Breath & Shadow
A Journal of Disability Culture and Literature
By Wendy Kennar
Here the world continued on as it always had. Work. Family. Dinners. Dishes. Laundry. Bills. Hugs. Kisses. Time-outs. I was the hamster on the spinning wheel, and I feared my legs wouldn't keep going. I was afraid of falling off, falling down, and being unable to get up.
There the world was accepting. This is what you can do. Now. This is what we hope you can do, later, after we've stretched, after we've worked. Here we can see an "after;" we are offered hope.
Here the world was confused. There were questions for which I had no answers. What does autoimmune really mean? How did you get it? How do you get rid of it? Can't you take a pain killer?
There the world was supportive. Stretches and exercises were modified. Never should they cause me additional pain. Push myself to a reasonable limit.
Here the world was demanding. A fourth grade class of thirty-plus students. A pre-school age son. Meetings to attend. Lessons to plan. Papers to grade. Lunches to pack. Books to read. Games to play. No time for pain.
There the world was acknowledging. What hurts? What can I comfortably do? What causes additional pain? What do I want to be able to do?
Here the world was denying. I looked okay, so I must be okay. And I desperately didn't want to be hurt, injured, and constantly in pain.
Therefore, I would pretend that I did not suffer from pain and I would be trudging along. I would be the stoic mother, teacher, and wife and, like a good soldier, carry on with my duties.
There the world was defined in medical terms. Prescriptions. Procedures. Medical records. Lab tests. Biopsies. I was defined in terms of my disease.
Here the world kept going.
And I didn't want to be "Mommy with a boo-boo leg." I
wanted to be more than a list of things I can't do any more. I
wanted to be more than my disease.
is my real world. My every minute. My day-in and
Wendy Kennar is a mother and freelance writer living in Los Angeles. She left her teaching career after twelve years, under the direction of her doctor. She is learning to live with an autoimmune disease. Her writing has appeared in several publications and anthologies, including: The Los Angeles Times, Christian Science Monitor, United Teacher, L.A. Parent, and Write for Light. She is a weekly contributor at MomsLA.com and writes a weekly blog at wendykennar.blogspot.com.