monagustafsonaffinito   CONVERSATIONS

In no particular order, but worth remembering and sharing, here are some things I’ve observed in the process of treatment and recovery from the April 15 event.

I’ve often wondered what’s the best way to speak to someone in a wheelchair. Kneel down? Bend over? Remain at one’s own level? I still don’t have the answer, but I know the most important thing is to be within comfortable view and hearing for the person in the chair. It can be a lonely position to be in, as if one is not a part of the world around one. That’s especially true if there are two or more people involved in addition to the one in the chair. Don’t forget there are at least three people in the group. Just because one is in a lower physical spot is no reason to be demeaned as belonging in a lesser position. Maybe a better way to put this is to strive to remain within eye-contact position. Obviously if you are pushing the wheelchair, you can’t be in front of it or beside it, but you can maintain conversational presence. Just don’t overlook the person in the chair.

This applies as well to being with a person using a walker. It’s a rule of courtesy that should apply when just walking with someone. Don’t walk behind me; I may not lead. Don’t walk in front of me; I may not follow. Just walk beside me and be my friend.

In using a walker, one becomes aware of variations in the floor, and the danger of rugs that can catch on the non-wheeled part of the walker. A couple of days ago I almost caused a woman to fall – it ended in a stumble – because my walker caught on the exit rug, pulling it up enough to trip her. Maybe people who place rugs and such in public places should be better aware of these dangers. Certainly the person using the walker, and those walking with her, should be aware of the danger.

I’ve learned the terror of helplessness, which for me is a temporary situation, but certainly heightens my sympathy for people with severe and permanent injuries that make them more dependent on others. When I am lying flat on my back at night with orders not to roll onto my side and unable to get up for bathroom calls, or in an emergency, I am aware of my almost complete inability to take care of myself. It’s a lesson I’m happy to have learned, though I’d much rather not have learned it the way I did.

On another note, I’ve learned to appreciate the help my friends have given me shopping in my closet. Especially, I’d like to point out the importance of pockets for carrying things around. They chose one hoodie which is perfect for leaving hands free for the walker.

I’ve also learned to appreciate the tools to which Occupational Therapy has introduced me for reaching things without bending over, for pulling on clothes, including sox, the long shoehorn, and another grabber. In that, I’ve developed such empathy for people who need such tools for the rest of their lives.

Another thing I’ve observed is the problem with some restroom doors and facilities. Once inside there are the large booths to accommodate people in wheelchairs or walkers, but the entrance door can be very heavy – more than the 10 pounds I am currently limited to, for example. It’s not true everywhere, but where it is, it can be a serious obstacle.

I’m sure I’ll think of other things to add, but this final one has been really important and instructive for me. The staff at the hospital and here at the rehab – Auburn Manor — are amazing. I believe the aides would qualify formally as “unskilled labor,” and I watch them eagerly accepting overtime to add to their pay-by-the-hour income. But they are definitely not unskilled. And the best thing about it is they all very clearly enjoy their job. One aide left at one point for a corporate job and begged to return after a couple of days because she loves the work she does here.

The dining room staff as well is amazing. Most everyone is wheeled in and wheeled out by staff, and set up with the right meal for them. I believe there are as many special needs as there are people, so it’s quite a job to carry out quietly, competently, and with kindness. All in all amazing, skilled, giving people.

Finally, I’m so aware of the fright of being unable to meet the bills. Today has been largely given to exploring all insurance options. My heart goes out to people whose savings, and even their homes, have been sacrificed to medical bills. My dismay goes out to those who blame the victims for being in that bad situation.

So that’s it for today. Like so much of what I do, this has been written with frequent interruptions, this time working at preparing to go home and finding the necessary support – financial and otherwise..