To my surprise and delight, I believe I may have developed a following of regular readers. A tiny, loyal readership. You know who you are. You are the kind souls who ask about the next post, adding that you have missed hearing from me. “No pressure,” you say, “we know you all have plenty on your plate.”
Indeed, living with ALS is a recipe for a full plate: A smorgasbord of high dollar, unsavory options that are hard to swallow.
I lost the ability to use my fingers on a keyboard many months ago. So, I switched to dictating texts, emails, and correspondence. The last two blog posts were dictated using voice-to-text in Word.
When my voice started to go, Siri and every one her compadres, across every last app and device, abandoned me.
(Their loss!)
Frankly I felt the breakup coming with one particularly noteworthy text to a former colleague. Siri was in a mood, let’s just say it.
Here is how it went down.
I dictated, “Congratulations on your Grand Rounds, I’m sure it was a great success”
Siri comes back with, “I’m sure it was a sexy ass.”
“Really Siri?”, I say out loud.
It needs to be made clear here that the limited, remaining dexterity of my right pinky and ring finger makes sending a text far more likely than deleting a text.
With great care I prevail, and try again, going for BBC clarity.
Once again Siri delivers her cheeky retort. (Like I said, about the mood.)
Avoiding a second near-miss, I persist, this time with gusto and added volume.
The result, finally, “…success.”
Ah, but for a fleeting moment. Wait for it. Yes, autocorrect conspires against me. No doubt in collusion with Siri.
Sexy Ass never gets sent, but it heralds an epic breakup, and a pause for all my writing.
EyeGaze technology has its roots in the early work of the American psychologist Edmunds Huey. In 1908 Huey used rudimentary contact lens with a hole over the pupil and a stylus affixed to the lens to record eye movements. Experiments continued with increasing sophistication throughout the century. In the 1990’s engineers initiated work on computer applications, and by the 2000’s we had the first, rudimentary augmented and alternative communication (AAC) using EyeGaze. Today there are more than a dozen EyeGaze platforms for AAC.
Current EyeGaze platforms utilize tiny cameras and beams of infrared light to track eye movements across a screen. After calibrating one’s eye movements to the platform (a simple process), the user controls the cursor with their eyes. Resting the cursor over a letter on the keyboard types the letter. Similarly, holding the cursor over an app opens the app. Many of the systems come with AAC programs to generate speech, word by word or using prepared phrases. As you might imagine there is a steep learning curve.
EyeGaze technology is inevitable for a majority of people living with ALS. I continue to be amazed and inspired by friends who are lightning quick in the Zoom chat using only their eyes to type. Others work with spreadsheets, write novels, or create art.
Now it is my turn.
Like every major loss that comes with ALS, I experience grief as sadness and disappointment. The loss of intelligible speech creeping ever closer shines new light on the opportunities afforded by this miraculous technology. And my grief is buoyed by the hope that comes with writing again.
Dr. Ogan! You are officially one of my favorite writers! We all love hearing from you and eagerly await your blog posts – I am so glad EyeGaze Technology has continued to make this possible and it has to be said – that is a most adorable and perfect baby in your lap! What a lucky little one to have been born into the Ogan family. Sending all our love, Sarah, Scott, Jacob, Jon and Brian
Wonderful post!
Dear Jim,
Your exchanges with Siri honestly made me laugh out loud. Please don’t feel alone—Siri has challenged me, along with her sometimes sassy cousin Alexa.
My sister found her Eyegaze machine to be her lifeline when she needed to communicate and write her monthly columns for the newspaper in Erie, PA. I hope that yours proves to be the same for you. What an incredible gift that machine can be!
We miss you and your wisdom at Community Outreach Committee meetings.
Always, Caroline
Oh, yay! More writings from Jim. So glad you have EyeGaze working properly – forget that Siri, she doesn’t work for me either. 😂 And the picture of that cute grandson, Rowan, on your lap! What a wonderful soul.
Much love,
Kacie-Linn
Hi Jim. I saw firsthand yesterday how you use eye-gaze. I wondered why we lost eye contact during our conversation. I continue to be amazed how your sense of humor resists ALS. Thank you for reminiscing with me about patient care and long nights as doctors, and the even longer nights of ALS patients. At least you can dream. How is it, I wonder, that former patients enter your dreams where once again you have the chance to reassure young children, to help them pay attention to the important things in life, to share short cuts to learning the names of colors. All those colors, including some you must have made up. I am ever grateful to know you and learn from you and your family.
Jim I have missed hearing your voice coming through your writing. I always learn so much from your posts — how incredible that this technology that’s allowing you to write now began development over a hundred years ago!
Thank you for persisting — we want to hear from you, we need to hear from you! (No pressure, just affirmation!)
much love, Molly
Jim,
What a delight to hear your voice on the page again! I laughed out loud as Siri turned your congratulations into a salacious comment. Believe it or not, I still have excerpts from Bingo Bob, Boy Blogger buried deep within my computer.
