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FARAFARA Cure FA

Beverlee Blackston

Name: Beverlee BlackstonBeverleeBlackston1

Age: 30

Where do you call home? Paducah, Kentucky

Education (degree(s): Associate's Degree in Arts and Bachelor's Degree in Communications and Theater

What is your relationship status? Do you have children? I'm married and have a 3 year old daughter, Freya. I've been married for 7 years.

What's a typical day for you? I wake up around 7:30 when my daughter wakes me up. We watch cartoons and play with her toys until naptime. When she takes a nap I do my Yoga practice and meditate, sometimes I write or practice my divination with Runes or Tarot Cards. When Freya wakes up we have dinner and play until bedtime. When the weather is nice we spend a lot of time outside on our farm.

How long have you known you are living with FA? It's been 10 years since I was diagnosed. December 2007 was when I found out. My husband noticed that something was off so he told me I should go to the doctor. It took awhile, but they finally figured it out.

Are there any others with FA in your family? I'm the only person on both sides of my family that has FA. 

Describe an adaptation and/or transition you have had to take due to living with FA: When I was first diagnosed I had no trouble walking, but after a year I got a cane for long distances. I started using a cane full time about 7 years ago. When I was pregnant and working at Lowe's I used a walker. I only used a wheelchair when I broke my ankle a couple years ago

BeverleeBlackston2What do you like to do to stay active and what type of exercises work for you to stay strong? I have a regular at home Yoga practice that I do to stay strong physically and mentally. I do 20-45 minutes of yoga every afternoon and sometimes before bed. I take walks, with a walker, when the weather is warm enough.

Do you have any hobbies or special interests? I collect crystals to work with. I just started making candles and flower essences. I use runes and tarot cards. I love to write about the synchronicities in my life, my dreams and short stories. I love to read and make music with my MIDI.

What is a good trick to make daily life easier? Try to stay present and out of my thoughts. I try to focus on what i am doing and not what I need to do. Life is easier when you live in the moment instead of dwelling on the past or worrying about the future.

When FA gets you down, what do you think/do to feel better? I do Yoga when I'm depressed. I look around me and see the beauty that surrounds me- my daughter, my husband and the beautiful land. I try to focus on Gratitude when I get down.

What is one way living with FA has POSITIVELY affected your life? It has humbled me. It gave me a challenge, an obstacle to overcome, so that when I do face Death I can see what I've accomplished and overcame even with a crippling disease. Great growth comes from darkness and suffering.

What is a favorite motivational quote of yours? "No one is going to come and save you or heal you; healing comes from within."-Nicholas Blackston OR "Everything is as it should be." Adrienne Mishler

BeverleeBlackston3What is piece of advice that someone with FA has given you that encourages and inspires you? My advice is to pay attention to your thoughts. If you tend to lean to the negative and you have negative thoughts of self-pity, self-hate, etc then you will manifest suffering in your life and your symptoms will worsen. However, if you focus on positive thoughts of self-love, self-worth and gratitude then you will manifest Joy and Peace and your symptoms will seem to get better.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? "Stay present in the moment. Let go of who you were in the past, before the diagnosis, and the plans you had. Let go of fear for the future. Trust the unfolding of your path and know that you are strong enough to get through this if you believe! You manifest what you believe."

What is the first thing you want to do when a cure/treatment to FA is found? Run with my husband and daughter.

"I have FA but FA doesn't have me." What does this statement mean to you? How do you live your life in the face of adversity? It means that I am not defined by FA. FA is not in control of my life. I live in the face of adversity with light in my heart and a smile on my face because I have a great support system and there's always someone who has it worse.

Tell us a little more about you…I'm married to Nicholas Blackston, a Marine Corps veteran, who is an artist and whose story is published in the book Acid Test by Tom Shroder. My story is published as well. Our life story is in the middle of becoming a movie and a documentary. I have 3 cats Skylar, Osiris, and Lucifer.

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About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.
 
Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
 
The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

 

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