10 More things you didn’t know about being a paraplegic!

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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. So take what you like and leave the rest!

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 or go camping before the accident. While we can still do these things, it requires way more thinking and planning ahead. I find that when we’re both flexible, we can take some trips.

And I pray everyday that I can let go of the past and focus on today.

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

 The Italian Grandmama

10       7/23/19

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