Meet Anita Gracey

Name: Anita Gracey

Age: 52

What is your education? I have a second-class honor degree in Social Administration & Policy at Ulster University.

Who do you live with? My cat and sometimes a lodger.

What’s a typical day for you? I employ a Personal Assistant through a UK-wide government scheme called Direct Payments every morning. She/he would support me by assisting me out of bed, showering, light exercise, preparing meals, household chores and attending appointments. I try not to eat after 6pm or snack in a bid to monitor my weight. Sometimes I need a power nap during the afternoon. I fill my time with hobbies.

Once a week I would do online grocery shopping; I attend classes in poetry writing, yoga, as well as Zoom classes in dance exercise and meditation.

Monthly, I attend Ataxia Foundation Ireland meetings as a trustee. The AFI motto is ‘by members for members’ — this means I run a creative writing class on Zoom for members as well.

How long have you known you are living with FA? When and how were you diagnosed? My sister was the first to show symptoms. It took a while to diagnose, and other conditions were considered before Friedreich’s Ataxia was confirmed. I suspected that I did too from 12 years old. My coordination at handball was the first giveaway. No matter how much I practiced, I just couldn’t get beyond three-ball, unlike my peers. I remember a blur of rainbow colours when they played against walls.

I grew up in an era where you didn’t talk about the ‘elephant in the room,’ so we didn’t talk about it as a family. I guess it was too enormous to confront. The enormity of it didn’t hit me for years because my siblings developed it first and I knew you just dealt with it as best you can. It was very slow to develop. During my teens, most people didn’t notice anything, but I did because I wasn’t good at running and skills like cycling fell to the wayside (literally). People thought it was because I was smaller.

Towards the end of my school years, a teacher noticed I was particularly slow at taking things down from the board — it affects handwriting. After my writing, my walking was affected. It makes you unsteady on your feet, so I was sometimes accused of being drunk when I was sober.

I wasn’t formally diagnosed until I was 18 years old.

Are there any others with FA in your family? Yes, one older sister and two older brothers. Also, a second cousin who lives in America and is active with FARA.

Describe your transition from walking to walker/wheelchair: I was using a rollator for a few years. When I had the flu, I was in bed when someone phoned to tell of the twin towers collapsing. I couldn’t take in the horror, so I used the wheelchair to get to a TV. It was the first time I used the wheelchair in the house, so 9/11 is my ominous date. Using the chair made it much easier for me to get around and helped me stay on top of things, as I was a lone parent and employed. Looking back, I had a three wheeled rollator. I’m sure if I had one with four wheels, I would’ve stayed on my feet longer. Now I must use the wheelchair all the time.

What do you like to do to stay active and what type of exercises work for you to stay strong? Once a week I do yoga, as well as Zoom classes in dance. Occasionally I push myself around my house, so I keep moving for 30 minutes. I have dumbbells as well, but to be honest, they collect dust most of the year. I started doing exercise to relieve aches and stretch unused muscles. I find it benefits my mental health, too.

Do you have any special hobbies or interests? I write poetry, I’ve a pen friend on death row, I run a book club, art galleries, theatre, reading, sudoku, eating out, cinema, meditation, yoga, and I’m a lifelong fan of Bruce Springsteen.

What is a good trick to make daily life easier? Set yourself achievable goals. Even small things count — could be cleaning out your fridge, doing a crossword, or exercising.

When FA gets you down, what do you think/do to feel better? Play Bruce LOUD – drown out those negative thoughts!

What is one way living with FA has POSITIVELY affected your life? I think that having FA has given me more opportunities. I went to university in my 20s, which I’d probably never have done. If I’d been able-bodied, I would have left school, got a job, and got married. Instead, I discovered that higher education was something I would love to do — and could do. And I think I enjoyed university more because I was that bit older than a school leaver.

What is a piece of advice that someone with FA has given you that encourages and inspires you? Your brain is a muscle too; keep it busy.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? In life, take risks! You’re going to mess up sometimes, but that’s okay. Sometimes it’ll pay off in abundance.

What is the first thing you want to do when a cure/treatment to FA is found? Go to an outdoor music concert and dance and sing and dance some more! I am grateful that this offer of treatment is on the market. But I do ask, will this opportunity ever come to Ireland? If it does, at 52, will I be seen as too old?

“I have FA but FA doesn’t have me.” What does this statement mean to you? FA is a part of me. Ataxia may be in my tissue, my voice, my eyes, but not in my intellect, my emotional being, and my soul.

How do you live your life in the face of adversity? I don’t think too far ahead; that is overwhelming. I think about now.

