My husband and I are fans of the Ebert and Roper TV show. We’ve been watching it since before Roger Ebert’s original partner, Gene Siskel, passed away from a brain tumor (as I recall). Ebert has been off his show for at least a year, and it’s just been announced he’s not coming back - at least any time soon - because he’s lost his ability to talk due to complications from thyroid cancer surgery.
What’s he doing instead? He’s writing his reviews. I can only imagine the frustration of not being able to talk. It would take so much longer to say things, and at his age, I don’t know if learning sign language would be all that easy. Though his career as a film critic has most certainly been severely interrupted for his health, it seems his passion for his work has inspired him to get back on the horse in a new way, and just as soon as he could.
This is just one more example of how the human spirit and drive, when combined with a little help from technology, makes it possible for those of us with long-term, uncompromising health issues to remain “gainfully employed.” Sure, Ebert is famous, and he’s probably got lots of resources. However, I would venture to say that it’s his drive - his warrior spirit - that’s caused him to find ways to work anyway.
We, who are not so famous, also have tales that would inspire others, if only we would tell them. As you’re living your life day-to-day, and dealing with your own set of circumstances, you’re living a story worth telling. When I decided to write Women, Work and Autoimmune Disease with Rosalind, I did so to help tell my story, and to give back to “my community.” Perhaps you can’t share your story too openly at work, but can you share it with someone else who’s still coping with the early stages of shock and denial? Have you?
If you’re not seeing the drive you exhibit day-to-day, tell your story to someone. Watch them as they hear you speak. If you really want to kick it up a notch, ask him or her to tell you their story too.
Joan
P.S. I’ll be on vacation from the 9th through the 13th, and will be back with another post next Monday. Rosalind will return shortly thereafter. I bet she’ll have some new tales to share with us.
Not only would it require several years of study to learn ASL, Mr Ebert would need an interpreter as well.
However, people with speech impairments (due to a wide variety of causes) have been using special-purpose “alternative augmentative communication” AAC devices for years. They’re finally becoming widely affordable thanks to mass market computers with speech synthesizers. Users can input their speech in many ways: a keyboard, a single switch, an eyeblink, and then the computer turns that text into speech.
The most famous user of AAC is undoubtedly the astrophysicist Stephen Hawking. Other people who find AAC the way to go include people who’ve had strokes, have CP or other impairments that interfere with the mechanics of speech production, or have mutism due to autism or other cognitive disorders.