Name: Elizabeth (Liz) Anne Clark
Age: 36
Where do you call home? Worcester, Massuchusssets
Education degree(s): I have a bachelors degree in business w/ a concentration in accounting from Nichols College in Dudley, MA. I have a blog where I talk about parenting and be a woman with FA, www.accessiblevillage.com. I try to live my life being an advocate for people of all abilities and I hope to be a writer who incorporates disabilities in my writing.
Who do you live with? I am married for almost 7yr. My husband works fulltime for the MA State Police he also has a disability, a TBI. I have two sons 17 and 4. The 4 of us live in a house with an in-law apartment where my sister lives with her wife and son, a total of 7 people.
What's a typical day for you? I am a stay at home wife and mother.
How long have you known you are living with FA? I was diagnosed in 2001 after my 18th birthday. At my high school graduation, my mom noticed some serious balance issues. At Boston's Children's Hospital, they ran the whole hoast of tests including an FA blood test.
Are there any others with FA in your family? No, no one in my family that I know of has been diagnosed with FA. Some people in older generations are now suspected of having had or have FA.
Describe your transition from walking to walker/wheelchair. I went from walking unassisted to using a walker within five years of my diagnosis. I attended college in the fall of 2006 with my walker. In January I used my walker still but also began traveling everywhere with my since passed away service dog Winston(a black Lab). In December of 2009, I became a full - time wheelchair user, so in 8yrs I went from walking independently and driving, to a fulltime wheelchair user and voluntarily choosing to stop driving.
What do you like to do to stay active and what type of exercises work for you to stay strong? Under normal circumstances I go to a gym regularly with my older son. I try to go to outpatient PT as often as I can. At home, I maintain my pt exercise, and with the help of my sister and son, I walk a little with a walker and practice doing the stairs. I also have been doing laps up and down my wheelchair ramp in nice weather to build strength and stamina.
Do you have any hobbies or special interests? I love to read. I belong to a book club. I read 52 books in 52 weeks last year. I also like coloring adult coloring books. Being a Mom. I love blogging and talking to all different people.
What is a good trick to make daily life easier? Life with FA is really hard. I have worked to make me accessible to me. Ramp, role in the shower, grab bars everywhere. Finding what motivates you is a good trick to make daily life easier, for me, it is my sons. I want to be strong and do my best for them.
When FA gets you down, what do you think/do to feel better? When FA gets me down, I Blast music, and clean/ organize.
What is one way living with FA has POSITIVELY affected your life? FA has taught me to appreciate life and the little things.
What is a favorite motivational quote of yours? "What if I fall? Oh, but my darling, What if you fly?"
What is piece of advice that someone with FA has given you that encourages and inspires you? I was told by a person to switch doctors to Dr. David Lynch in Philadelphia. Now I understand FA and am able to connect to my community more.
What is the best advice YOU could give to a person who has been newly diagnosed with FA? I would tell someone newly diagnosed with FA to connect with others as soon as possible, other FAers, FA events, your local Independent Living Center, and start obtaining different resources.
What is the first thing you want to do when a cure/treatment to FA is found? If I was cured the first thing I want to do is stand in a hot shower with the door locked and enjoy my independence.
"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? This statement means to me that even though I have a disability, I am still a person with a family and interests. FA is only a piece of me as a person.
Tell us a little more about you..... I would love to connect with more FAers as a parent, wife, woman, etc.
