From Person To Patient

There are times, with this disease, where I want to just scream, times when I want to just yell and stamp my feet in a child's temper tantrum. But I can't, not least because my legs no longer move. In reality those times of temper are often tempered by the realization that getting mad, shouting, crying, screaming, and whatever else I might do will help nothing, change nothing. It's simply an expulsion of precious energy for little or no good return, not even catharsis.

Last night, as I made my way to bed, I had one of those moments, a slice of time where I was plain and simply angry about my situation. Internally I demanded answers to stupid questions. "Why me? What did I ever do to deserve this? What did I do that was so wrong for God to punish me this way?" Of course I lack the energy to scream these pronouncements out loud, and the rending of cloth is far beyond my level of strength.

It's hard not to have these times with this disease, these moments when I am overwhelmed by what is gone from my life, what I have lost, that which I can no longer do. It's not hard at all, to roll into a self-pity party and let it wash over me like ocean waves. All I have to do is think about where I was a few years ago, and where I am now.

Usually these moments are triggered by an event. Yesterday it was a visit with the Home Care Nurse, and two discussions. The first was what I would do when Katherine goes out of town later this month on her visit to Hong Kong. Ultimately we decided I needed more home care, and arranged for someone to come in, make sure I was up, and make me some breakfast on those weekdays when I don't have exercises. So while Katherine is travelling, I will have a Home Care Aide in on Tuesday and Thursday mornings.

The other discussion was somewhat more challenging. We discussed the possibilities of me entering a long term care facility, or perhaps an assisted living facility. Lots of other people think this is a good idea; not me. While the option of going into a facility would likely be financially better for me, I would lose so much of what I love about my life. No parties, no winemaking, far less social life. I would move from being a person to a patient.

I'm told that there might be ways to make an assisted living facility work for me. I hate the idea; I want to die here in my apartment, here at home. The assisted living facility might actually improve my quality of life, but it would destroy my will to live. On the other hand, I would be a fool if I didn't investigate, if I didn't get all the information. Who knows? I might be wrong. But I don't like the idea. It's just another thing this disease will steal from me, my independent living.