Welcome to my page
Hi there!
Thanks for stopping bye. My name is Tiffany! If you didn’t guess from the URL I am disabled, that’s such a negative word, but I am quite the opposite. I mean my legs suck, but I am a ball of sunshine, most days, rolling bye in a wheelchair. I also travel a lot, both domestic and internationally. I want to show people dis/abled body where I go, including accessibility pros and cons for whoever needs it. Also, when I don’t travel I’ll have disability struggles, hacks, ups/downs, motivation, basically just life. So, I am new to blogging, but please, be patient, I do type slow, so is like a mini workout, but I’m trying.
So I’ll start with the who, what, when, where, why..
Who
My name is Tiffany; I am 33 years old and live in Massachusetts. I have a muscle condition called Friedreich’s Ataxia (FA); I was diagnosed at 15, first with Cardiomyopathy (a heart disease), that narrowed it down. There is no cure for FA or even a treatment as of 2022. **Update-May 2023, there is finally a treatment, but I am not sure if insurance will cover this new drug with a 6 figure monthly bill.**Try hearing that at 15. Basically, it is shutting down all my muscles except the brain. When I was 19 I got a walker and a year later I got my first wheelchair and right now I’m ordering my first power wheelchair.
I have glasses because FA affects my eyesight, but I buy new frames a lot. But when I try to focus on small letters my eyeballs shake, like I can’t read subtitles on a movie screen. One day they will have headphones to read subtitles.
It also affects my hearing, especially in crowds, it’s like I can't differentiate between background noises, I become a bobble head, smiling and nodding on repeat.
Then there is my speech, which is slow and slurred. This makes people think I am mentally challenged when I am not. My speech is my biggest insecurity. Communication is key, they say.
I work out with a trainer to keep my arm strength. (No Popeye here though)
Throughout this blog I will speak of FA, the good, the bad and the ugly.
What
I got bit by the travel bug about 8 years ago, I was still in a wheelchair then but I was younger. My disease is progressive, at the time I thought my “life” was over, now looking back I’d give anything to go back to that stage. I could transfer on my own, but most importantly, my speech was way better. My speech is my biggest insecurity, if researchers found a cure for anything; I’d love it to be for speech. Yeah, to walk would be great but I’m used to my chair, now it is just more annoying; but to communicate is more important to me. And I mean who wants to bring a lover home who can barely talk?! They all want Cinderella, and spoiler alert, I don’t wear glass slippers.
People take talking for granted, but why wouldn’t you? You don’t realize how much you miss something until it’s gone. The only way to describe it is if you took 10 shots and then had to read the dictionary to a bunch of foreign presidents and convince them you’re sober. It’s hard physically, mentally and emotionally, filled with frustration.
I want to show people that my disability doesn’t stop me from going after my dreams or seeing the world and maybe more companies, tours, hotels, ferries, adventures, ECT, will think more about accessibility and inclusivity.
When
I got bit by the travel bug 8 years ago and oh boy I did. But, I did travel a lot growing up. Disney world, Key West to see my grandparents, Canada for my sister’s soccer tournaments, out west to National parks, Caribbean cruises and The Azores when I was 17. But for those trips I was still walking. Then I went to college, when I was 21 I did go to Vegas where a very nice stewardess got a muscle man to carry me off the plane. After graduation, I did an internship in Washington DC. I was using a scooter down there, it was the only time I was truly on my own, I am so thankful I got that opportunity!
When I was around the age of 25 I would fly on my own from Boston to Philadelphia, get a taxi to the hospital, get a hotel room on my own, and then grab the train back to the airport. I also did this for a medical trial in Tampa, Florida. Tip though, if in a manual chair don’t go to the botanical gardens alone, it’s off-roading and looks like the perfect spot for a surprise alligator attack. By now I was progressing more, my solo travel days were ending. So what did I do? I planned 3 trips with friends, 2 medical and one to Universal. It took me 8 years to decide to document my travels that are accessible to different degrees; I don’t always stay on the beaten path and sometimes visit the more quaint lesser known and less accessible cities. I’m like a female, disabled Rick Steaves. So come on let’s get traveling!! \
Where
As of this moment I have been to 23 states, 9 countries, 3 continents and 1 territory. But I want more. Sounds like a lot but I have a map of the world and you scratch off where you’ve been and it looks like I haven’t been anywhere.
Why
I want to show people, disabled or not that traveling the world can be done; and to inspire others and show them that life is worth living in!
Go big or go home
