Ever since I met KB she has had health problems, but nothing prepared me for the panicked phone call I got from her husband two years ago. KB had a stroke. The next day KB had another stroke. In a few short days she had three more. Five strokes. KB was a few days shy of her 28th birthday. Her daughter was six.
We want to read stories about remarkable recoveries, how modern medicine is able to repair everything that goes wrong. That's not what happened this time. Two years later KB has severely limited hearing. She has only three intelligible words. None of them are her husband's name, or her eight-year-old daughter's name. Yes. No. Uh-huh. That's KB's entire vocabulary. The rest of the sounds she makes are nonsense words. She suffered from repeated seizures the first year after the strokes. Thanks to new medication she has less seizures now. KB can still read, although she doesn't always understand everything. She can write, but often the words come out of order due to aphasia. Five strokes changed her life profoundly.
Today I took her to a doctor's appointment. After getting lost we finally found the professional building. We got out of my air conditioned car and both grunted in dismay over the heat. It was 105 in the shade. I have no idea what the temperature was in the parking lot, but I swear I saw the Devil sipping lemonade and fanning himself. I walked with KB into the hospital and we both let out grunts of joy at the air conditioning.
We speak through gestures. We use some ASL and some gestures are just natural. Point left, right, up and down. We also use facial expressions to communicate. KB has a lot to say if you learn to listen. Doctors and nurses tried to hand papers to me instead of giving them to KB. Every time they did, I simply passed the papers to KB. These are her appoitment cards and her lab orders, not mine.
Disability Etiquette Rule Number One: If you must make an assumption about someone with a disability that assumption should be competence.
Does she have her boarding pass? Does he have his ID card? Does she know what she wants to order? No one likes to be ignored. Speak directly to the person with a disability. If you have to say it twice, say it twice. Say it four times. Sometimes the most disabling thing to deal with are other people's attitudes. If you speak to someone and find out they can't understand you, then you have leave to talk to a second person. Not before! I have to report that everyone at the hospital got the hint and started talking directly to KB. This made me happy.
Disability covers over some of the things KB used to be able to do. The core of who she is remains. I saw flashes of it today when we ate horrible pizza in the hospital cafeteria. I wouldn't have eaten there but of course diabetes doesn't care what I want. I was too low to drive home, so we had to eat something. Hospitals aren't known for their pizza making skill. I probably should have picked something else.
We sat at a table. I typed sentences on my iPad. She read them and answered yes or no. KB laughed at my description of the pizza. I ended up throwing away half of mine. (I was smart and only bolused for part of it, good me.) Every time KB took a bite of pizza I said, "Ewwww!" She didn't hear me of course, but she knew what I was saying. She laughed. I laughed. It was good. Except for the pizza. Ewww.
She actually was able to say Ewww after a few tries, which made my day. We left the hospital and the heat blasted our faces like opening an oven. I immediately turned around and walked back into the air conditioned hospital. KB laughed and dragged me outside. I made a big show of not wanting to leave, which made her laugh more. Both of us grunted and whined about the heat. Meanwhile the Devil stood in the shade of an SUV. He sipped his lemonade and tried to stay cool. I waved as we left the parking lot. It's way too hot in Chicago.
Right before we left the hospital one of the staff members commented that KB was lucky to have me
as a friend. I was puzzled by this. I wasn't spending time with a special needs friend. I was just hanging out with KB because she is my friend. Five strokes, hearing loss, speech loss, did not make KB into less of a person. Of course we are still friends. Why wouldn't we be? KB
remains herself. The person I wanted to be friends with is still in
there. It will take a lot more than five strokes to ruin this friendship. Today I was glad to spend time with KB. I hope she was just as glad to spend time with me.
And about the heat in Chicago... Ewwww!