When
my daughter was thirteen-years-old, she was badly injured in a car
crash. She was transported by life-flight to a trauma center and taken
directly into surgery. She spent eight days in an adult intensive care
unit and had a total of three surgeries during that time: the first, to
repair internal injuries; the second, to fuse her broken back; the
third, to repair the numerous broken bones she sustained. She spent a
total of 24 days in the hospital.
When we brought our daughter home, she was unable to walk or even
stand up. We quickly learned how to navigate the world of wheelchairs.
We also realized how much of a problem it can be when able-bodied people
park in handicapped spaces for convenience. Getting my daughter’s
wheelchair out of the back of our SUV, transferring her into the
wheelchair, and managing the curbs and stairs on the way to our
destination without using a handicapped parking space was far from
convenient. I admit to yelling at a few folks. I hope they got the
message!
A couple of years later, she was out of the wheelchair and had
returned to school full time. We thought our days of caring for a
disabled child were over. However, she spiraled into a major depression
at age fifteen, which turned into bipolar disorder (rapid-cycling),
which turned into many more diagnoses – but no more hope. She was
hospitalized three times and we kept her on suicide-watch in our home
more times than I can count. Finally, after ten years of progressively
poorer results, her psychiatrist admitted her into a facility where they
slowly weaned her off all the drugs she had been prescribed.
She's now a happy 32-year-old about to celebrate her first wedding
anniversary. However, the loss of those ten years from ages 15-25 are
evident: she's afraid to learn to drive, and she's never held a job.
I'm in the unlikely and perhaps unlucky position of being able to
compare the experience of caregiving for someone in a wheelchair vs
someone with a severe chronic mental illness. Being a caregiver for
someone in a wheelchair was physically taxing but was easier socially,
because people could see the wheelchair and imagine the life that went
with it. And in our daughter’s case, we were confident that she would
eventually recover enough to no longer need the wheelchair, so we knew
our waiting would be rewarded.
Mental illness, however, is an invisible disability. It’s one that
others don’t notice at first sight. Being a caregiver for someone with a
debilitating mental illness is often an isolating experience. Unless
you've been through it, you just can't know. It's hard to keep the hope
of Advent in your heart when waiting for a miracle turns into waiting
for the next crisis to occur.
This is especially true during the holidays. Other people are
decorating their homes; you're making sure there's nothing in the house
that could be used for harm. Other people are gathering at parties;
you're on suicide-watch. I remember being alone with her all the time. I
remember avoiding public settings, because I didn't know what she'd
say.
Our loving congregation made the biggest difference during this
time in our lives. I remember our congregation opening its arms to her
and loving her, despite her hallucinations, her confusion over her
identity, her odd statements and interruptions during worship. They
loved us. They loved her. They still love her. And that made all the
difference.
Deb Oskin is an ordained minister in the Church of the Brethren. Her husband of 35 years, also an ordained minister in the Church of the Brethren, has been blind since the age of 16. Their daughter, now age 32, has a long history of both physical and emotional disability. Deb suffers from rheumatoid arthritis. She is familiar with the day to day struggles of people with disabilities and their caregivers. "Grief will always find you. But joy! Joy is a gift beyond price." She serves as Vice President of the Board for Anabaptist Disabilities Network and is active in several other faith-based organizations.