Being a paraplegic has many obvious challenges. But there
are many challenges that aren’t as obvious. Below are a few that we never would
have known about if my husband wasn’t a paraplegic. They may also apply if you’re
in a wheelchair for other medical reasons and can’t walk on your own.
Life is short!
1. It's
regretting that we didn't do more things before the accident. My husband
and I have had so many conversations about this! It’s the ongoing “what if”
list that serves no one and gets us nowhere. But we are human and we are sad
about the losses we have experienced. And this is one of them.
We didn't take that cross country trip before the accident. While we can still take this trip, it requires way
more thinking and planning ahead. I find that when we're both flexible, we can take some trips.
Trauma in the body comes out in many ways. For my husband,
it means:
2. Having phantom
stomach pain. Following his accident, Arthur began having abdominal pains that have gotten worse
over time. They can double him over in pain can keep him up at
night. It could be a
nerve misfiring or a bone sliver that splintered off during the accident. Sleeping with an ice pack helps!
Recently, Arthur’s three daughters went to Chincoteague
together. We were invited, but my husband declined because:
3. It's
being left out at the beach. Strides are being made as wheelchair
accessible ramps are available on some beaches. But they stop well away from
the water. When I went with my husband at the Jersey shore,
I set up my chair next to his so at least we were together.
4. Those
wheelchairs that go on the beach? The large puffy wheels make the wheelchair too high for my husband to transfer into. They are for people who
can either transfer themselves or are light enough to be lifted up, perhaps an
elderly parent.
It means asking questions and finding there are more
questions to ask:
5. The bed
in a handicapped room at a hotel/motel may be too high for you to transfer
into. We stayed at a wonderfully appointed handicapped room at Sonesta ES
Suites in Somers Point, NJ. They had low shelves, a shower stall equipped for a
wheelchair and a large bathroom. But the bed was too high for my husband to transfer into since he would be going uphill. Fortunately, there was an extra sofa he could sleep on. Flexibility is everything!
It means thinking ahead:
6. Making
plans to go to a restaurant or a hotel means asking very specific
questions such as: How wide is the door? In older places, like a B&B,
the doors are narrow. Can he get into the bathroom? Will the tables accommodate a wheelchair?
We have found that by
and large, restaurants are accommodating, not just because they are required by
law. They are solicitous, holding the door, asking if this particular seat is
comfortable.
Sometimes the center pedestal at the table interferes with the wheelchair getting close
enough to the table. Arthur has found that he can sit at an angle.
It means calling ahead:
7. Asking
for theater seats that are wheelchair accessible. In some local theaters, it means sitting in
the last row. In movie
theaters, it means sitting in one of the front rows, which can be uncomfortable.
OR it could mean getting better
seats. At the Kennedy Center, we regularly get better seats, sometimes at lower
prices because we sit in a handicapped spot.
8. It's
looking for things you CAN do instead of focusing on all the things you used to do. We can go to the movies, out to dinner or for
a walk in the park or the bike path. We’ve been to DC and several of the
theater companies in the area. We've even taken sightseeing boats on the river near us.
9. It’s
learning to accommodate. I’m 4’9” so many things have always been out of my
reach. But my husband has always been
able to reach higher shelves so that's been an adjustment.
We have a set of dishes and cups placed
at a level that Arthur can reach so he can set the table or eat lunch,
especially when he’s home alone.
We have a grabber in each room to help if
he drops something or to get things off the shelves in the bedroom.
We have a washer and dryer in our unit with
the dryer on the top where Arthur can’t reach. He uses a grabber to transfer
the clothes from the washer to the dryer.
We have 2 microwaves - one above the stove that he can’t reach and
one at his wheelchair level! We can cook a whole meal in 2 microwaves!
It’s ongoing grief:
10. It’s
grieving all the losses. When I put my hand on his leg to connect with
him, he can’t feel it. He can’t feel it when I rub lotion on his dry and cracked feet. But he knows I'm doing it and he still feels the love.
Sometimes he just looks so sad. He
wants to walk again. He misses his mobility.
Still, everyday he wakes up smiling, grateful to be alive, grateful that we are together. We have managed to carve out a routine and a very nice life here in our condo. We entertain, we watch TV, we make dinner together.
And that's quite a miracle in itself!
Do you have hurdles that aren't listed here? Please comment and share with us!~
Angela DiCicco
7/23/19
Labels: 10 things you didn't know about paraplegia, living with a paraplegic, The Italian Grandmama's Guide
