Friday, July 8, 2011

An Afterthought on Living with a Disability

My post yesterday, the very minimal research I did about the work involved in getting published, and your comments got me thinking.  I generally don't like to talk about my current state of disability because I prefer being a little more upbeat in my posts.  I don't want to whine or sound like I'm feeling sorry for myself.  I generally try to think about anything else, which is why I love writing fiction.  I love the escape to anywhere else for an hour or two a day.

Maybe it is unrealistic to get published in my current state of disability.  Technically I could, but I would likely not be successful if I can't fully participate in the publishing process the way other people would.  I could participate, but the effort it would take would not be worth the money.  Not even close.

The thing is I can't walk 200 feet down the sidewalk.  I can't even make it to my son's bus stop.  I can walk that far and father if the surface is relatively soft, like a very thin layer of blacktop or on a thick rubber exercise mat.  But I could not walk in an airport terminal.  I would likely get strip-searched because my cane and wheelchair would set off the anti-terrorist devices for sure.  I can't walk down a city sidewalk or endure standing in an elevator.  The walk down the hallway of a hotel would require a cane and a dose of narcotics, which I prefer not to take.  They make me sleepy and stupid, so I opt out.

This morning my husband got up early and worked (yes, in his pajamas) at the kitchen table while my toddler ate his cheerios and played with his toys.  When I finally came downstairs, still mulling over yesterday's post and comments, I spilled it on him.  Maybe the idea of getting published is just something I cannot do now - maybe never - the same way I had to give a pass to graduate school and stopped doing consulting work (the computer nerd variety). 

I could go to graduate school in a wheelchair....  If I could drive that far (I cannot).  If the path from the car to the building that houses the English department were not on a sharp hill (it is).  If I could lift my wheelchair out of my trunk by myself (I can't).  If I could sit for the length of a class (no chance).

I can't really resume doing consulting work for the same reasons.  While I primarily worked at home when I did consulting, I frequently had to meet directly with the client, park in parking garages (always made of thick concrete that is unbearable to walk on now), and drive long distances.  None of these are options now. 

My doctor thinks a neurosurgeon may be able to get me walking again.  The key word is may - there's hope, but it's not a certainty.  I don't know how long recovery will take and if I will be back to 100% ever, even if they are right about the source of my foot problem.  I have nerve damage from my lower back to my right foot that may be the reason I haven't been able to walk normally for more than 20 months.  Maybe not.

Depressing isn't it?  In the length of a blog post, I can only touch on how this has impacted me and my family.  If they do fix my foot and I can resume life as normal again, I will not forget the past two years.  It is permanently imprinted on me.  I will not forget the frustrations, the way people's interactions with me have changed, the small things I and my family have given up, the unexpected ways my daily life has changed, and how my husband and kids have stood by me and other people have not. 

On the up side (I really need there to be an up side), I realized that although this is the topic I tend to avoid writing about, it is what I need to write about.  I need to suck it up and tell the whole story, not just for me, but for other people like me as well.

This morning over coffee while my babes vroomed his cars on the kitchen table, I threw out ideas to my husband about how to present this topic and all the things I want to include in it (much in the same way I used to throw out ideas to him about software design).  I suggested I could write a fictionalized story about a person like me.  Fictionalizing it would give me the freedom to get into people's heads and modify the characters and the events.  If it's fiction, I have complete control of it.  Fiction makes it safe.

We discussed it some more and decided my story should be told honestly.  It should be told honestly and from a first person point of view because I am not alone.  Chances are the other people out there feeling the way I feel aren't writers and maybe haven't been able to find a way to cope with the same frustrations I face and never would have imagined I would have to endure. 

So today I take the first step down a path I haven't taken before.  I think this adventure will be like physical therapy - it makes everything hurt more at first but eventually will make me feel better.  No, I haven't forgotten I will have the same challenges getting this published as I would for my fiction.  Whatever.  I will deal with that later.  For now, I write.


  1. Thank you so much for sharing your story. And how awesome and brave of you to take that story and use it to tell something that might help other people.

    I would not give up on being published because of your disability. Maybe you won't do the things some authors do, but not every author goes to conferences or tours or signings. Every author has a different way of approaching publication and readers. If it's important for you to get a story out there, there are so many ways in today's publishing industry to do that right from home.

  2. With so many tools for promotion at our fingertips today, I think you could do more to market something you published than you realize. Along with blogging, there's twitter and facebook, online writing conferences like WriteOnCon and endless possibilities now that we have technologies like Skype.

    At the same time, I thinking writing about disabilities with characters who struggle with what you do is a brilliant idea.

  3. I think it sounds awesome, Tonja. Can't wait to read it (and buy it). And I don't know much about publishing except that it's changing and evolving, and if you want to promote, you can. Angela has some great suggestions.

  4. Good result of that morning talk. An honest account will touch people who may also be affected, true. But it will also touch those of us who need to understand. Your one post has really told me a lot. Keep going.

  5. It would be a great story, Tonja. There are so many options for publishing these days. Odds are, you'd not be flying to do signings unless you hit it 'big'. Like JK Rowling big.

    There's a lot you can do from the computer in your pajamas to sell your work.

    My husband was in a bad car accident about a month after we were married. Broke his back. The next 3-4 years were hell. I had bilateral carpal tunnel and he had a broken back.

    Years later, after I quit my job, my hands and arms are much better. I can type my stories.

    He had a spinal fusion surgery and is much better.

    We live pretty much normal lives again. So, I can empathize with what you're going through. So, can he. Just letting you know. You're not alone. There are many out there like you. Telling your story may help you find more of them. :) It's a great idea.

  6. Yup. Keep writing. I deal with adrenal fatigue. Not fun.

  7. @Laura - I love your persistently upbeat attitude. Thank you for sending it in my direction.

    @Angela - I haven't heard of WriteOnCon. I will check into that. You are right - electronic marketing and videoconferencing are very doable.

    @August - I have some ideas I'd love to share with you. Thanks again for your support.

    @Stephanie - Thanks. :)

    @M Pax - I do not aspire to be JK Rowling big or anything close to that, so hopefully I'm safe. I do remember you talking about your hands but didn't know your husband had problems too. I'm glad it's better. I know so many people are worse off than I am and that my situation could be way worse. I have been amazingly blessed in other ways. Thanks for your encouragement.

    @Shelly - It sounds like you do a lot with your job, writing, family, and dogs - you must be exhausted. You are so positive with your blog and your comments. I never would have guessed you were feeling bad. I will keep writing. You too.

  8. You are such a courage’s and wonderful person. You have a great attitude for life and if I had not read this post, I would never have known about how tough life is for you. You always encourage me, even thought my problems are stupid and inferior to yours.

    You are an inspiring and amazing lady. I truly hope the doctors can find a way to restore the quality of life you long for.

    I think it is a great idea to write about what you are going through. As writers, writing makes everything better.

    I wish you strength and I hope all goes well for you, no matter what you decide to do. Just don't give up on yourself or your writing. Just remember how amazing you are. Thank you for always being there for me.

  9. Murees, that was very thoughtful of you.

    I am OK. I have a wonderful husband who doesn't mind doing all the grocery shopping and works hard so I don't have to worry about work. My kids are awesome too and try very hard to be low maintenance. They are all amazingly supportive.

    I probably have it better than most people. Just a little pain and trouble getting around. Everyone has that at some point in their life.