Letting You See Us

To get permission to say “cripple”, I have to let people see me. And I don’t like people to see me.

Lucia Perrillo, I’ve Heard The Vultures Singing

I sing of those who cannot.

Andre Dubus, Meditations From A Moveable Chair

 

After many false starts bounded by brightly vacuous conclusions, I deleted the cheerful post introducing my husband, John.

So without further ado: John has Becker Muscular Dystrophy, a neuromuscular disease causing progressive wasting of the large muscle groups.  Although he was walking when we met in 1993, by 1998 he needed a wheelchair. The above photograph is his everyday chair, a Quickie P200 power chair.  People sometimes call these electric chairs. They are not. Electric chairs are used for executions. Power chairs move individuals otherwise unable to self-propel.

Assistance for the disabled in the United States is laughable. I am John’s caregiver. As my own health declines, this is an increasingly precarious arrangement.

You may ask what this has to do with cooking.

When we met in May 1993, John was an emaciated 90 pounds on a 5’7 inch frame.  When we moved in together, nine months later, I assumed kitchen duty.  We did not discuss division of labor; I was steady on my feet, able to lift heavy pots and bend without losing my balance. Any cooking that was getting done was getting done by me.

Not that I knew how. I nervously spackled pork chops with egg before rolling them in “breadcrumbs” shaken from a cardboard tube. These I fried to shoe leather in a lake of cheap olive oil.  Boneless, skinless chicken breasts received the same treatment.  Main dish variations included hamburgers and the occasional meatloaf.  On the side, canned green beans, frozen mixed vegetables, frozen french fries.  Salad meant iceberg lettuce battered with bottled dressing.  John ate everything as if starved.

For the next two years, I learned kitchen basics while John gained 50 desperately needed pounds. At 26 years old, I surprised myself by finding an unexpected passion for cooking.

I can’t pretend it’s been easy, but all is not misery.  We make every effort to find humor in our circumstances, including introducing ourselves as the weird disease couple (a round of “Always Look On The Bright Side Of Life” is appropos right about now). I promise no pity parties will be thrown here, though if you’re feeling quite sorry for us, gifts of bourbon are always welcome.

No recipe today, though you could scatter these Nasturtium petals over a salad.

Thank you for reading. I wouldn’t blame you one bit for wanting your money back.

To learn more about Becker Muscular Dystrophy, visit The Muscular Dystrophy Association at: http://www.mda.org/

Lucia Perrillo: I’ve Heard The Vultures Singing, Trinity University Press, 2007

Andre Dubus: Meditations From A Moveable Chair, Vintage Paperbacks, 1999