In 10th grade, just after turning 15; and after finally settling in, getting used to, and even starting to like California, my dad’s job moved us to Minnesota. Again, I would leave what friends I had finally made, and be the new, awkward handicap kid that didn’t know anyone.
I survived the second term, just getting my work done and spending my extra time in my room with my CD player. Third term started, and it included World History with Mr. Laliberte. He was a goofy, hockey loving, first year teacher, who was not much older than we were.
That’s where I met Katie. She sat in a desk at the front of the class, and used a wheelchair, but I didn’t know why. Tired of not having any local friend, and honestly, tired of being shunned by snobs because I walked differently, I decided to just do it. Just talk to her. I figured we at least had one thing in common, and if she didn’t seem friendly, she would just be one more person on the long list.
So one day walking back to Mr. Laliberte’s class from the cafeteria, I did it. I introduced myself, and I asked if she had cerebral palsy. I knew she didn’t, because she moved differently than I did, but I didn’t want to just say “What do you have” or “What’s wrong with you”. She said she had Spina Bifida. I think that was the extent of our conversation that day, and I don’t really remember what happened between then and the day that we went to see Monsters Inc. with a group of new friends from Laliberte’s class, and her (now our) friend Katrina, but by that summer we were pretty much inseparable.
I am lucky enough to have two best friends. Kelly and I have known each other since I was 9, and we have kept in touch and are still best friends despite everything life has thrown at us. But there are aspects of my life that nobody can quite understand as well as Katie does. And there is so much power and comfort in having someone that understands. Not just someone that believes you or even believes in you, but someone who understands. Because they’ve been there. Because they are there.
So, in honor of Katie (aka Kate), I will be doing a Spina Bifida Awareness series for October; Spina Bifida Awareness month. Due to family issues, a packed schedule, and me not realizing it was October until a month in, I am getting a much later start than I wanted to. But I am starting off with Kate’s answers to the Invisible Illness survey.
Read on and stay tuned!
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Spina Bifida
2. I was diagnosed with it in the year: 1984. As soon as I was born.
3. But I had symptoms since: In the womb but nobody realized it.
4. The biggest adjustment I’ve had to make is: Accepting my limitations
5. Most people assume: That I’m exaggerating
6. The hardest part about mornings is: Walking
7. My favourite medical TV show is: House!
8. A gadget I couldn’t live without is: My phone
9. The hardest part about nights are: Everything hurts
10. Each day I take at least 0 pills & vitamins: I refuse to rely on meds at this point though I could definitely use them. I know I’ll hit a point where I won’t have a choice but I want to postpone the inevitable for as long as possible.
11. Regarding alternative treatments I: Haven’t really tried anything.
12. If I had to choose between an invisible illness or visible I would choose: Visible
13. Regarding working and career: I miss working but it’s difficult when I can’t work more than 5hrs a day and only if I only work a few days a week.
14. People would be surprised to know: Sometimes I actually like being disabled.
15. The hardest thing to accept about reality has been: That it’s not going to change
16. Something I never thought I could do with my illness that I did was: Travel by myself
17. The commercials about my illness: There aren’t any really.
18. Something I really miss doing since my disability has progressed is: Running around. I used to love playing baseball and tag and just running around outside.
19. It is really hard to go without: My wheelchair
21. If I could have one day of feeling normal again I would: Go for a run or a bike ride. Go shopping. Maybe go to the zoo. Any place I don’t go by myself now because I’m afraid I won’t be able to get around.
22. My illness has taught me: You can never truly know, or judge, what another person is going through. Stole this but I couldn’t have said it better myself.
23. Want to know a secret? One thing people say that gets under my skin is: I can’t believe you can (fill in the blank). Drives me crazy when people assume I can’t do something.
24. But I love it when people: Take the time to get to know me.
25. My favourite motto, scripture, quote that gets me through tough times is:
26. When someone is diagnosed I’d like to tell them: Don’t listen to other people. Only you know what you can and can’t do and what you do and don’t want.
27. Something that has surprised me about living with an illness is: How much harder everything is to do.
28. The nicest thing someone did for me when I wasn’t feeling well was: Lots of things.
29. I’m going to get involved with Invisible Illness Week next year because: It’s important for people to pay attention to what other people are going through even if they can’t see it.
30. The fact that you read this list makes me feel: Like you care