First, let me say that I lost a beloved family member this week. My aunt, Ruth Pasternack, was 89 and had numerous health problems in the last few years, but about 40 years ago, she survived a cerebral hemorrhage, so I always thought of her as indestructible. She was my father's sister and very close to him. Today, my dad said he is very sad because she was the only person he could confide in. He will miss his oldest sister [he has four, and he is not as close to the other three].
Machines....oy, we can't live with them, and we can't live without them. Kind of like men.....or women, depending on your desires. Except I can live without a man; I can't live without my machines. My lifeline -- my internet -- totally went away two weeks ago. The closest appointment they had was a whole week later. Don't tell Time Warner, but I found a way to get on some of my neighbors' networks, for a few minutes at a time, anyway. Finally a week later, the cable guy came, made a "minor adjustment" to my router, and I'm fine. I don't think anyone particularly missed me and that was a bit disturbing. But, I'm back in business. My cable remote had also decided to die last week, and Time Warner promised to send one in the mail. But we asked the cable guy when he came, if there was anything he could do, and luckily he was able to bring me a brand-new replacement from his truck. Now I have issues with my bi-pap ventilator and I have to deal with phone calls to the respiratory company tomorrow. Thank goodness for relay calling, but it does take a long time.
I had my first Botox injections in my legs and about now is when the effects are supposed to be peaking. It seems to be going well because the aides don't have to stretch my feet as much as before, to get them in the braces. And, for the first time in years, my feet look like feet again, instead of big shapeless lumps. I might even sometimes try to wear regular shoes. The problem is that I am still not seated properly in this wheelchair and I can't put my feet on the footrests without turning them on their sides, and my knees are splayed out. The bad news is that the whole process for the new wheelchair has been halted due to insurance issues.
As for my book, I am furiously writing and rewriting, paying close attention to tone and attitude. I want to keep it as light as possible. And it seems that every day I am changing my focus and my title and chapter titles. I have two other books going on in my head which are more fictional, so I want to get this first book done. My aides are giving me more privacy these days. I am finding myself in a sort of de facto solitude -- not self-imposed, just that people who used to visit are not coming anymore, and those who still visit are coming a lot less -- and it's serving me with more time to write and do things that I really need peace and quiet to do. It's not what I would have liked, and it made for a lonely summer, but I've used it to my advantage. I've taken to being grateful that I am still here, and still able to type.
8 comments:
I'm sorry about your aunt. I had a favorite great-aunt, a brassy woman who had married 7 times (and turns out she was a prostitute for a while in the late 1920's to survive) she was always real and told it like it was and I loved her. Thank you for putting a face with ALS and the things you are going through. It changes the way we see things... instead of "an ALS patient" we see YOU, who happens to have ALS. Big difference and very important. Thank you so much, Patti
Very informative. I am going to pass this post along to all my fellow colleagues that perform Arizona Botox injections because this is amazing. I've also submitted Tweeted a link to everyone too. Thanks again!
Hi Fern,
I'm sorry to hear of your loss; but 89 was a good run.
In spite of your technology issues of late (the internet and cable box), you seem in good spirits. You've probably learned over the years that it's best to go with the flow of things. Besides, that's three bad things, so you should be good for awhile.
Kudos to you for writing a book. I hope you get it finished soon so you can move on to your new projects of fiction.
Yes, I have finally learned to "go with the flow". How different my life would have been if I'd only learned how to do this before!! Thank you all for your comments.
Dear Fern, I admire your positive focus on contributing what you can, where you are, with what you have. I am grateful for the many kinds of leverage that "machines" and technology afford us. In one perspective, all human beings have natural "handicaps" compared to imaginary super heroes. Technology enables us to be more and do more than humans could before.
I have started an inspirational YouTube channel called YesiCanVideos, which document courageous heroes like yourself who overcome handicaps to live their own best lives. The first two videos show two positive-living, wheel-chair-bound, friends who were my inspiration for the channel. If you know of any appropriate short documentary videos for this channel, please let me know.
Fern- I will always remember Aunt Ruth and Uncle Normie in Upastate NY. Evbery summer I would hang out at the coffee shop at Browns hotel. I will really miss her......Your writing is really inspiring and positive. i hope when I get to NY one of these days I could visit....
Rusty Spitolnick
Hello Fern -- I'm doubtful (yet hopeful) you'll remember me. I, too, have fond memories of Ruth and Norman from many years ago. I think Ruth is in a much better place now. It is sad and unfortunate to say, but she turned quite mean and ugly the last couple of years of her life. I'm not sure what brought it on, but she broke off her relationship with me in a horrible fashion (involving a lawyer). I took such good care of her for so many years: from the time I was 16 years old and able to drive until the day she thought it better to be near her youngest daughter. It is sad, but, I'm happy to say she is in a much better place now, with Norman. PS -- my father and I were just talking of your father, whom my father regards quite highly. PLEASE let my Uncle Irwin know that both my father, Stan, and I say hello. I hope he is doing well. Much love to you and your sister. :-) Jenn (once known as Jenna).
Yes of course I remember you, Jenn. I hope you, Ali, your mom Suzan and your dad Stan are doing well. My family used to go to your home in Putnsm Valley every Thanksgiving while your dad and mom were still together. Old people get dementia -- sometimes it's almost endearing, but more often it causes horrible confusion and anger. My own dad was diagnosed with mild dementia about 18 months ago. I never saw it, and now he is taking a medication that calms him down so much that I can't get him to talk about how he is really feeling and my sister and he live in the same town and sees him more than I do, and says she saw signs but he still lives alone, and drives short distances really don't communicate anymore. I think if your mom and her sister were "on the same page" so to speak, things would have worked out better. My sister and I
Anyway, tell Suzan that Aunt Elaine died and the only people that knew were her daughter Debby and our aunt Connie. Not even Debby's brother Lance was told until several weeks later when Debby had already closed up her mom's condo and taken everything for herself, I'm sure. So this is not the healthiest of families. I hold onto my sanity by keeping some distance. Anyway I hope u read this because I don't have your email. Keep reading my blog and commenting as u wish. Say hello to your dad for me -- I always enjoyed talking with him.
Love, Fern
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