You can’t even tell perfect bodies apart.

My Ani DiFranco T-shirts are fraying. Not before time, you understand: They’re from a 1997 concert in Anchorage, Alaska, which I reviewed. Originally they belonged to my daughter, who went to the concert with me.

The gray tee features a DiFranco verse:

“So I’ll walk the plank and I’ll jump with a smile/If I’m gonna go down I’m gonna do it with style/And you won’t see me surrender, you won’t hear me confess/’Cuz you’ve left me with nothing – but I’ve worked with less.”

The other shirt, a kind of an old rose/mauve color, bears a single lyric:

“Every tool is a weapon if you hold it right.”

Neither of us could have known that would be the last summer of Abby’s first life. Seven months after that concert she was on life support in the UW Medical Center’s intensive care unit. Guillain-Barre syndrome paralyzed her right up to her eyeballs and nearly killed her. She’d recover function but would never be the same.

Five years ago Abby donated a bunch of clothes to a charity thrift shop. She gave me first pick, though, and I took the T-shirts. I thought it was because, having recently left a bad long-term marriage, I wanted to keep positive messages nearby. I now know that wasn’t the real reason.

What I’d hoped my daughter’s life would be

I wore the shirts a lot more than she ever did, averaging once a week each for five years. The Ani shirts were among half a dozen or so garments in heavy rotation in those days. At first it was because I was living on very little money and helping to support Abby while she waited for her disability claim. Why worry about getting new clothes when the old ones still covered me decently? Especially since I was a university student whose classmates showed up in pajama bottoms and sweatshirts?

Once I got a part-time writing gig for MSN Money’s Smart Spending blog, I could have bought some new clothes. Instead, I chose to throw most of my money at divorce-related debt. I also continued to prop up my daughter’s finances since her disability check wasn’t very big; after all, she’d been able to work for less than 10 years, and only part-time for most of those years.

I have been debt-free since early autumn 2007. I finished my degree in December 2009. And I’m still wearing the shirts – but maybe not for much longer since, as I noted earlier, they’re beginning to fray.

Originally this was to have been a post about how to extend the life of your clothes by judicious re-wearing and by hanging them on clothes racks rather than using a dryer. But what’s come out is part reminiscence and part realization: I’m mourning the imminent loss of those shirts because they represent a memory. Specifically, they represent a time when I thought my daughter’s life was planned: College, a fulfilling career, a home of her own, a husband and family.

Instead, she got pain, suffering, a trach scar, and a brand-new life of poverty and separateness as a disabled person in the United States.

Get over it

Abby tried – oh, how she tried! – to become “normal” again. Nine months after her diagnosis she re-enrolled with a full course load at the UW and developed a mania for sit-ups. She had to prove that she was “over” her illness. That she once again had control of her body. That she could do and be everything she ever had because she was not sick any more.

Americans have a skewed idea of disability. We love newspaper articles and TV specials about people who “beat” cancer or who “overcome” cerebral palsy. We can’t seem to get enough of telethons with cute, spunky kids whose lives will surely have meaning if enough people donate to the scientists toiling to cure this dreaded affliction. We like our disabled people in controlled, comfortable doses – say, every Labor Day. And it helps if there’s music.

These motifs give us the comforting feeling that nobody really has to suffer, or that all problems can be solved with chemo and personal responsibility. Along with the rest of us, Abby had absorbed the message that to be disabled is to be less of a person. For half a dozen years she resisted filing for SSI because, she explained later, “I didn’t want to set myself apart.”

She didn’t need to: Our culture is happy to do that for her. We don’t like looking at disabled people. We don’t even like to admit they exist. If you don’t have the decency to overcome your disability, then kindly shut yourself away at home. Oh, and put a scarf over that trach scar, why don’t you?

We want the happy ending – but if we don’t get it, we at least expect happy cripples. We want what the disability rights community sardonically terms the “Supercrip,” the disabled person who is self-sufficient and cheerful and such an inspiration. It’s as if they exist only to inspire us – and, maybe, to make us feel glad that we’re not disabled.

A productive member of society

I can’t forgive myself for my initial reaction when Abby first told me she planned to file for SSI disability.

“Are you sure?” I said.

What did I mean by that?

Are you sure you can’t work?

Are you sure you’re sick enough to get Social Security?

Are you sure you’re not just exaggerating?

Are you sure you’re trying hard enough?

The words came out automatically. In part it was because my family has a ferocious work ethic. Work was what you did, as soon as you were old enough and until the day you died. Not-working was simply unthinkable.

But it was more than that. I wanted to deny that she was disabled because I was afraid of what would happen to her. I was afraid of poverty, of isolation, of the second-class citizenship our culture awards the disabled. In the past I had myself used the phrase, “a productive member of society,” as though people who don’t produce aren’t really allowed in.

I don’t use that phrase any longer.

