You know who my heroes are? The people I see walking with canes or in wheelchairs who look otherwise healthy--those with hidden illnesses who are struggling but out there. They haven't given up and they're not letting their illness keep them from participating in life. Now, we all have days when we have to stop and regroup at home; when the pain is too much we have to decide if pushing is going to make things worse. And that's okay.
I am a very high-functioning fibromight most of the time but even I have days when staying in bed is the best option. And I'm no stranger to the motorized scooter. Admitting that you can't walk through Target on your own and asking for access to a scooter is a hard thing to do. It can be embarrassing, too, if the employee gives you "the look". Then you have to deal with the looks and/or comments from other customers. They don't get it. Riding on those scooters is awful. They are so slow and you sit there knowing that if you could walk you could go faster. You can't reach anything from seated position, either, so you still have to struggle in and out of the seat to get what you need. No one would go through all of that without really needing to.
I want to tell you about a couple of heroes I've seen recently. The first is a woman I met at my boys' elementary school Bingo Night. She was my age (mid-30s) but walking with a cane--a pink, sparkly cane. I complimented her awesome cane and we got to chatting. She told me that she has MS and fibro and her attitude is "if you have to use a cane it should be an awesome one!" I love that! Between the cane and how stylish she was head-to-toe I was inspired. She must go through so much and yet she is rocking it!
The other hero is one I saw at Disney World. She was also young but riding a scooter. If riding a scooter through a store is miserable, can you imagine maneuvering through Spring Break crowds at Disney World?! She was calm, cool, and collected. And the whole family was making it work. I'm sure some people saw laziness or deception but I saw inspiration and dedication. Those crowds were no joke. It was hard enough to get through them on foot and I saw crowds refuse to budge for disabled or scooter-bound people over and over again.
When I can I try to say something to my heroes--just a little word here or there to show that I understand. People with hidden illnesses hear way too many negative things from outsiders so I think it's our duty to help lift each other up. I know many who suffer have gotten to the point of further hiding their struggles because people can be so crappy. I understand. It's no fun to open yourself up for hurt. I'm hoping, though, that by being transparent I can not only help others who hurt but open the eyes of those who don't understand. Maybe if enough people can raise awareness of chronic pain, fatigue, and other issues we can get some real results--more treatments, breakthroughs in what causes it, or even just pull the blinders off of people and quit the shaming. It's hard enough to suffer. Suffering in silence and fear is worse. I have decided to be open and honest about my issues with anyone and everyone. If you want to know I will tell you. If that honesty helps just one person I consider it worthwhile.
Perhaps we need a Hidden Illness Awareness Event. I first thought of a 5K but really? I can walk that but not all of us can. How about a Hobble Wobble or a Scooter Rally? :) We could even have an alternate transportation relay; we could have canes, scooters, etc that participants would have to use for each leg. I've thought about this for years--maybe one day I can put it in action.
Gentle hugs and may your day be FibroMIGHTY!
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