real lj idol | week 29 | 942 words
My sister is disappearing.
This is something I've never written about, and I rarely talk about it in real life. Some things are so heartbreaking and hopeless that all you can do is deny them until even that choice is gone.
My oldest sister has Huntington's disease. This genetic disorder is also known as Huntington's chorea, a label which comes from the spastic movements it causes and which increase over time. More is known about it now than used to be, but none of the new information is good. The Mayo Clinic website describes it as a disease
"…that causes the progressive breakdown (degeneration) of nerve cells in the brain. Huntington's disease has a broad impact on a person's functional abilities and usually results in movement, thinking (cognitive) and psychiatric disorders."
My father's first wife had Huntington's, so we knew there was chance that my three older siblings might get it. We'd hoped it wouldn't happen, even as my older sister became irritable and agoraphobic (and later, paranoid). When her body started to become jerky and unsteady, we knew that hope was gone.
When you're at risk for having a disease like this, you're faced with the question of whether to find out if you have it. With Huntington's, if you carry the gene, you'll develop the disease. But there's no cure for it. Would you want to live your life with hope, or with certain knowledge of just how bad it's going to get?
My oldest sister was tested once she developed strong symptoms, so that those could be better treated. I don't know if my brother was ever tested; he shows no signs of the disease, and should have symptoms by now if he were going to get it. My next-oldest sister chose not to be tested, and I understand her choice completely. Knowing won't help anything, but the results could overshadow the too-short life you might have left.
We didn't expect the disease to change my sister's personality so much. She got very unpredictable, very angry at her husband, and sometimes irrational. She cut off all relations with me about sixteen years ago, when she started to imagine that my husband didn't like her. I didn't know her well growing up (she's fifteen years older), and we've lived in different states for about thirty years now. So I didn't see most of the progression that led to her being put in a nursing home about four years ago, after falsely calling the police on her husband and driving off to another town when she probably should no longer have been allowed behind the wheel.
Nobody told us that one of the first things Huntington's would do was take away the person she used to be.
For unknown but fortunate reasons, she unexpectedly reconciled with me a couple of years before that incident. She met my children for the first and only time, then; I can't say why, but with all the pain her estrangement brought, the fact that she kept it up after my children were born and was never interested in them was the thing that hurt the most.
I believe she was fifty-eight when that crisis episode happened. I know her physical limitations had gotten much worse before that, and I can't guess how her husband managed. She was put in the hospital, and they stabilized her mood enough that she was able to see she needed to make the care transition to assisted living.
I can't imagine the bravery and loneliness involved in making that decision, knowing that it was a one-way trip to a place where no one ever wants to be.
When she first got there, she was able to go for walks inside the buildings and on the grounds. She is no longer steady enough to move without a walker. She lives in a care-facility in an isolated part of Idaho, and her world is still getting smaller all the time.
I have spoken to her on the phone a few times, usually on holidays. It's hard. We don't really know each other well, and never did. But more than that, her condition limits her to small talk. I think there is only so much her mind can carry anymore—a few memories, social pleasantries, and things in the present. It is a blessing that she has somehow arrived at a state of contentment. This would be an unrelenting hell for her if she had not.
I know I need to visit her. The logistics and distance are as challenging as wondering what we'd say to each other. It would be best to go on a weekend when her husband is also there. He knows how much she can manage, and more than anyone, he knows how to please her.
She's losing ground more quickly, I'm told, which is one of the things I try not to think about. Like other degenerative diseases, this represents the body's ultimate betrayal. Her ability to feed herself, to escape the prison of her room or bed, will also someday fade away.
Her husband remains steadfast and loving, and her remote facility was chosen not for convenience but for the quality of care. It's unbelievably sad to know that this is the best that's available to her, and that it still can't save her or make any of this easier to bear.
She had to give up riding horses more than a decade ago, and the little freedom left to her continues to slip away.
My sister is disappearing, from the world and from herself. Now you know exactly why I try to pretend it isn't true.