Tell us a little more about you… I am a lone parent, and my beautiful son is going to have a daughter in June 2024. The next chapter of my life is going to be amazing. I’ve been lucky to see Bruce in concert at least 20 times, probably more. I’ve been published over 60 times in poetry anthologies.

Are the healthcare providers in your town familiar with FA? I used to carry a booklet to medical appointments with me to help bridge the gap in their comprehension. It’s improving.

Is there support available from the healthcare system? The National Health Service NHS was once lauded as the best health service worldwide, but it has been run into the ground by successive budget cuts and lack of investment.

If I were traveling to your country to visit, what tips would you give me about your favorite attractions, activities, etc? Bring a raincoat and sunglasses! It rains a lot, but there’s sunshine too. Belfast is small and easy to get around and see the sights. Attractions include the Black Taxi Tour, the Titanic Museum and the Ulster Museum.

Do you know anyone else in your country with FA? If so, have you ever met them? I live in Northern Ireland, so I have the benefit of being able to attend services in Ireland and the UK. Through Ataxia Foundation Ireland and Ataxia UK I have made many friends of my peers. It is a rare condition, and therefore isolating. As life evolves, people may just want someone to talk to, while at other times may need more practical solutions. Having pursued help and support, I would encourage others to do the same.

Did your diagnosis impact your friendships and relationships? If so, in what way? Diagnosis means a fear for the future. Some people with FA will limit themselves as they don’t want to ‘put anyone out.’ Others will wrap themselves in cotton wool and become institutionalised in their own home. I’ve felt both at times. Nights out have been denied me, as people don’t want to assist me on the toilet. Holidays I’m not invited on, as people see me as an inconvenience. I can’t buy tickets in advance, as countless times, there is no accessible transport available.

Life should be about celebrating just living with others. Whether meeting old friends, making friends with strangers — it’s laughing, laughing and laughing some more.

What do you wish the general public understood about FA or disabilities? Every day I must fit in with ‘normal’ life. I remember having to meet with a teacher in a storeroom whilst other parents met in an upstairs classroom. I was employed in a responsible job about which someone once said, “sure, it gets you out of the house.” So, yes, I face barriers in this mainstream world with peoples’ attitude towards me being the most difficult to overcome.

Has FA had an influence on your course of study or work? If so, in what way? No doubt I chose Social Policy because I identify with the downtrodden. I would love to be on a level playing field with everyone. ‘Walking people’ (my son’s term for the able bodied when he was a child), I feel, are the different ones, compared to us ‘sitting down’ people (again my son’s term for people with disabilities when he was a child). I believe using social policy effectively would raise the standard of living for an individual and he/ she could contribute to wider society.

I worked for Leonard Cheshire, an organisation which provides care and support services for disabled people across the UK. As a mentor, I worked one-to-one with people and, as a facilitator, I worked with small groups. It was very rewarding, but fatigue meant I retired on medical grounds.

Are there any modifications that have made it easier for you to pursue your education or work in your job? Driving a hand-controlled automatic car offered an array of employment opportunities.

What is your favorite part of your education or work/career? As a poet, being published in print and being able to set down the book as a concrete object. I hope somebody somewhere will be enriched by it.

What is your favorite part of being a parent? Our wee chats, especially on weekend mornings when we could take our time.

Did you know you had FA when you became a parent? Yes, I was walking, but not steady. My then boyfriend was tested to make sure he wasn’t a carrier of the defective gene. Thankfully, he wasn’t.

What’s one piece of advice you’d give to other (or soon to be) parents with FA? For expectant mothers I would say eat healthy while pregnant, as it’ll help with weight gain. Also, breastfeeding is easier than having to sterilise/make-up bottles. A third piece of advice is get access to a car, it makes life so much easier.

How long have you had your hobby/special interest? How did it start? Why is it important to you? Since retiring from work I enrolled in a creative writing class and found a new love. So much of disability is what you can’t do; well, this is something I can do. It would be a dream to have a collection published.

What is your favorite movie or book? ‘The Hobbit’ by J. R. Tolkien is my favorite book.
‘One Flew Over the Cuckoo’s Nest’ is my favorite film.

If you could live anywhere in the world, where would it be and why? My mother grew up beside Emy Lake in Monaghan and has many positive memories. The people are so welcoming.

A fictional place is The Shire with Bilbo Baggins — I love the circular architecture of his cozy home and the laid-back lifestyle, with several meals a day.

Are you a night owl or an early bird (do you prefer staying up late or waking up early)? Bit of both, I guess. It’s the early hours right now as I type this for FARA ambassador Brona. But in the morning I also woke up with a poem ready to be written down, as if I’ve been dreaming about it in my sleep.


Interviewed by
Brona Kearney