I remember trying to help set up an eye gaze system for a patient in the hospital years ago and am grateful for the progress made since then. Looking forward to seeing you and Peggy soon.
Linn
Great to see this new technology working for you Jim! (What did you really want to say in response to Siri’s “sexy ass” comment?). Your voice comes through so loud and clear I can hear you speak -your voice – as I read your words. Keep writing and know how much we all love you my friend and my sibling!
Thanks for making me laugh out loud Jim. I really needed it!
Amazing to see this technology able to carry your uniquely funny and brilliant voice! Sending lots of love – excited to keep reading!
I still laugh about the “sexy ass” text! And I still say the recipient would have been pleased. Love to you and Peggy.
So good to see a new blog post from you, Jim. And such an interesting one. Am amazed by the adaptive technology which can vector from eye to key, one stroke at a time. Huey would surely be pleased to see how far his vision has come.
Whatever you write for your circle of readers in the weeks ahead, we do hope for additional photos of Rowan, what a joy.
Loved reading this! Thank you for sharing all of the ups, downs, joys, and hopeful moments in this journey with all of us. And you’re killing it with the new tech! Miss you and Peggy, and sending you both a big hug.
Love this! Your humor comes through in every post, no matter the topic it seems! We have missed your writing and appreciate the updates as always when you’re up for it.
If it’s any consolation, autocorrect in other languages is just as perverse. The thing is, sometimes you have to really know the language to appreciate what is being inserted against your intentions. It can be worse than “sexy ass” which, hey, has some imaginative appeal…. 🙂
Jim, I received my eye gaze equipment the other day. I had my daughter Clare and granddaughter Ellie assemble the floor stand with little a supervision from me. The equipment is very impressive. I did very well in two test runs before ordering my setup, so I am excited about the opportunity to master this as well.
It appears from your post that you are sailing along with your equipment as well. Congratulations! Keep the blogs coming and I hope to connect soon.
Pat Stenger
Beautiful post. Please keep posting. I am so grateful for you.
Hilarious!!! I always thought it was just me that Siri created some juicy content from. I get mad at her and tell her she doesn’t know how to speak the queen’s English, thinking it’s my Canadian accent that’s the problem. Thanks for making me laugh out loud! So many things are changing for you but your sense of humor remains untouchable! Keep writing and keep inspiring! Lucas and I miss you and your absolutely wonderful, exceptional patient care practice. Feel like we spent 19 years in on a little secret!!
Jim,
Love the story of eyegaze and so grateful you persisted! The photos of you and Peggy and the baby are lovely. Love to you from Barry and Dorrie.
It is so good to read your blog and hear your voice with it. And I’m delighted (though not surprised) at your ability to communicate with eyegaze.
We send much love.
Deborah and Margaret
You are truly amazing Dr Ogan, I don’t know that I have the words to properly articulate just how incredible we think you are…guess I should have gotten Peyton to help me compose this email:) We think and talk of you often in the Tochterman/ Katz homes, thank you!!
Thank you Jim for your example of grace and faith. I love reading your wit and wisdom!
Dear Jim, I was so glad to read in the newsletter about a new blog post. I opened it and saved it to read in the middle of a busy Monday when I wanted to be reminded about what matters.
I was laughing out loud about your Siri story and marveling in my mind about your ability to educate, to entertain and to create community, even, and especially now.
With love and admiration,
erika
Dear Jim, I was so glad to read in the newsletter about a new blog post. I opened it and saved it to read in the middle of a busy Monday when I wanted to be reminded about what matters.
I had a good laugh about your Siri story and was marveling in my mind about your ability to educate, to entertain and to create community, even, and especially now.
With love and admiration,
erika
You are a talented writer Jim, and I seem to enjoy every post more that the last! While your physical voice may be waning, I certainly still hear your distinct voice in my head as I read your writing. I hear your giggles when you make a witty comment and I laugh with you. Thanks for putting a smile on the faces of so many!
Jim,
Your blog post has brightened my day, much like any interaction I have had with you. Your sense of humor in the face of new challenges is admirable. And like Natalie, I would wager the recipient of that text would have been amused! Love to you and Peggy. – Julie
Hi Jim –
I enjoyed your recounting of travels with Siri and mastering the eye gaze technology!
This is so poignant – thanks for bringing us along your journey, Jim.
Hi Jim! It is inspiring to read these words as they are proof of your resilience to the latest challenges put in your path. I’m so grateful that EyeGaze technology exists, and that you seem to be mastering it! Thank you for continuing to write, and for letting us into your experience.
I’d give Siri a talking to on my phone if I thought it would make it to your Siri, but I’m not sure it works like that 😉
Love,
Eric Smith
You made me laugh out loud, Jim. Thank you for that. I feel the same way about Siri and autocorrect on most days.
I echo the comment above. You are such a terrific writer. Sending big hugs and much love to you and yours. xxxoo Seka