There Are No Words: August 30th
Estimated Energy Budget (EEB) – 2015: ?¢; 2016: 50¢
Naming note: I haven’t settled on a taxonomy for the daily post. Yes, if you’re going to read my writing there be words like “taxonomy” used on occasion.
10:30AM – I’m Writing The Book
At this point last year I started to collect my writing, but soon gave up (that same day in favor of a movie, in fact). Facebook made it very hard to go back through my timeline and find the things I’d posted, let alone scrape them out and make them into something readable.
Going through day-by-day is working out much better than the bulk-collection I tried last year. Still more effort than expected but now I have a workflow.
As for the purpose of the book and what an audience might get from it, I think the idea of a guided diary is interesting and potentially useful. What I don’t have is a clear narrative – at least not yet – because I’m too close to my own story. I’m gaining some perspective as I go through this process, but the feedback though Medium is not nearly as immediate as Facebook. We’ll see where that goes.
I took a conservative approach to my energy today, since I’m helping a friend out a Sunnybrook tomorrow. I did work on the fantasy novel thing for a while, did this diary for a while, and walked dogs for a while. I ran out of energy for editing video, which makes me feel guilty. I need to break the Ivy Lee list way down into smaller batches to make it work well for my situation right now.
It turns out that the “I’m Writing The Book” post below is from August 31st, 2015. (It’s 18:30 Aug 31, 2016 as I write this, and have just discovered my oops.) I didn’t put up a TANW post at all on this day in 2015. I think it’s the first day I missed.
That works out OK from a writing point of view, as the 31st has been an eventful day.
08.30 5:00PM – I’m Writing The Book
But For Whom, and To What Purpose?
I have just started going through my Facebook to collect all my posts. I’ll be reposting more of them to this group, as well as collecting them into blog posts at my own (non-Facebook) site.
I’m doing this for two reasons:
1. Make it easier for people who are looking for insights into this experience to find information;
2. Make it easier for me to start putting together a book version of all this.
That’s where you can help.
Most of you found this because you know me or my family. A few of you have experienced this kind of cancer directly or indirectly.
If I’m going to tell this story, I want it to be heard and I want it to affect positive change in people’s lives. This means I want to know why you read this. What do you get out of your time with my words?
Comments were insightful, flattering, and moving. New comments and observations are welcome.
Jay Cormier: I read because I care about you – but also because I haven’t experienced anything like this in my life yet, and your candor has been very intriguing. It’s like you’ve lifted up a veil that kept that part of existence secreted away. Your dignity and humour has made it also entertaining – which seems weird to type because that seems wrong. But knowing you, I think you’d be glad to know that your words have entertained us while informing us. I also liked reading about your inventions and thoughts on how to make this whole process better/easier/more efficient for others in the future. Keep on writing dude!
Michael Halas: I think Jay hit it bang on… And entertaining, while it sounds weird, is generally a large reason for books… Unless you are writing a textbook. So, if you wish to appeal to people outside of your circle, then there will have to be entertainment. And because of who you are – intelligent, wry, brave, and exposing… It is. And it will be.
One other thing… EVERYONE has experienced a roadblock in our lives which has caused us to lose our voice or feel stifled, frustrated, and mute – although only few so literatally. THAT is your common ground with your audience. And that is the story you can use in order to educate, entertain, inspire, and motivate. Whether you choose to use your cancer as a focal point, as a side anecdote, or anything in between, I believe that is what you are striving to talk about. I don’t know if that answers your question, but I hope it helps. Goodnight, my friend.
Jill Hosein: I read because of our family connections and because of the feelings I’ve always held for your family. I read because I want to support you however I can & I am amazed at your grace and candour through this experience. I read because my own cancer was kind enough to me though it wrecked me emotionally and I had not one ounce of the strength you’ve shown through this. I read because I love that you have shared vulnerabilities and humour in a way that provides others with hope and a sense of normalcy. I read because your journey is important and I am grateful you allow us into your world so we can learn.
Annie Evangeline: I read because you write well. I still have the letter you wrote while in first year. It felt good to know that even though you were so far away, you were mucking through the same brown stuff I was going through. I don’t know what it is like to have cancer – but that doesn’t mean I can’t learn from you and share (even if it is in a small way).
Kathy Turbucz Poirier: You do write really well, i wish I would have kept a journal. I read because I like to help people new to this life changing experience accept themselves and know that they are still the same person they were before. We are so much more than our vocal chords.
Sherry Darling: I read because it helps me better know someone I like and met a long time ago. Your experience and how you respond is as individual as you are. I also read because what you write gives me insight into what someone might feel/need/do as a patient and a person who has a dramatic change in their ability to communicate. It gives me courage to approach real and personal subjects with my patients.