It will not allow forgetting

For a long time I couldn’t accept the idea that she is disabled. Truth be told, part of me wants to believe that a new drug therapy or a different nutritional regimen will “fix” her. Most of the time I acknowledge that the body in which she lives has changed irrevocably. Disability is part of who she is now. Disability makes her life more difficult, but it does not preclude having a life.

Despite setback upon setback, Abby continues to build herself that life. She’s married, and recently she said farewell to SSI after finding a job that lets her telecommute and work a flexible schedule. Abby’s also writing a PF/disability blog.

My daughter’s body was scarred by GBS: trach scar, feeding-tube scar, plasmapheresis port scar, peripherally inserted catheter scar. Abby once wrote a poem that compared each one to “a height mark on my wall.” She also wrote that, “You can’t even tell perfect bodies apart.”

Abby doesn’t cover her trach scar. It healed nicely, a subtle divot that looks a little bit like an umbilicus. Site of rebirth. A scar represents trauma, an injury to a body that will never again be the same but that survives. Maybe not comfortably, or easily, but it lives nonetheless. It learns. And the scar will not allow forgetting. Abby knows that every tool is a weapon if you hold it right.


34 Comments

  1. This one’s powerful Donna and needs time for a proper comment, but thanks for sharing this mix of stories and history. As a mother, I can’t imagine the fear of seeing your daughter fighting for her life and then after recovery still having to fight for a life that works for her. Sounds as if you’ve raised a courageous daughter with a good sense of what she needs for herself. As they say here, Well done you!

  2. I am a big fan of yours and I have to say that this is the most powerful thing you have ever written. It truly gives us a reason to think about how we act towards people we do not understand. Thank you.

  3. Sarah Nichols

    Well said. My son’s diagnosis of autism spectrum disorder, and the diagnosis of a friend’s daughter with Sensory Optic Dysplasia, have taught me similar lessons this year. We can’t spend all our time wanting to “fix” people with disabilities, or applauding them for being so brave. Nor do they want their only purpose to be to “inspire” other people. They want their own lives as well.

  4. I think that both of you are so amazing. You taught her to fight. I’m just in awe of you both! I aspire to be more like you. Strong, tenacious and driven, you set a very high standard for us all. I’m proud to call you my friend!

  5. This is a beautiful tribute. Thank you for sharing.

  6. So much better than a post about line-drying T-shirts :)

    As a card-carrying member of the cancer community, the degree of cover-up frustrates me. Wigs/hats/scarves are a huge component. I never wore one. My mother complained bitterly that I sported my undisguised fuzzy head at my sister’s wedding.

    My PICC hung out for anyone to see. My biopsy scar is in roughly the same place as a trach scar … It’s part of who I am — why would I want to hide it?

    “You can’t even tell the perfect bodies apart” — I love it!

    Thank you for sharing it.

  7. There are not words to describe the feelings I had reading the piece. Incredible! You and Abby are truly the most amazing people I have ever had the priveldge to read. If you ever write a book I for one, will buy a copy for everyone I know. Everything you write has relevance and meaning. Thank you so very much.

  8. Donna Freedman

    Thank you, all, for your kind words.

  9. What a beautiful tribute! I’m a big fan of I Pick Up Pennies as well as your blog–in both cases the hard-won wisdom that comes from struggle and experience informs your writing. Thanks for sharing and inspiring.

    P.S. Got the postcard a while ago–it was the highlight of the day!

  10. Deedee

    Thank you Donna for such a thought provoking piece. I read it earlier and had to come back now to read it again. I was planning to use the words “powerful” and “inspiring” in my response, but just read the comments and others have already used those words! Very well done, and it is obvious to me that you have passed your gift for writing on to Abby. I always enjoy reading her blog as well as yours.

  11. Elizabeth

    Donna,
    There aren’t adequate words to comment but I feel the need to do so. It doesn’t seem fair how some people seem to glide along through life while others face great difficulty. I think everyone faces tragedy at some point, and that those of us who have gone through it already are more empathetic and have a new-found ability to treasure each small blessing, knowing it may be fleeting. I’ve heard the analogy that the strongest (best) steel goes through the hottest fire. That doesn’t make the day-to-day easier though. I can completely understand the division of time into “before” and “after.” In my case it was a sister dying (after a very painful, drawn-out illness), leaving young children. Although it broke my heart, I think we can all learn from the simple way children accept things. Their lexicon became “With mommy we did X. Now we do Y.” Aside from the tears, they accepted a new reality. Hard for us adults to do. But Abby is lucky to have such a mom as you, and we’re all lucky for all you share with us through your writing. God Bless.

  12. Wow! What a story. Or more to the point, what a blog post!

    Abby is a beautiful young woman. Her trach badge of survival, which isn’t especially noticeable anyway, just makes her more interesting. I hope she continues to gain strength over time. One way or another, she is finding her way.

  13. brooklynchick

    I am weeping. Thank you for your honest wisdom.

  14. Nadine Perry

    Hi Donna:
    I just read this story with tears in my eyes. It was very candid and beautiful. Both of my sons have life challenges they work with on a daily basis. When I became disabled myself, over time, I have learned to be more accepting of myself. I started calling disabilities “life challenges”. I am very proud to be Abby’s mom-in-law. I love her deeply. I am also thankful to be able to call you my friend. Keep the stories coming.

