Meet the Community – Rina

ame: Rina (like Rihanna without -han-)

Age: I’m like 15……with 20 years of experience!

Where do you call home? I was born in Albania, I moved to Italy when I was 12 and have been there since, but I’ve always wanted to live in Boston. So, I’d say Earth, or at least Western Earth..haha.
A home is a place where you can get accepted for who you are, and where you can feel comfort, convenience, and ease. Some place where you can create a habit and stability being around. When you have FA, any of these things are very difficult to find, but home is a place where they are not impossible to find, and/or you can construct them. Until now, I have found such a place in Italy, more than anywhere else I’ve been to, so Italy is my home.

What is your education? What is a current goal you have with your education? I have a high school degree. I attended university, but I didn’t finish 4 exams and didn’t get my graduation (or haven’t yet, I hope I will someday).

Who do you live with? I live with my parents.

What’s a typical day for you? I wake up at 7–8 a.m. and do a little physiotherapy on my legs. Then I get up and get ready to go. Since 2021, I’ve been attending a day center for psychophysical disabilities (not sure what psychophysical means, but the users are: people with down syndrome, autism, epilepsy, etc.) from Monday to Friday. Started there with the program of inclusion of the disabled at work, the program finished but I continue there with another personal program, let’s say as a volunteer. So, I “work” there.

How long have you known you are living with FA? When and how were you diagnosed? It all started when I was 7. I began with pain at the extreme bottom of my chest that my parents thought was the stomach. After a year, that doctor looked a little up the stomach and told my parents to take me to Tirana, the capital of Albania, because, as he said, my heart was swimming into water. I had pericarditis. The cardiologist tried several times to take out the water with syringes on my chest. Of course, now I have hypertrophic cardiomyopathy.
Then my first neurologic problems showed: balance deficiency, problems running, and problems walking. Some doctors from Austria, it was the late ’90s, said, “we can’t do anything for her, she can’t be cured, she needs a DNA test, but we think she has FA.”
DNA tests couldn’t be done in Albania at the time. Therefore, we moved to Italy and found out it was FA.

Are there any others with FA in your family? No, just me. Of course, my parents are both carriers, so is my brother. I am the only one with FA in my immediate family and among my relatives.

Describe your transition from walking to a walker/wheelchair. I will never forget high school; it was good because it shaped me as a person. I learned I could trust people –– if not all, at least some of them. And I could choose how to do that, and in what way.
But it was also a terrible period because my disease was shaped too. FA does never have a final “shape,” you always get worse and worse, but it went to a point I could never go back: wheelchair time came.
High school lasts 5 years in Italy. There was no high school in my village, so I had to go to some province nearby, like 15-20 minutes by bus every day. Then students had to walk another 10 minutes to arrive at school. And my class wasn’t on the ground floor but on the first floor with stairs. 1st year: no problems. At the end of the 2nd year, it was really difficult, I was always late…the walking and the stairs. On the first day of the 3rd year, I went upstairs to find out that my teachers had moved my class to the ground floor, they had just forgotten to tell me. 4th year I used crutches, even for that little space, from the car to the class. 5th year, I was 19, my father took me to school now, we finally had a car, I had to use a wheelchair, couldn’t do it even with the crutches anymore.

What do you like to do to stay active and what type of exercises work for you to stay strong? I like going out, but I also like to be alone sometimes. I like to be with one person or two, otherwise, I can’t hear well. I also like to go to quiet places if I have to listen to or talk to the other person, otherwise a discotheque would be perfect!
For the exercises, the ones that work the most for me are those where I can move my muscles actively, not only passively. Trying to stand up so that I can feel the load of my body on my legs, having my bottom back free, not leaned against the wall.

Do you have any hobbies or special interests? – Psychology: I follow lots of psychology channels online, on YouTube. I am so sorry I didn’t study that subject. – Children. I love kids. I love talking to them, joking with them, and playing with them.

What is a good trick to make daily life easier? Choosing not to be completely aware of how I would look into other people’s eyes. I know I don’t look good, or even just ok, with my clumsy and insecure movements, and I don’t like my voice. In spite of that, I try to behave, in reasoning at least, like a normal person.

When FA gets you down, what do you think/do to feel better? I’m not sure if I can answer that because I don’t know if I have found a way. Sometimes I rely on psychology, letting go, I cry hoping that I’ll feel better later. Sometimes, when FA gets me down, first I think “how is it possible that I can’t do anything for myself to have a normal life, a normal control of my body,” so I start doing more of the exercises that I might usually do. It feels like I have an urgency to do something for myself.
The best thing is to do some exercises to feel the weight of my body on my legs, as proof that my body is still with me, and I can continue hoping and trusting in the future.

What is one way living with FA has POSITIVELY affected your life? I’ve met different realities at the day center I go to. In fact, there, there are people with disabilities much different than mine: people who need help in understanding simple things, people who can’t express themselves in long discourses. Sometimes, I feel like I’m in the middle of people with disabilities and operators/educators, because I can express concepts to social workers and educators that other disabled don’t or can’t, I feel near to disabled because I have a disability, a heavy one if I might say, but also near to operators and educators because my mind works well –– even better sometimes, because I cannot believe that social workers and educators don’t understand some things, haha.

