Original MTC: https://www.curefa.org/meet-the-community/tiffany-rose-gambill
Name: Tiffany Rose Gambill
Please share any updates since your last interview. Hopefully you remember me, if not or if you were recently the lucky one to get diagnosed with FA, welcome, my name is Tiffany, I’m 32 or 33, when you hit 30 the years are whatever, except for milestones! I still live in Bridgewater Massachusetts with my parents, we built an accessible apartment!
Where do you work? I am still working 3 days a week with the same company. I fill tubes with freshly minted silver coins to be shipped out. I also help HR, right now I’m making an excel of Christmas gifts bought as the company’s yearly toy drive, we buy for 80+ families. I am more of the office’s ray of sunshine!
Are you in a relationship? Still single, but guys are too needy and dramatic. And I don’t want to marry a guy then in a few years my FA gets worse and they feel trapped, just personal.
How long have you known you are living with FA? Been living with diagnosed FA for 16 years.
Are there any others with FA in your family? I am the only family member with FA.
What do you like to do to stay active and what type of exercises work for you to stay strong? I do have a trainer who I see once or twice a week, we work on upper body strength, and he kicks my butt. I also go to physical therapy 2x a week. I have a stander at home that I don’t use enough and I walk my dog in a scooter and do agility with her and my mom pushes me.
When FA gets you down, what do you think/do to feel better? [I think of] the Instagram reel where the husband asks when life gets you down, what do you think/do to feel better? And the wife answers that we search for flights.
What is a favorite motivational quote of yours? “Life is not always a matter of holding good cards, but sometimes, playing a poor hand well.” –Jack London
What is the best advice YOU could give to a person who has been newly diagnosed with FA? KEEP SINGING. When someone says you can’t, show them you can!
What is the first thing you want to do when a cure/treatment to FA is found? Stay tuned! My hope is that it improves my speech.
What is one way living with FA has POSITIVELY affected your life? So I travel a lot, all over the world. Last year in Alaska, my mom and sister told me again that I should document this for other wheelchair users. I kept thinking, so I started an Instagram and a TikTok under the same name, but I need tik tok lessons! Then when I was in Austria I bought my URL. Now typing is slow and hard, so I haven’t published many blogs yet, and it’s not on google yet! I need an IT man! I suffer from migraines which happen a lot and those days knock me off my butt. The blog is hard –– I type it up then my friend edits it. I have to hyperlink so much, upload pics and resize and organize them, include tags, then check it.
When did you start your Instagram? I started 6 months ago. My blog I am still starting, typing is hard.
What made you choose this? I love to travel, and I know with any type of disability travel is intimidating and scary; I want to show them the accessible things I did and show that traveling is possible.
Does FA impact this? Please share any adaptations you’ve made. My mom talks on the phone for me when booking a hotel, asking about the roll in shower and reserving transportation. I have a manual chair that hates cobblestones, sand, crushed rock or rough dirt, I got a third wheel that lifts my caster wheels which is what gets stuck a lot. A lot of times buildings aren’t accessible, for example, we went to Germany to a beautiful castle that wasn’t accessible, but I was fine with sitting outside and taking in the view, while my parents went inside and took photos for me, but I had the better view. I currently am in a manual chair, so they push me everywhere and I keep in mind how far they’ll walk. I also can’t transfer on my own, so I need to travel with someone.
Interviewed by
Mary Nadon Scott