“We have missed you, why haven’t you been in for a few months?” asked the cheery clerk at the video store. My husband Bob and I looked at each other and Bob said, “I had a stroke.” With that we both
started laughing. The clerk looked at us and said, “Most people don’t laugh about that sort of thing, you must have a good sense of humor.”
It is not that Bob and I think his stroke was funny; far from that, it is just that when you are part of a team that includes one disabled person you spend quite a bit of time trying to appropriately answer normal-sounding questions that no longer apply to you. Sometimes you just give up and say it like it is, as we did to the poor video clerk.
I think the biggest thing that I have learned in the past year and a half, since Bob became disabled, is that some of the handicap “aids” aren’t much help at all. For example, it is much easier for Bob to use a few stair steps than it is for him to walk on a ramp. Luckily, a member of Sandusky’s Stroke Club told us that before we agreed to get the ramp for our house that the social worker wanted us to have. For other folks, a ramp may be just the thing that they need, and a building with no ramp may be impossible for them to enter.
Bob’s stroke caused him both physical and mental challenges. His short term memory can now become overloaded, causing him to seem to forget things that, in reality, he never entered into his memory. This memory problem creates an interesting situation when we are in a new public building and Bob needs to use the restroom. I have to go along and wait outside the restroom door so that I can guide him back to where we started from, because more often than not, he will have no idea how to get back. Most men going into the restroom just look at me quizzically; one recently commented that he had only ever seen men waiting outside of ladies rooms. I smiled politely.
It takes Bob a bit longer than a non-disabled person to respond to things around him. On occasion, when Bob is grocery shopping and having to take a bit longer to decide what he wants to buy, we find pushy people. One lady said to us, “If you aren’t going to buy anything, can you move out of the way?” I had always wondered why disabled people seemed to consume so much space, as in store aisles. I figured they just weren’t being considerate. Now I find that Bob and I consume lots of space. I am most often on Bob’s left side holding his hand. If I hold on to him I am able to feel the second that he loses his balance and respond quickly enough to catch him. This makes us two wide in an aisle. Even if we walk single file and I have a hand on his back (again, to feel for imbalance) Bob still has to walk more in the middle of the aisle because his gait is not smooth, and he tends to knock into the things that the stores like to hang in the aisles and on the end caps. We also need more space in parking lots. Bob has to swing the car door wide to get out, often lifting his left leg out of the car. He can’t do this and protect the car next to him. The wider handicapped spaces are a great help to us.
We really get a chuckle out of one oft-repeated situation for us: Bob and I are somewhere talking to one another and a person comes up and asks me, “Can I talk to him?” Of course you can! Some people are uncomfortable talking to handicapped people, for fear of saying the wrong thing. If you are just genuine it all works. A man at the gym recently said to Bob, “So, you had a little setback?” Bob was very willing to tell the man about his disability.
Here are a few other things that I have learned:
Do not try to help a disabled person stand up or get into or out of a car, unless they request help. Most disabled people have developed a system for these movements, and “help” might make it more difficult for them.
Do talk to disabled people, and do talk about current events, Bob and I like to look forward.
Do tell the disabled person when it looks like they are improving. Bob says that this sort of encouragement really helps him keep working.
If you are a caregiver for a disabled person, make sure that their clothing and grooming are up to date with the current fashions. Also, make sure that the clothing is easy to put on. Bob finds that synthetic materials slide on much easier, than say, flannel.
Most disabled people that we have talked to have accepted their limitations. It is OK to feel happy that you are not disabled, we are genuinely happy for you too!