepmother actually moved in with my then husband and me for several weeks to help us through the struggle. For a short time, I had a family. I had lost a baby and my husband had lost his mother. But for a time, I felt like I had support - you know, the kind you can count on.
That was a life time ago now. My new marriage lasted a year after that. I've been sorting myself out since, I guess. Probably trying to figure out the lessons of the parts of childhood I didn't actually have.
It's been four years since I realized my time for working things out with my father had expired. Recently, I've noticed that he and I just have different definitions of family. What I see as his image of a father-daughter relationship looks to me like distant cousins who would be happy to know that extended family is doing well, but not interested enough to know more than that.
It felt like more than that when I was small. Until it was gone. I did not find a way to get it back like I was absolutely positive I would some day. Life went on. His days are mostly past. Mine haven't added up to what I thought they would, but they're mine, and I've done ok, given the challenges. It's not anything to write home about, I guess.
But. I. Am. Ok. Maybe healing begins with letting go of what was never really there.