Last weekend, my family of four—my husband, 5-year-old son, 22-month-old daughter, and I—went to the zoo. We played on the playground, saw the giraffes and lions, and ate a picnic lunch.
This may not sound remarkable, but for us, any outing is an expedition. My husband, healthcare activist Ady Barkan, has had the neurodegenerative disorder ALS, or Lou Gehrig's disease, for nearly five years. He is almost completely paralyzed and uses a wheelchair to move and a computer tablet that tracks his pupils to communicate.
That zoo trip was only possible because of a fifth person who was with us: Rosalba, a member of Ady's team of caregivers. At least one caregiver is with Ady 24 hours a day, helping him get in and out of bed, dress, shower, eat, and work, among many other activities. Alone, I would not have been able to drive Ady's wheelchair, supervise my son, and pull my daughter in our red wagon, but with Rosalba at the zoo with us, we were able to have a fun day out as a family.
In recent months, care has moved from being a personal concern to a political flashpoint.
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