First of all, by request I have posted some of my last remaining ModCon books to Etsy. These are the original prints, not the second edition ones printed through Etsy. You can grab them via my Etsy store, or click the thumbnails to jump right to their pages. I have more copies than I’ve listed (five) but not many more. No idea how many people there still are that want a copy that don’t already have one (or the free PDF, which you can download from the link in the sidebar), but here you go:
To catch the eye… MODCON BOOKS AVAILABLE AGAIN!!!
Speaking of books, I just got an email from Lulu that all eleven volumes of my blog have been printed and shipped, so I should have them at the start of the week. I’m quite happy with how quickly that went, and it’s nice to have a very significant step in my project to permanently archive my digital life in the physical world complete. I’ll post the PDF files and upload them to various services soon as well, to enhance the chances even more of the survival of this information.
For the last few days I’ve been going through my huge collection of personal digital photos, which on this computer is about 40,000 photos, so it’s a large and time consuming project. The plan is to take them and build a series of photo albums. I just looked at a friend’s similar project but much smaller project encompassing the first year of their child’s life. Given how easy it is to lose digital photos — although with the advent of the cloud at least there are viable protective backup insurance schemes — I am surprised more people don’t make photo albums. Maybe with all the services that make it easy these days that will change. Personally I know I far prefer the experience of paging through a photo album than looking at them on a computer screen.
That said, it has been enormously personally difficult to do this. I can’t begin to explain how heartbreaking it is for me to see how happy I used to be, how much I was capable of, all the fun I had with my friends and family, and how strong and healthy I was. I guess it’s like aging prematurely at an abusively accelerated pace. Flipping through photos — flipping through time — I can’t live in the moment and just deal with how I feel right now and just survive another minute. I have to have it spit in my face how much worse things have gotten. The last thing I need is to be reminded how little I want to keep doing this, to say nothing of how much everyone around me gets their life drained because of my illness, how hard it is on Caitlin and Nefarious most of all. There are many times that I think that after the mourning wore off, they would be much better without me although I know they would protest the untruth of that statement and maybe even believe it consciously right now. I am reminded of my grandmother telling me how much happier and free she was after my grandfather decided to die. That doesn’t belittle the life they had, it simply accepted that it’s value not only ended before his heart stopped beating but that the negative sphere of influence affected more than just him, which I think is not entirely uncommon. On one hand I have so much that I want to do and see, but on the other hand, I’ve endured more than any person should be asked to endure. Every day for the last last ten years things have gotten worse, and every day for the last three years, things have gotten a lot worse, and there hasn’t been a single bit of meaningful help or hope from the medical community even though some of them have tried very hard. And the fact that the disease kills slowly is perhaps its cruelest aspect. In any case, as important as this archival task is for me, it is one of the most difficult tasks that I’ve undertaken, because it takes away one of my biggest defense mechanisms — the ability to live in the moment, day by day, and accept that I can survive another minute without considering with objectivity how the experience compares to some semblance of an acceptable quality of life.
But I really do have a lot of stuff to do!!!
13 Comments
Will you be selling the blog to print books?
They are actually already in my lulu store, but I was going to wait to mention it until I got them so I could show off the quality. I will post the PDF files for free as well since it seems like a weird thing to charge for. Not sure if anyone is nutty enough to buy them because they’re not cheap to print on demand in full color at that size. Although in time the price will drop I suppose.
I know it doesn’t really offer much help, but I was wondering if you had read this journal article about tubular aggregate myopathy, https://www.neurologyindia.com/article.asp?issn=0028-3886;year=2010;volume=58;issue=5;spage=747;epage=751;aulast=Ghosh
I thought it was interesting, especially since it doesn’t appear there has been much research on the condition at all.
THANK YOU! I’ll print this out for my doctors as well in case they haven’t seen it.
Been a big fan of your work for years — I was one of the folks who used to send you postcards and such — and although it is heartbreaking to hear about what you’re going through and see how it has affected your interactions with the world, I wanted to thank you for posting your thoughts and experiences. You’re one of the most influential minds of our generation here in Canada, and I’m sure it’s damn hard sometimes to watch yourself go through all this, much less to talk about it comprehensively to a largely-anonymous audience.
No problem! There are 10 articles total listed on pubmed (https://www.ncbi.nlm.nih.gov/pubmed?term=%22tubular%20aggregate%20myopathy%22) but that is the most recent. If you want any of the articles that aren’t available as a full free text, let me know and I’ll email them to you. You doctors obviously should have access to all of them also.
hey shannon, a friend just recently sent this to me and i thought it was quite interesting.
https://www.mcgill.ca/research/channels/news/214078
Love you always. It pains me to know how much pain you’re in. And I understand your point about C & N being better off after you leave, but I disagree. Your mind is still so active (that’s the part that gets tricky… Did your grandfather have dementia?) You still have way too much to offer. It’s OK to be a bit of a burden to people who love you. Life happens… Just be thankful that you have so much love in your life and that you’re able to give back in the ways you can (perhaps more emotional than practical.) I wish I lived closer; I’d help in any way I could.
I want to learn more and more to see as beautiful what is necessary in things; then I shall be one of those who make things beautiful. Amor fati: let that be my love henceforth! I do not want to wage war against what is ugly. I do not want to accuse; I do not even want to accuse those who accuse. Looking away shall be my only negation. And all in all and on the whole: some day I wish to be only a Yes-sayer.
https://www.amazon.com/Embodied-Wisdom-Collected-Feldenkrais-ebook/dp/B004ZZKT5C/ref=sr_1_10?ie=UTF8&qid=1329858410&sr=8-10
mind over pain
I just bought: ‘Embodied Wisdom: The Collected Papers of Moshe Feldenkrais’ by Moshe Feldenkrais
https://www.amazon.com
An educational system of neuromuscular re-education known for its gentle approach, the Feldenkrais Method has been shown to dramatically improve individual functioning by increasing self-awareness and facilitating new patterns of thinking, moving, and feeling. Intended for those who need to improve their movement repertoire for professional reasons–dancers, musicians, martial artists, gymnasts, and…
Hi Shannon,
Found your site while searching on TAM. Have you tried Verapamil? There is good scientific and anecdotal evidence for the treatment of TAM with calcium antagonists. The downside is that in my opinion Verapamil suppresses the symptoms that tell you that you are doing too much. As long as you are aware of this and pace yourself, the benefits can be spectacular.
We’ve talked about calcium blockers but have not tried them. My primary doctor isn’t qualified treating rare diseases and it’s been gruelling getting me in to someone with specific knowledge.
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