Being labeled as just a patient, when you feel more than apt and capable, is an infuriating feeling. The pity, the discrimination, the exclusion – so unnecessary. People forget that most of us were healthy before. We went to college, held important positions at work, earned titles. Even the ones that were diagnosed with pediatric MS also have many accomplishments under their belts.
The other day I went on a school field trip with one of my kids where there was a lot of walking involved. I offered to go as a chaperone, but I advised the teacher of my limitations. He said, “It’s OK, no problem, you’ll be in the group where your kid is with another parent.”
My son didn’t want me to use my scooter in front of his friends, and out of love for him, I agreed not to bring it. It wasn’t a big deal; I think I managed the walking pretty well. We went to a museum, so there were many pauses in between and places to sit down for a short break.
But when I first got there in the morning, I noticed that all the other parents had a special name tag, a schedule on their phones, and they were all part of a group email and a group text, from which I was excluded. Hmm!
One of the parents asked me, “Are you not part of the group text?” while another chaperone asked the teacher where my special name tag was. To which, he responded, “She…she’s…” while shaking his head NO. I couldn’t believe it! He deliberately excluded me from all correspondence among the chaperones and still didn’t know what to say in front of me.
The parent that asked about my nametag talked to one of the museum staff members and got me one. I realized at that point that the teacher thought of me as totally incapable. How does he think I’ve raised three kids on my own? Is it because I walk slowly and use a cane that I’m useless and can’t watch over kids?
Well, guess what? I ended up watching 8 to 10 boys during the lunch break at the cafeteria all by myself, while the rest of the group was outside having a picnic. Nobody died, they were all fed and taken care of, and actually they had a great time and followed all my instructions without any incidents or casualties.
This incident reminded me of another occasion where the kids had to take an exam at a different location, and their school was looking for parents to volunteer for the carpool. I offered my car, since I drive a van, and the principal thanked me for that. But I didn’t hear back from her, so I left it alone until the day of the test.
There were other parents transporting other kids in their cars. That’s when I understood that the principal didn’t follow up with me because she had seen my brace, my KAFO that I wear on my right leg, and probably thought that I could put the kids at risk, so she disregarded me.
If she only knew that I drove 700 miles and crossed four states all by myself with my kids in the car when I relocated last year. I’m an excellent driver with an impeccable driving record. I actually drive even better than before due to the stability that my brace provides. I drove myself to the hospital the night I got paralyzed, for crying out loud!
So yes, I’ve felt discriminated against. I know we must take extra precautions, especially when we have mobility issues, but please don’t alienate us. We’re more than capable!
Throughout the years after my diagnosis, I’ve met incredible MSers that do wonderful things. They’re painters, published authors, DJs, bloggers, influencers, support group leaders, singers, journalists, and more. All these people have a life. They create, they make a living for themselves, they’re productive.
That’s the reason I created my podcast, The MS Positive Podcast: We’re More Than MS. I want to highlight all the other layers of the people that live with multiple sclerosis and celebrate their greatness. I feel there is a need for a space for them to share their victories with the world.
What other people don’t understand is that we are very well aware of our own limitations. Yes, we live a different life, but we still can do certain things. We’re not obsolete. Actually, we’re pros at finding the way around doing things. Do you think I would put my own kids at risk if I felt that I shouldn’t be driving anymore?
We strive every day trying to make it work. We fight so hard to keep our independence. Against all odds we stay in the game, regardless of our challenges. Living with MS is a daily battle. We face so many hurdles from the moment we open our eyes in the morning. So please, cut us some slack and give us some credit.
Allowing us to thrive and being a participant of life makes us feel alive. It makes us feel that we still count. It makes us feel worthy. We’ll let you know when we need help.
We’re still here!
Photo Credit: DigitalVision / Getty Images
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