There’s that person with . . .

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I’m “meeting” some wonderful people as I deal with ALS, including folks who have other conditions that impair their ability to function in some way. Most of these meetings are by email, but they are delightful nonetheless.

I was listening recently on my local PBS station – KQED — to a radio perspective recorded by Patty, who has Parkinson’s Disease. Fortunately, medication for now controls for Patty some of the movement challenges that that disease presents. In that commentary, she talked, among other things, about being concerned that by going public with her disease, she would become “That Person With Parkinson’s.”

We All Have Something

Most of us have – or will have at some point – some condition that will make us “that person with . . .” When I was Executive Director of Breast Cancer Action, I was concerned that people would see me and say to themselves “here comes that breast cancer person again.”

Of course, breast cancer people can identify each other by those damn pink ribbons or pink wrist bands, or the chemotherapy-induced baldness or head turbans, or the more direct “Cancer Sucks” buttons that tell the real story of a breast cancer diagnosis. (Available from Breast Cancer Action – email info@bcaction.org.)

Other conditions are not so easily identified as you walk down the street or sit in a coffee shop. When I see people who have trouble walking or hear people having trouble speaking, I can’t tell what the underlying problem is, but – because I now share these characteristics — I’m far more sympathetic than I used to be.

None of us wants to be identified as the illness we have. We are all human beings, with thoughts, and feelings, and emotions, things we want to do and are doing, and things to contribute to the world. Patty, for instance is dancing!

Technology: Part of the Answer

I’m being public by blogging and tweeting, but that has a limited audience. Pretty soon (no telling when), I won’t be reminding people about ALS by the way I walk or talk, because I won’t be doing either, and certainly not doing them in public.

Technology is making many things possible for people like me. I have a program called “Speak It” on my iPad that translates the words I type into audible voice. There’s another program, called NeoKate, that supposedly works the same way, but I haven’t figured out how to use it yet. And there’s a somewhat expensive program called JayBee that has prepared phrases that make it easy to make audible what you want to say, even if you can’t talk. That program doesn’t run on the iPad.

These are just a few examples. There are many more programs available for people, some for folks who can no longer type because they have lost control of the muscles in their hands.

What We Can’t See Is Still a Problem

I’m left with this question:  how important is it to be public about what we have, so that the communities in which we live will know that there is something going on that is causing their neighbors to suffer in some way? Or so that people will think about whether there are things they can do that might help others who are struggling?

ALS, unlike breast cancer, is not a public disease, because the people who have it almost inevitably end up confined to their homes or nursing homes. They don’t go out, either because they can’t physically manage to, or they are too self-conscious to be seen in such a compromised situation.

But we need to pay attention to what we can’t see, as well as to what we can.

So if you have friends with some illness or condition that makes it hard for them to be in the public eye, think about what it means to them, and to us as a society. Maybe we should find ways to help make those people visible and able to continue to be their full human selves, and maybe be less self-conscious than they otherwise would be.

© Barbara A. Brenner 2011

 


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12 Responses to There’s that person with . . .

  1. Amy Pett says:

    Bravo, Barbara.
    There are some well-known people who go public with what ails them. Tony Judt with ALS comes to mind. And there are some who become well-known by going public with their illnesses; Barbara Brenner comes to mind. Thanks for this good work, dear friend.

  2. mary Whitehead says:

    Each, in his or her own way, should speak up and speak out. It still remains difficult for some, when they would prefer to “just not notice”. However, it never ceases to amaze me that, when someone who has “issues” speaks up, we learn more about the person than their illness. I couldn’t speak up very well when I was going through breast cancer surgery and later treatment, but, once I had a sense that I might be here for awhile, I really didn’t want others to have to suffer in silence. You know me, Barbara, and I heartily endorse YOUR speaking up! What a great voice, and thanks for using your time to help others! I wish I lived near you!

  3. helen Jacobs says:

    I think we all tend to forget the ‘there but for fortune’ piece of relating to people with impaired mobility. So many people that I see (mostly through my job) have limitations, mostly age related, but are no longer able to walk well, or to see well, or to hear well, and they are constantly coping with the realities of their current situations/ and trying to make the best of it in whatever ways they can.
    We’re just such a youth oriented and “able-ist” oriented society.
    Thanks as always for the work you do -

  4. abby abinanti says:

    well since I can barely figure out how to do your blog…I am not “available” to comment of alternate communication methods…actually Lorie had to set up the e-mail notice….
    as to not being id by illness…I will have to think about that…I guess assuming that an illness/disease is a negative as opposed to an identifier I can see the point…Interesting…I am thinking…a

  5. Nurit says:

    I am glad you are writing about this stuff, you remind me on a visceral level that there is no end to the “coming out” we face throughout our lives. It may begin with sexual orientation – mundane, it now seems to me – but may go through the gamut to life-threatening conditions.
    I appreciate you continuing to document your thoughts so eloquently – and so pointedly. While I hope I don’t have to face these situations, I am grateful to have such a guide – just in case….

  6. JoAnn Loulan says:

    I’m 62 and remember my best friend when I grew up had a paraplegic father. His family was wealthy and thus he had an accessible home, an elevator (which we rode in play endlessly), and hand controls for his car. He drove everywhere when NO ONE in a wheel chair went out. He would drive my friend over to my house or other places. He didn’t get out of the car, he never came to school events, he didn’t go in and out of stores (we lived in a small town in Ohio, it’s not like no one knew him, everyone did but he still didn’t go out). I remember that no one wondered why he didn’t go anywhere except when he drove his car around. I also remember that when he had a car accident with my friend in the car. It was close to my home and she ran there to get help. It was an interesting conversation about whether he should even be driving or certainly shouldn’t be driving his daughter. It never occurred to me until just now that I never rode with him. He probably wasn’t allowed to take me. Society has come a long way since then, people in wheel chairs go everywhere now, but people with other visible disabilities are certainly still hidden. Let’s keep going.

  7. Susan Pelletier says:

    I am glad that technology will continue to keep you verbal Barbara. We tend to look the other way unless the illness directly concerns us. Please continue to speak out and we will be with you.

  8. Donna Brorby says:

    One of the central challenges of life its to know oneself and live as oneself. We all have struggled with it. Barb, you are blessed with the maturity and wisdom and cajones always to be you and live your life fully as yourself. (Susie too.) You (both) inspire me. db

  9. Glen Janken says:

    A semi-relevant pet peeve. There are a lot of older, somewhat feeble people around my neighborhood. It frequently takes them longer to cross the street than even the longest green light allows. It totally pisses me off when someone is impatient with them or even – unbelievably – honks their horn at them. I mean, really! Someday we’ll all be there if we’re fortunate enough to live that long.

  10. Sally Aitken says:

    Where there’s a will there’s always a way. Good louck Barb.

  11. Diane Tompkins says:

    To me, it’s important to be “public” (however one defines it) because the more aware I am of another’s reality, the more I am called to remember of our interconnectedness and the more fully human I have the opportunity to be.

    And much more to the point, I have been learning a lot as family members and various friends deal with illnesses, depression, disease how vital it is to express my love for them. I love you, Barbara. So much.

  12. Denise Bostrom says:

    Thank you for your courage and generosity in writing about your state of health and illness as they unfold. My neighbor’s 24 year-old-son once played on the HS tennis team with my son, and now the young man is wheelchair bound with ALS. However, he’s the Assistant Coach of the tennis team, and never misses a practice, or a game and I believe its his tenacity and mega-watt smile that has contributed to the team’s esprit.

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