Life In The Trenches

5365287_s_editedI’ll confess, for most of my life, I didn’t view myself as “disabled,” reserving this term for those with even more extreme physical liabilities. Yes, I felt “different,” but it never occurred to me that Dystonia qualified me for membership in any kind of exclusive club.

In my confused reality, I viewed individuals with disabilities as mirrors of my own imperfections, reflecting a self-image I couldn’t bear. Now I simply see people whom I count among my closest friends for reasons that have everything to do with the spirit their hearts embrace. No saints or heroes, just soldiers on personal battlefronts waging reluctant but necessary combat. After all, life is lived in the trenches not on a pedestal.

My argument with the whole concept of disability is how it creates a notion of us vs. them. Those of us with chronic illness don’t conduct ourselves by majority rule or elect representatives to a special Disability Congress to proclaim declarations of common attitude and award badges of merit for supposed acts of heroism. We take our lives thought by thought, day by day.

Think you’re so far away? Challenges abound for all of us, what’s your struggle? You could even try it for a few minutes, an hour, a day. Blindfold yourself. Shake your arm every time you eat, drink, write, keystroke, or play an instrument. Spin around crazily, then swim and sway down the street. Attempt 24 hours in a wheelchair. Do you feel to be a “sore thumb” or is your entire attention focused on your tasks? How much of you feels “able” and how much “unable?” It’s not our physical differences that mark us with a scarlet “D” but how society finds the need to distinguish us by them. The only “sore thumbs” are those thusly viewed by the rest of the hand. How about examining the degree of perfection the other fingers can claim!

The lesson I try to embrace every day is that each of us is a composite of unique information, no one aspect so particularly remarkable that we stand out as any more “different” than the person sitting or standing next to us. When it comes to my personal data, Dystonia is a fact tucked into the details of my life that’s completely uninformative regarding my worth as a person. While Dystonia is a bit of a visual drama queen, why it should dictate a “one size fits all” label is beyond me…and unfortunate.

I’m just like everyone else. I carry hang-ups, sport frustrations, worry about inconsequential details, celebrate life, laugh, love, dream, and strive to hold inner peace. May you find yours as well.

12 responses to “Life In The Trenches

  1. I Love You!

  2. You are a strong woman! I admire your strength and courage. Thank you for sharing.

  3. Meredith Berkman

    This is beautiful

    Sent from my iPhone

    >

  4. Artigo muito bom. Gostei imensamente!

  5. Pamela… thank you for sharing your story. I never knew that a there was a national #DystoniaAwarenessMonth until my neighbor gave me a local newspaper the very last day of September. I was diagnosed with Spastic Torticollis or Cervical Dystonia with Spasms when I was 33. It’s been quite a challenge. I’ve just contacted the National Dystonia Organziation about starting a support group in NC. There’s not one in the entire state? Feel free to email me directly. Thank you for sharing your story. ~ Anita

    • Anita, I must apologize for taking so long to reply to your comment. It’s lovely to hear from you and I must say the thoughtful words and beautiful photography in your blog are quite inspirational. Wishing you the best of luck with your support group and a Happy New Year. -Pamela-

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