Different is OK

Recently I talked with a college student with PC. She told of the difficulties walking across a big campus. She doesn’t use crutches, a cane or any kind of walking aid. She told me she doesn’t want to be different; she doesn’t want people to know she has PC. She also doesn’t want to answer the questions that come with using some kind of walking aid.

I remember when I was in college having my doctor tell me he knew of another person with PC who was also in college. This particular person missed class a lot and the doctor told me she didn’t engage in nearly as many social activities as me. I asked if she used crutches or any kind or walking help. My doctor said no. I always felt badly for this person I never met.

Anyone who knows me knows I use crutches often. The main reason is to “lengthen my walk” (do more and do it faster!) Even as a college student, if my friends and I were going to do something really fun in the near future, they would tell me, “Don’t waste your walk.” Crutches and sometimes a wheelchair have helped me do more and go farther. I hate to be different, I hate to answer the questions, but I haven’t always understood why people won’t get the extra help.

I think that I’m starting to understand this side of it, especially after talking to this young college student. I also understand more because I’m seeing it in my own family.

A few months ago in this Corner, I mentioned my son Nathan was having a lot of pain with his feet after dancing at school. I talked to his teacher and both she and the dance teacher have been very sensitive about his feet, giving him full permission to sit out if he wants to. There’s even now a plan if he wants to sneak out and just go read he can.

However, Nate is still dancing and coming home barely able to walk with blistering calluses. The reason he is still dancing is he told me he doesn’t want to be different and he doesn’t want people to wonder or ask what is wrong with him.

Nate may be extra sensitive, because last spring, when it was hot and his feet were very sore, I was going to keep him home rather than have him participate in a fitness day of running, running, and more running. The school called me the morning of the event and said the teacher would give him something “special” to do that would make it so he would not have to participate and still not be embarrassed. This “special” thing was to send him for the duration of the activity to the bench by the school office – the one where children go when they’re in trouble. So not only did my straight-A child who is never in trouble get asked by all his classmates why he didn’t participate, but everyone who saw him for those hours (with no book to read, nothing) asked him what he did to get in trouble! He was mortified!

 A kind of funny thing happened with Nate this last Halloween though. Halloween here in the USA is the last day of October. The children dress up in costumes and after dark go door to door “trick-or-treating” in hopes of getting candy at each home they visit. The day before Halloween, Nate danced at school. The day of Halloween was another busy day for walking at school with the Halloween parade and an active class party.

Nate’s feet were so sore that evening he wondered if perhaps his younger brother could just trick-or-treat for him. That was a sure sign Nate was in a lot of pain! When I suggested he go in my wheelchair (which he will normally NEVER do) he hesitated. And then, because he was dressed up as some kind of weird, face-painted scary thing, he said, “Great! I’ll be a crippled…(whatever it was he called himself)!” I thought it was so interesting that Halloween gave Nate the chance to use the wheelchair uninhibited. It was part of his costume so it was ok.

Dave said Nate never would have made it without the wheelchair. The little bit he did walk, navigating stairs and such was more than enough. The bad side of the wheelchair is it gave Nate the ability to “trick-or-treat” longer and farther than he ever would have just walking and all my boys got an obscene amount of candy!

Everyone with PC has a different reason for using certain types of walking aides. Sometimes it’s because the mutation is different – the feet just aren’t that painful and no extra help is needed. But there may be others reasons too. And just as I’m glad people don’t look down on me for using crutches, I also want to be supportive of those who choose not to use extra help for their own reasons and for their own personal feelings.

Editorial Comment: different is okay!