What is a favorite motivational quote of yours? “If you wanna do something, do it well” –– I invented it! This quote hasn’t always helped me, because I can’t always do things properly, but it has helped me at giving my best.

What is a piece of advice that someone with FA has given you that encourages and inspires you? Always keep your body active with exercises, they will help you feel better.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? I have two pieces of advice (parents don’t hate me!):
– Live your life as if you didn’t have FA: don’t let FA stop you, live as many experiences as you can while you can, don’t say “no, not now, maybe later or tomorrow.” Tomorrow you may not be able to anymore –– this is the hard truth, unfortunately.
– Listen to your parents, but also…don’t. They love you and will always protect you, even excessively. Don’t let them inhibit you, just because they feel fear for you. You have FA –– now it’s time to grow up fast and make your decisions reasonably.

What is the first thing you want to do when a cure/treatment to FA is found? I want to see and feel the sweet taste of when my long pants move on the shoes on my feet while I’m walking (I know it’s difficult to understand this description, but some FAers might get what I mean!). I want to go swimming and feel the pleasant touch of the waves.
I’ll hold and hug babies. I want to take care of babies and children (maybe not all of them, just my nephews and/or nieces. Not by being their babysitter but being part of their lives).
Ok, too many first things to do. What should I do first? I don’t know, but whatever it is, it’s gonna be unforgettable️!

“I have FA but FA doesn’t have me.” What does this statement mean to you? That I can still do some things, regardless FA. I can still have a life.
FA really slows me down, and it really denies me many things, but it can’t deny everything to me, not every joy and not every laughter. I am a person, FA is a burden that I carry, that’s why FA can’t have me.

How do you live your life in the face of adversity? Trying to stay positive and occupied, concentrating on general problems of the family, of work. For example, the center I go to, –– even if it’s not a real job, I still go there to do some work, I don’t go there just for fun. To tell the truth: I have fun there, only when I’m working. In general, I think “work is fun, and fun is work”

Tell us a little more about you: Sometimes I feel I’m a bit like Charlie Chaplin, I always try to tell things, even sad things, with laughter and light-heartedness. Children taught me that, and my brother. We were both teenagers when he said: “Rina, you should always smile, even when things are extremely sad. If you look up well, you will always find something to smile or laugh about.” My brother doesn’t know this, but I do always keep that in mind.

Are the healthcare providers in your town familiar with FA? Some more than others.

Is there support available from the healthcare system? Yes, there is.

If I were traveling to your country to visit, what tips would you give me about your favorite attractions, activities, etc? Italy is a beautiful country, there is so much to visit. Even streets, everywhere but also in the country centers, are becoming more and more accessible and comfortable. There is also an application called MindInclusion, which should give information about accessibility.
Personally, I love Verona, but the streets aren’t the best for wheelchair users.

Do you know anyone else in your country with FA? If so, have you ever met them? Yes. I have met some of them in reunions that have been held for research in FA.

Did your diagnosis impact your friendships and relationships? If so, in what way? Of course. I think I can’t keep a friendship because I’m not interesting, above all, with the wheelchair and my slow speech. And if people act like they’re interested, I think they’re just forcing themselves to be interested or to be listening to what I’m saying. It’s very rare for me to feel accepted.

What do you wish the general public understood about FA or disabilities? Even if I have FA, I’m still a person, with all the characteristics of a person. I can’t be the sum of symptoms. My disease cannot define me, it’s not my default value.
And I hate being treated as if I have all the disabilities in the world. There are so many things I can’t do –– don’t give me others. Or at least wait until I really can’t do them.

Are there any modifications that have made it easier for you to pursue your education or work in your job? Cellphones. Anytime I have to write an email or something on the computer, I write the text on the cellular first, because the keyboard is so much easier to use. Also, I can move it close as much as I want.

What is your favorite part of your education or work/career? University, I wish I had finished it!

How long have you had your hobby/special interest? How did it start? Why is it important to you? Children since always. I think I’ve taken after my mom; she loves kids too. Babies give me joy. The laughter of a toddler is very contagious.
Psychology. I think since high school, when we were studying Freud in philosophy. I prefer Adler anyway. I think that psychology, maybe psychotherapy more than any other, is the only field where I could succeed regardless of FA, without the intrusion or interference of FA.

What is your favorite movie or book? Favorite movies: Little rascals (Alfalfa 1), Idiocracy (I cried watching Idiocracy the first time, was worried humanity could really go so dumb!)
Favorite book: The Power of Moments.

If you could live anywhere in the world, where would it be and why? Boston. I don’t know why, maybe because I was told that Boston used to be the most European area in the US. So, I’d be in the US, but because it’s Boston, I wouldn’t miss Europe too!

Are you a night owl or an early bird? I’ve been told that the morning rays of the sun are very important for the body. Of course, I don’t know what those rays are, because I have always been a night owl!