Monday, April 30, 2012

One Reason Why Families With Disabilities Become Hermits

Sometimes I feel like a hermit.

Do you know how many family gatherings, birthday parties and dinner invitations I have missed because I just could not get The Girl into the home where the event was taking place? In some cases, even if I could get her IN, once there it would be such a tight space that having her in her wheelchair would be impossible. Or I'd have to park us in one corner and she wouldn't be able to move from that spot the entire time we were at that "party". Sounds fun. In other cases, the event was held outdoors but we still could not go because the terrain would not allow for the pushing of a wheelchair (like sand on a beach or rocks and pebbles in a grassy park). So I opt to stay home. Well, “opt” is not really the correct word here because I really didn’t have a choice, did I?

Just going to my dad’s house is a sweaty endeavor. The house is not crowded with people and even though it’s a smallish 3-bedroom home, there is space enough to maneuver a wheelchair within the dining/living room area which is where the front door opens directly into. So what’s the problem? Why so sweaty? Well, there are 4 short steps leading up to said front door. This means that The Girl’s power chair can’t be used because it is impossible to lift so we have to bring her manual chair (which is not as comfortable for her to be sitting in for extended periods of time). This chair is by no means light but at least it is collapsible so I can fit it in my trunk and all the pieces come apart so it lays flat. But she can’t just be wheeled into the house (4 steps, remember?)

First, the chair has to be lifted out of the trunk and assembled (opening the frame, attaching the seat cushion, backrest and footplates which could take up to about 5 minutes or so).

Then The Girl has to be lifted out of the seat of the car (try lifting over 90 pounds of wiggly dead weight out of the tight area inside an open car door, swiveling around 180 degrees and placing it on a seat that is 2 steps away without dropping it or injuring it).

Then she must be belted into the seat and leg plates and rolled across the yard that is full of roots, branches and an occasional small unseen hole (my dad takes care of his yard but it is still outdoors) to the steps of the front door. Nature is beautiful but is not conducive to rolling a wheelchair over it so you need some serious arm and leg strength!

Then she has to be bounced up the four steps, backwards, lurching up a step at a time and squeezed through the storm door and the front door, with 2 people helping with this endeavor, hoping all the while that the chair does not roll back down the steps or tip sideways and cause injury to my precious. There is option number 2, where she is physically carried across the yard, up the steps and into the house and the chair is wheeled in separately. But, again, we are talking about a wriggly, 90+ pound, dead-weight beauty. All in all, just this part of GETTING INTO a non-accessible location takes about 15 minutes of physical labor if things run smoothly. (There have been countless times where the backrest would not slide into its 4 receivers on the frame or the lap belt was stuck between the frame and the seat cushion after she was already sitting on the chair so the whole process needed to be restarted from the beginning…) When we leave it’s all the same process again, just in reverse order.

Phew! I’m exhausted just thinking about all this. And that is why there have been many times where I have just declined an invitation. Just thinking about it gets my anxiety levels up. I haven’t even touched upon what happens when we FINALLY get inside the home…
Then there are those times we get somewhere only to find that no matter what we do it's impossible to actually get inside.

Easier to stay home sometimes. If you had to do a 15-minute full-body circuit workout every time you wanted to go somewhere, right before you got into the "somewhere" you wanted to be, would it be worth it?

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