Until 2004, I was an independent and active woman -- a former airline sales exec and then a high school educator. Then my body kept betraying me. I was finally diagnosed with ALS/Lou Gehrig's Disease -- confined to a wheelchair and unable to speak. With life at a slower pace, I learned to live a more conscious and mindful life -- buying, eating and other choices. I listen instead of talking, and I observe instead of running and rushing.
Wednesday, November 14, 2007
RIP Roberto, You're So Vain (You Probably Think This Blog Is About You)
We lost Roberto this morning. He had been intubated and it was time to remove the tube, so he chose not to go on mechanical ventilation. The choice of whether or not to have a tracheotomy and live with mechanical ventilation is the decision ALS patients all have to make well before it becomes an emergency issue. I will really miss Roberto. He and his sisters were a big comfort to me. His sister Rachel was his main caregiver until a few months ago when he got home care through hospice. Rachel and Roberto’s other sister Ivette regularly attended both of my monthly support groups. I hope I still get to see them. I am waiting to find out when and where the wake/funeral is.
I had a contractor here yesterday. I liked him and I was excited about having him do the work. But this morning he emailed me, and I realized that he wasn’t planning to take down the wall going into the bathroom, and I need that down so I can get on the other side of the pipe to reach the toilet, and so I can have better access to the refrigerator. Suddenly I’m frustrated again. The contractor who was supposed to call me on Monday, finally called tonight. He’s coming Saturday for an estimate. When it rains, it pours. I just can’t wait to get a little dignity back, with a shower, a shampoo, and even a little food prep. Basic stuff.
I am just so tired of getting emails where people judge me because I write about the emotions that go with this disease. Just because I mourn the things I have lost, it doesn’t mean that I don’t appreciate what I have. When I say that I feel lonely and isolated, it doesn’t mean that everybody needs to send me emails about how they are thinking of me and praying for me. I don’t need to be told that I sound too angry and the anger and frustration may not make for a pleasant read. Nobody twists their arms to read this. They can choose not to. I KNOW there are people worse off than I, children with cancer, people dying. Because I mourn the ability to get in my car and drive, or to talk on the phone, it doesn’t mean that I a not thankful that I can use my hands, for now anyway. I don’t know why everybody thinks I am talking about THEM. “I know you were talking about me in your blog when you said nobody comes to visit. You made me look bad…….etc etc” Feelings are feelings, ALS or no ALS. If I’m angry, I am allowing myself to be angry, disappointed, frustrated. It doesn’t mean I am like that all the time. But sitting here with my aide, TV, and laptop in a studio apartment, where I can’t get into my own bathroom and kitchen doesn’t cheer me up either. Andrea Bryant is coming on Saturday, so I’m looking forward to that.
Anyway, I am totally bummed out about Roberto. But, at the same time, I am blessed to have known him. Evidently, he had a lot of friends, who came to visit him until the end. He was always grateful for that. I’m sure I will meet them all at the funeral.
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I rarely comment on your blog
(this is only the 2nd time, I think), although I read all your updates, but I had to respond to this one ... first, I am indeed sorry for the loss of your friend Roberto.
I do not understand why some people seem to need to attack others who simply express their feelings honestly and openly. If they don't like it they don't need to read your blog -- it is THEIR choice to do so. For my part, the fact that you share so openly your feelings helps me to understand what goes on in the minds of our "own" PALS, especially those who cannot communicate as well as you, so we must intuit their feelings.
You feel what you feel, and if that bothers others then they need to deal with themselves and why they cannot accept how you feel.
I am sincerely hoping that the contractor will be able to make the changes in your apartment that will make improvement in your life. My best wishes to you.
thanks, trawna, for your comment, and for being a loyal reader.
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