Paula Varley McFadden: I read your posts because I care about what you’re going through, but also because you write well, and you’ve been very inspiring. It’s not just that you’re entertaining (and you are, even though that seems so wrong to say :D Gallows humour rocks!), you’re also engaging. That’s a gift not everyone has. On a really personal level you’ve given me some insights and new ways of thinking of my own voiceless one and how I can help him find his own voice. And there really are no words for that.
I was contemplating this some more last night. Michael hit the nail on the head in terms of a focus and an audience for being “voiceless”. (Sorry, this could get a little long.) I wanted to expand a bit on an idea that might be worth exploring for you (because I think you’d be able to articulate it wonderfully). There are quite a few types in the world that lack a physical voice for one reason or another: post trauma (stroke, cancer, injury, psychological), non-verbal ASD, non-verbal for other conditions both congenital and acquired (think ALS, Parkinsons, even Alzheimers), partly verbal, etc. Sometimes, they are able to find other ways to communicate, sometimes not so much. There is an unfortunate tendency for many people to mistake unable to speak with unable to *think* and it is highly distressing both to the individual and their families. Yes, I’m speaking somewhat from personal experience here.
Aside from us, I can direct you to a few things that you might find interesting: there’s a book and movie that I remember – the book is “A Taste of My Own Medicine” by Ed Rosenbaum, the movie is “The Doctor” with William Hurt. The book was written by a doctor after his own diagnosis and treatment for throat cancer and how it helped him be a better doctor after being a patient (specifically a voiceless one).
“The Reason I Jump” by Naoki Higashida is written by a 13 year old boy with autism (warning: it’s a major tearjerker in places). He is nonverbal and writes by pointing out one character at a time to a facilitator, and it’s an amazing insight into how deep and profound the thoughts of a child with ASD can be even if many people would write him off as borderline intelligent. There is a man named John Franklin Stephens who writes very eloquently about having Downs Syndrome and how he is perceived because it takes him longer to process and respond to others in conversation. And there’s Stephen Hawking, one of the most brilliant minds ever, who is frequently and causally reduced to a joke – “that guy in the wheelchair with the robo-voice”.
I really do think that there is a wide audience for you out there. Sorry again for the length of this post. :) But it really is an important issue.
Julian Sammy: Paula – apology for post length denied. You’ll just have to suck up being informative and helpful. That one is on YOU honey. That one is on you.
Tawny Hale: After the shock of my mom’s diagnosis wore off a little I started looking for support groups. Your is one. I followed you because your story and moms were very similar and it gave me insight as to what to expect because I had nothing at that point. I believe yours was more complicated but i learned so much from following you. Your candor and humor helped pull me out of a deep depression because through you I gained knowledge and was reminded to look for the positive which until that time I just couldn’t. My entire family knows you and your story and some follow you as well. They even ask how you are. Your a special person with an amazing gift and a voice to use it. Now I follow because I’ve come to care, I want to see the happiness that is so well deserved and to know your doing well. You gave us hope, knowledge, laughter, and taught the importance of its not what happens to you in life or anything else for that matter, it how you choose to handle it. You can crawl up I to a corner feeling sorry or you can get out there and live. You’ve given an entire family of strangers hope. That’s a priceless gift and one we hope to pass on as well. So thank you.
Julian Sammy: Tawny, I write this several minutes after reading your post. #ThereAreNoWords means more than one thing I guess, because you had me speechless. Thank you, and I’m glad you found something helpful. See, now I’m crying in my salad, and I already HAD dressing. Sheesh. :)
Tawny Hale: LOL… good tears go well with salads!
Julian Sammy: Thanks for all the feedback, everyone. Not only does this inflate my ego to previously untold proportions, it is very helpful in establishing a focus for writing.
The final word on the matter goes to mom:
Kathy Sammy: I read for love and to learn.
In other news, it turns out I’ve been dealing with my lymphedema from the beginning, and had forgotten:
I ended up ditching the copy-paste effort to rush around and get to the movies for the first date night Kathleen and I have had in ….something like 3 months? We saw Mission Impossible (finally!) which was a fun ride. Now home, catching up on this, and getting ready for bed.
Oh – and with some trepidation and great care, I shaved today. I decided to keep a little beard to show where my jawline is supposed to be – or at least, where it was. My lymphedema has come down dramatically since last week, but this helps my face look a bit more like it used to, for now at least. I’m doing my physio too. Who knew I was so vain about my shoulders? I had no idea that I really cared about having some meat there! :)
OK. Now to bed.