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.
Saturday, March 21, 2009
Some Thing That Make Me Sad; Some Things That Make Me Glad
I am very sad about a couple of things this week. First, I am really sad about the death of Natasha Richardson. It was so quick, so senseless, so arbitrary, so unprovoked. It is a reminder, once again, that life is so fragile and so precious. You can be fine one minute, and dead the next. They called it "talk and die" syndrome. One minute you're fine, talking, walking, refusing medical help, and suddenly, [could be a few hours or minutes later], you're vomiting, you have a severe headache, and may even collapse. Very scary, and very sad. The news reports that I heard, said that impact on either side of the head is more dangerous than impact to the front or back of the head. Hitting the side of the head can actually knock the brain around, and cause blood to collect in a hematoma. I thought back to how many times I have fallen, especially in the early stages of my ALS, knocked my head, and felt just fine afterwards. I think we can all look back and recollect an incident like this.
I am also sad that our sensitive and ultra-conscious president found it so easy to make an politically-incorrect comment on the Tonight Show yesterday. He was actually making fun of his bowling, and said it was like the Special Olympics. His staff called the Special Olympics to apologize even before the show aired. We are all so aware of racial and ethnic slurs, but slurs against people with disabilities still roll off our tongues so easily. I am also guilty of blurting out words like "retarded", "lame", and, ironically, "spastic". This is ironic because "spasticity" [stiffness] is my most troubling symptom.
And here's the thing that makes me really sad [and mad too]: after a huge mess last year, where my bills fell behind, through no fault of my own, I have been really on top of things, and my bills have been meticulously up-to-date. But apparently, my fax machine stopped working properly, and the pooled-income trust received faxes from me that came in all black. They knew it was from me, and neglected to contact me to tell me. If I didn't notice that my balances online showed that the bills hadn't been paid two weeks after I faxed hem, I never would have known. When I called to find out why my bills hadn't been paid, and asked why nobody called to tell me there was a problem with my faxes, I got the most ridiculous answer: "We didn't have your number". I found this unacceptable since they have a whole file on me. I had to give them all to a friend to fax from the office, but the phone calls are coming in already, and I'm embarrassed. And the thing is that nobody has the least bit of compassion when I tell them that the bills are paid through a trust. They probably think I am some rich trust-fund baby, when nothing can be further from the truth! So, late fees are coming my way. In order to let the NYSARC trust know how damaging this was, I will have to send a letter, because nobody was willing to call and make the noise over the phone. Needless to say, I had to shell out money for a new fax. Oh well. In the scheme of things, I guess this is a minor rant.
But here's something that I found really sad, and I hope my feedback helped her [she said it did]. I met a woman Tuesday night whose brother has ALS. She's in the city and he is on Long Island. She hasn't seen him in a year. She can get to him-- that's not the problem. He is extremely depressed and stays in bed in the upstairs of his house. His wife is installing a stair lift for him in the hope that he will go downstairs. The sister I met says that when she calls on the phone, they don't want to talk about ALS. So she says that she sees nothing they can talk about, so there is no reason to visit him. I told her that it is probably depressing him further that his own sister will not come to see him, and why do they have to talk about ALS? I reminded her that there is still an intelligent person inside. So she said "well I can't tell him about anybody else's life, because it will upset him by reminding him of what he can't do anymore. I can't talk to him about politics, because none of that is relevant to him anymore. Same with the arts." I suggested they watch TV or a movie. She was concerned that the media was not relevant to him anymore. I told her this saddened me because he is not his disease, he can still live, and be entertained, and laugh. She said I helped her, that she will go see her brother and try to get him out of bed, or at least watching TV, or read to him. I don't know why people think PALS are not people anymore, that the only subject that interests us is our disease. When I see people, aside from explaining a few things they need to know, I don't want to talk about my ALS. And when I don't hear about their lives, it distances me further. I have people I was very close to, that I either never hear from anymore, or if I do, tell me nothing about their lives anymore. Because of this, I don't feel attached to people I felt a closeness to, before ALS. Or maybe it's a way for them to break the attachment, either purposely or subconsciously. I don't know. What I do know is that many people who were a big part of my life, are not in my life anymore. I'm told serious illness can bring them closer or further apart. I'm happy to say that, in most cases I know, it brings people closer.
I am happy that my friend Andrea is coming today, and I can ask her to help me with some things that have been hanging -- a new rug for my bunny's cage, a package that has to be sent from the post office, pictures to be hung, etc. And Judy is coming for our weekly Starbucks outing. I am also happy about my physical therapy, which started yesterday as an outpatient. The PT is trying to strengthen my stomach, and loosen up my legs. So far, it's the closest thing to a gym workout I can have. I hope to burn some calories.
Posted by Fern Ellen Cohen at 12:06 PM
Labels: ALS, disabilities, disability, disabled, disease, Lou_Gehrig's_Disease, Lougehrigsdisease, MND, motorneurondisease, natasharichardson, neurological, neuromuscular, obama, physicaltherapy
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