  15. Thanks for the excellent read.
    It’s true for me that I look at people differently with disabilities, but I celebrate their participation in the community. Life wouldn’t be as rich if we all had perfect bodies, or “normal” minds, for that matter. Glad to have found your (and your daughter’s) blog !

  16. Donna Freedman

    @Merle: I just said something like that to my 8-year-old nephew the other day. “Wouldn’t life be kind of boring if everyone were the same?”
    Thanks for coming by, and for leaving a comment.

  17. Mario Saccoccio

    That would be, “Now wouldn’t it be a real drag if we were all the same,”
    Jimi Hendrix
    It is our differences that define us, that makes us what we are, makes us strong. Congrats on raising a strong daughter.
    As a parent of a daughter without scars but who was given a fatal diagnosis, no one stared. No one could see that this bright, beautiful young woman would probably not live to see her 21st birthday. She carried the scars inside her body. I am happy to say that she is fine now, living the life she wants. We still can’t see the scars, but we know that they were there.

    • Donna Freedman

      @Mario: I’m glad your daughter is able to build the life she wants. How fortunate that the docs were wrong.
      You’re right about the invisible scars, though. Any serious illness changes a person forever.
      Thank you for reading, and for leaving a comment.

  18. Mario Saccoccio

    “Thank you for reading, and for leaving a comment.”
    Hey, we “DJ’ers” are a caring lot…Great story.

  19. Amazing.

  20. cherie

    Thank you for sharing these thoughts. I have been blessed with a life relatively free from illness and disability. My healthy children have four living, able grandparents. I have two friends struggling with disability and the thoughts you shared have helped me to put my own thoughts in order – I so appreciate them.

    • Donna Freedman

      @Cherie: Thanks for your kind words, and for reading Surviving and Thriving.

  21. Powerful post. My young son has feeding issues (tube feeding) and I wonder how his disability will affect the rest of his life. It’s so tough to think about and I appreciate your candor.

    • Donna Freedman

      @jj: It’s tough to watch someone you love go through this. Abby’s feeding tube actually upset me more than the trach for some reason. Funny the things that bother you at such a time.
      I wish you and your little boy well. Are there other sites where parents facing the same issues can give advice and support?

  22. Donna,
    I just found this post via your post today on Get Rich Slowly. I had Guillain-Barre at age 25 in 1980. Physically, I’m pretty good. But I think of it every day, make sure each of my steps is on secure ground everyday, count my blessings everyday. Blessings to your daughter and her mother!

    • Donna Freedman

      @Carol: Thanks for your kind words. I’m glad you recovered so much function and that you, like my daughter, celebrates every day — even the crappy ones.
      Thanks for reading Surviving and Thriving.

  23. Wow. I’m glad she recovered enough to live a life, but I am so sorry she has had to go through so much crap to get there. When my little sisters compresses some vertebras in a sledding accident about 9 years ago, my only wishes and hopes were that it wouldn’t keep her in a back brace for the rest of her life. She still has some back issues but is generally leading the life she wants…

  24. Somehow it seems that our children should be off-limits to suffering. Isn’t our job as a mother to protect them from harm and prevent anything bad from happening to them?

    It is so painful to watch our children struggle. People say that you are a parent until they are 18, but you are a parent forever. There isn’t a time when you don’t stop feeling their pain, worrying over their safety, and hoping for the best for them.

    I hope the best for your daughter and her new husband.

  25. Bless you for your honesty and Candidness!

  26. What a remarkable story, and even more a remarkable mother and daughter. Thank God you are both so supportive of each other, your story is nothing short of an amazing inspiration.

  27. Donna -

    I love your posts. Keep on rocking out and sharing on your inspiring path.

    I wanted to recommend a couple of books to you and Abby – that is, if you haven’t already heard of these: The Autoimmune Epidemic and most recently, the Last Best Cure. Both are written by science journalist Donna Jackson Nakazawa who has Guillian Barré, thyroiditis and a host of other autoimmune related diseases that she is learning to live with more and more effectively and productively. I myself have lived with Graves Disease for the past 13 years with increasing success (read symptom free and no other autoimmune diseases developing) using a number of the ideas she introduces in her latest book – the Last Best Cure. I think you may both find these books immensely interesting and hopefully, helpful and inspiring on your journeys.

    http://www.donnajacksonnakazawa.com

    Best wishes with everything.

    • Donna Freedman

      @Eliza: Thanks for the information. I’ll pass it along to my daughter.

  28. Kristen

    Wow, very powerful story! This may be a few years late, but if you still have those old Tshirts, you should consider putting them together with any other sentimental tshirts and making a Tshirt quilt (or finding someone who can make one inexpensively). I’ve seen a few of these done for graduation presents with old high school tshirts, and they allow the person a fun way to hold on to all the memories even after the shirts are unwearable!

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