Meet Christin Haun

Name: Christin Haun

Age: 54

Where do you call home? Broken Arrow, Oklahoma

What is your education degree? Bachelor’s degree in special education

Who do you live with? My parents

What’s a typical day for you? I have a caregiver in the mornings. I do exercises for upper body strength, breathing, and vocal strength every day. Twice a week I go to an adaptive gym to do lower body strength and stretching exercises.

How long have you known you are living with FA? When and how were you diagnosed? 40+ years. I was tentatively diagnosed when I was 14 after being treated for scoliosis. (There was no DNA test at that time). The prognosis was very grim, that I would not live past age 30.

Are there any others with FA in your family? Fortunately, there are no others in my family with FA.

Describe your transition from walking to walker/wheelchair.  I transitioned to a mobility scooter when I started college in order to get around campus better. I began using a manual wheelchair when I was away from home and then began using a power chair full-time about five years ago. I wear air braces to stabilize my ankles and use a sit-to-stand lift for transfers. Since we can no longer do physical transfers, I am limited on the length of time I can be away from home. I use a vent at night to help my breathing, which helps with energy and stamina during the day.

What do you like to do to stay active and what type of exercises work for you to stay strong? I do the exercises suggested by my physical therapist and speech therapist and recently began using a spirometer to improve my breathing habits. I also sing in the church choir, which helps with vocalization and breathing.

Do you have any hobbies or special interests? Anything that requires fine motor control is out of the question now, but I do enjoy keeping in touch with FA friends. I am also serving on the planning committee for the Cure FA Soiree and helping with fundraising.

What is a good trick to make daily life easier?  Getting plenty of rest seems to make everything a little easier. Listening to music or watching a funny movie is very relaxing.

When FA gets you down, what do you do to feel better? I remind myself that I am in better health than so many people and that I am not alone in the FA journey. I talk with friends, listen to music, or find something funny to watch on TV.  A positive attitude on my part seems to help others.

What is one way living with FA has POSITIVELY affected your life? It has given me the opportunity to meet so many great people in the FA community and their families.  

What is a favorite motivational quote of yours?  “Speed doesn’t matter. Forward is forward.”

What is a piece of advice that someone with FA has given you that encourages and inspires you? I don’t remember advice specifically, but I watch how some of my FA friends face adversity and still keep a positive attitude. That encourages and inspires me.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? Learn everything you can about FA, and get involved with the FA community as soon as you can.

What is the first thing you want to do when a cure/treatment to FA is found? Work toward living independently again.

“I have FA but FA doesn’t have me.” What does this statement mean to you? I may have to do things differently to achieve my goals, but FA does not have the last word.

How do you live your life in the face of adversity? Life is a series of problem-solving events and every day with FA brings a new set of challenges. Concentrate on what I can do instead of the things I can’t do. FA is an unwanted, unwelcome intrusion in my life, but that being said,  I can control my attitude.

Tell us a little more about you…. I graduated from college with a teaching degree in special education. For a few years, I worked with preschool-age children.  Now I devote my energy to holding on to my physical abilities as long as I can, and sometimes that is really hard work.

Did your diagnosis impact your friendships and relationships? If so, in what way? Indeed! Many people are sympathetic, but don’t have the patience to deal with wheelchairs and “hard to understand” speech. Being a caregiver can be hard work, but there are true friends who are there to listen, to include me, and to help me accomplish all that I can. 

What do you wish the general public understood about FA or disabilities? Disabilities are not contagious! Don’t be afraid to interact and to treat persons with disabilities as the important human beings they are.

 

Interview by
Andrea Kiess