update

ferncohen.com
I had the first “open house” with the new realtor/management company. So far, no firm offers, so I am resigned to being here for a while. In the meantime, I may have to do more to make it all look presentable. Like finally getting rid of the desk, and getting wireless set up here so that I am not confined to this one desk. I

In the effort to make life somewhat tolerable, we have instituted new strategies. First a new morning routine. Now, the night aide wakes me at 6:00am to get me out of bed and into my wheelchair, We hve also raised the bed to make it easier for me to get out of it. Then, slowly and carefully, we get me into the bathroom and, hopefully into the shower. If not, the aide sponges me down outside the shower. At about 6:45 the day aide comes. So for about 15 minutes, I have two aides to get me out of the bathroom, when I am most exhausted.

If I don’t find a buyer for the apartment this fall, I probably won’t find one until spring. So I am operating as if I am staying at least another 6 months. And, most of all, I have to pray that my feet don’t totally give out and/or I don’t become totally bed-bound.

I am also operating on the assumption that I will be alone with myself at least until the spring. There is literally nothing to do in my immediate area, no real parks and certainly no pretty places to sit outside. So I am finding things to occupy my time solitarily. If I am going to be stuck inside I am aiming to write more o my book and scan more photos. I am trying to get through an on-line course in Photoshop Elements, and I am getting totally frustrated!!! I wish I could get myself to a class, but I don’t see that happening.

And IO am conflicted about what world I belong in. My two monthly ALS support groups are my social life, but I also want to go places where I am not just about ALS. My mind and my intellect still need stimulation, and I still appreciate art and beauty.

We lost two people in the ALS community this week. Both people had reached the point where they just couldn’t take it anymore, and refused nutrition. I will miss them both, but I am glad they were able to choose when it was time to go,