Dealing With the Devil


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.

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12 thoughts on “Dealing With the Devil

  1. Having just lost my father to pancreatic cancer last month, I fully understand and relate to the anger and frustration. His mental issues centered on his obsessiveness to minute details..what would he wear tomorrow, can you straighten the collar on the jacket on the chair across the room. And he was very hard of hearing so everything said to him needed to be repeated twice at the minimum. Sometimes you think he was not listening on purpose, because when a doctor or nurse would come in, he would hear them even if they spoke barely above a whisper. That being said, with all the stress and annoyances, I know we did all we could for him. You will most certainly feel the same way. Later on, that will be all that matters.. Good luck in your journey.

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    • I truly hope so. We cared for my father here as he was dying, and he exhibited some of those same issues. For him, I know we did the best we could, but it was so fast – diagnosis to death was just a few months. I hope I can continue to do well by Mom. Thanks for the encouragement.

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  2. My deepest sympathy, Lynnette. It is hard to imagine being in your position; my mother is deep in vascular dementia, so the depression, crying and rage are familiar, but it is not tied to an inherited gene, as yet.

    I suspect respite care is not an option, as they might say you have most of the day as respite (missing the point entirely), but perhaps if you could find a way to cut down on the daily visits, without feeling unutterably guilty, it might be something to consider. Your son needs you to be as whole as you can be. Just my two cents, and worth every bit of it.

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    • You’re right, Elizabeth, the point IS often missed, since I have most of the day as ‘respite’ – worse I think, because I work at home. To many, it seems this translates into frolicking about and working when I wish. The guilt is terrible though, but I’m trying so hard to give my son all that he needs. Already he’s showing the effects of the situation with my parents – since my father’s death, he has become obsessed with cemeteries and wants to visit ALL of them, so that someone, somewhere remembers all of those people. Heartbreaking.

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  3. Wow, raw and visceral. Hits me where it hurts. My mother is losing her mind. I tell people I’m off to visit my parents and they usually reply with something about how much they miss their mum or dad, or similar, and how lucky I am. While I’m quailing inside with dread and cold fear, wondering what she’s going to be like this time, what’s she going to put me through, how much is she going to hurt me? How bad is it going to be? I really feel for you. I hope things improve, and your family steps forward to share the load.

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    • Thank you so much for the good wishes. And I’m so sorry that you’re dealing with that dread and knowledge firsthand. It’s a terrible place to be in that only a handful of people can really understand. I wish the best for you and your Mom.

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  4. I was all set to say, “aah, the old some days I’m mad at her,” card. I’m glad my heart overrode my cynicism. I so deeply appreciate your tearing that honesty out by its ugly roots. You know you’re mad at her, and you know why the depth of your anger is so unhinging. Your small son may be the bearer of the pain you are experiencing now. In the depths of despair for your mother’s plight, in the wish and in the pleas to a God that she holds dear, but you may have doubts about lie the dread of what may be coming for your son. I will get down on my knees and pray to my God, my kitty, my muse, whatever I hold dear, to wish this not be so. I will demand this not be so for you and yours; you’ve touched me that deeply. I weep for you, your mother, your father, your dear son, and you, my brave, gallant lady. My heart goes out to you, Lynnette. Mary

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    • Unhinged. That’s a great word for it. And it is indeed my son that makes this whole thing as piercing as it is. I can shoulder almost anything without caving, but this fear for him is killing me. I appreciate your good thoughts and prayers, whomever they’re toward, and appreciate your words, Mary.

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  5. Lynette, I related to this on so many levels. I often feel like my gene pool is a cesspool too. It sucks, and there’s no one to yell at.

    I’m sure you’ve already tried all my usual resources: coffee, wine, therapy, hugs… Just in case you’ve missed any of those, I’m sending you a virtual hug.

    It’s a HUGE one…did you feel it?

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  6. xxoox I’m so sorry that you had to go through all the things you did but i’m so happy to have gotten to know you now…thank you for sharing all the things that you have gone through…

    PS. Nominating you for the Liebster Award more details on my page xoxo Congratulations sweetie!

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