“Six years ago, Sherri Connell parked in a handicapped space at a shopping center near her home in Littleton, CO. When she returned, a sheriff’s car was blocking hers. She showed the deputy her handicapped placard, her registration, her MS Center identification card, and her driver’s license, and explained that she is allowed to park in handicapped spaces because she has multiple sclerosis. He put his hands on his hips, looked down at her in disbelief, and said, “I think you stole this placard. I saw you walk into the store, and I’m tired of people parking in handicapped places who don’t belong there.” Twenty minutes later, shaking and crying in frustration, Sherri demanded the deputy’s name and badge number and told him that if he didn’t move his car, she was driving through it. “I reported him,” Sherri says, “and I got an apology from the sheriff’s department. But I was totally humiliated.”
Ik vind haar stoer. Maar ik weet van mezelf dat als ik heel boos en gefrustreerd ben (onrecht!) ik ook in de jankmodus schiet en gek genoeg scherp kan reageren. Ik had hem denk ik ook nog een trapje in het uniforme kruis gegeven.
“Most people with MS are not in wheelchairs, and we’re not in hospitals all the time, either,” says Liz Knepper, 28, of Chicago, IL, whose primary MS symptom is vertigo. “People at work who knew I had MS would say ‘Oh, you got dizzy? That’s not too bad.’ But I’d go to sleep with my hand pressed against the wall to steady myself and wake up feeling that the room was spinning out of control. You can often explain fatigue, numbness, or vision problems, but when you tell people you are dizzy, they just don’t get it.” Even good friends can be inadvertently insensitive. “Sometimes friends bring me dinner, but they come too late or stay too long. I don’t have the heart to tell them that I’m tired or ask them to leave,” explains Liz.
Die laatste zin… Als goed bedoeld je in de weg zit. Durf het maar eens te zeggen. Dat. Is. Zo. Fucking. Verdomd. Moeilijk.
Wel lopen, niet lopen. Soms wel, soms niet. Soms door je benen zakken door zenuwtechnische dingen, soms door je benen zakken vanwege extreme vermoeidheid. Energie besparen. Dat is ook rolstoel. Dagen, maanden nogal veel in bed. Onzichtbaar. Eén avondje dansen. Zichtbaar. Leg het maar eens uit.
Zichtbaar versus onzichtbaar.