I haven’t had a medical procedure performed in 22 years. This is a significant fact because by now I should be nearly bionic. I should have had both knees replaced, a shoulder surgery, a hip replacement and a replacement to a previous hip replacement.
One would think, based on the list, that I had some age on me. But I haven’t even hit middle age, let alone old age. That first hip replacement was when I was only 23.
Bad genes. Seriously bad genes. Studied-in-a-university-setting level unusual, to boot. Such a breath-taking lottery to win. Rare disease. And our family got two.
The one I have is a form of polyarticualted arthritis. Like arthritis on steroids, coupled with extremely loose connective tissue. When I was a kid I used to dislocate my kneecaps just to gross people out. It didn’t hurt, but the faces were priceless.
What did hurt was falling and smashing into the ground repeatedly when those kneecaps spontaneously dislocated while doing such normal things as ballet class, or T-ball. Or getting off the bus.
By the time I was 8, I’d already had my first of 5 knee surgeries on my right knee, and ballet and T-ball were spectator sports.
And I so vividly remember my mother wishing it all away. I think all mothers do that – wish they could take the pain of their children into themselves, to spare the little creatures they made and love above all else any pain.
I fear that my son has these genes, though he has shown no sign of it yet. I expected to be bartering with the universe, but I didn’t expect it so soon.
I thought I had more time.
And I expected my deal to be struck for him.
I got these genes from my Mom. It is her family that bears them, and I remember from a child’s perspective, how limited she was in what she could do with me.
I gauge the speed of my own decline against those distorted memories. So distinct that I recall her falling once when I was twelve – pulled to the ground by an over-exuberant dog – and the irrational fear that she would die before I could get help.
But Mom got hit a second time by the rare disease bus. Diagnosed not long ago with Progressive Supranuclear Palsy, she has been in a steady decline, accelerated by a rampant depression that was magnified by the unexpected and rapid decline of my father’s health.
She’s like a tiny ant caught in the nursing home shoe box, under the white-hot beam of God’s magnifying glass.
And it’s breaking my heart.
Through all of this, her faith in God has never wavered, though her faith in herself is in pieces.
To see her become so unsure, so distraught and apologetic is knife sharp, both teaching me what not to do with my son, and making me cry in anger because I can’t help her.
Some days I’m mad at the universe. Some days I’m mad at science. Some days I’m mad at myself. Some days I’m mad at the family and friends that don’t go visit her because they are too busy, or they don’t like nursing homes.
Some days I’m mad at her.
Those ones are the worst. The days I have to tell my son I can’t take him to the playground on my one day off, because we have to go see Grammie, and all she does is cry, which makes him cry.
The days I have to yell to make her stop crying, to stop raging, to stop apologizing.
I know she can’t help it. And the apologies kill me. The crying is part of the disease. So are the random outbursts of anger. I know it’s not her fault, but I also know that when she starts raging, I have to take my son and go. Because he doesn’t understand.
Most of the family hasn’t even seen her rage. They see the more common crying, and most don’t equate it with the disease. As the only one that talks to her daily, I get it all.
Some of my anger toward friends and family is selfish. I’m just so tired. So overwhelmed. I wish someone else would go see her, or call her so I don’t have to do it every day. I just want a day to just be.
And through it all, I keep a resentful eye on science. We are so close to solving so many problems. If we had the money of A-Rod or Nick Nolte maybe we could have gone to Germany to try the Regenokine Therapy.
The people who object to all forms of stem-cell research make me want to scream.
And even if Science wins in the near future, it will be too late for Mom. Her symptoms have progressed too far, she is too rigid, too deconditioned.
But maybe they’ll win in time for me. So my son doesn’t have to sit where I’m sitting, so my own grandchildren aren’t confused and scared by my outbursts.
