- What type of health condition or disability do you have and when were you diagnosed?
I have FSH Muscular Dystrophy. Since my dad has the same disease I saw characteristics in myself from a young age, so I knew I had it too. My eyes do not close all the way, my smile is crooked and I have weak shoulder and arm muscles and no stomach muscles.
- What was your initial reaction to receiving your diagnosis or to finding out about your health condition?
I never had a “shocked” feeling since I knew I had the same disease as my dad. I started having back pain at the age of 14 and that is when the doctor told me it was from having FSH MD.
- Is your condition progressive or is your health stable? If it is progressive, any comments on dealing with and adapting to the changes?
My disease is very slowly progressive. There are times when I feel weaker and require more rest.
- How did your parents treat your disability growing up? Did they expect the same out of you as your siblings, if you have any? How did they help you overcome thoughts or worries, if any, about limitations?
My parents really didn’t treat me any different since we have so many in our family with this disease.
- What has it been like for your family, given that several family members have MD? Do you feel that your shared experience of living with MD has been helpful at all?
I would like to hope that my experience with MD has been helpful to my family. Maybe not so much in what I say, but by my example of the life I live.
- What has your experience of parenting been like while living with a disability? Have you found anything in particular to be difficult and, if so, please share what has helped you in these situations. Do you have any suggestions for other parents who have disabilities?
Parenting has come pretty easy for me. I am fairly domesticated so I have tried to pass those skills down to my boys. At our house the vacuum cleaner is a “power tool”…plugs in and is loud. I have tried to teach them that it takes all of us to keep the household functioning.
- If any of your children have MD as well, what has it been like for you? Do you feel that your own experiences with disability allowed you to support, guide, or comfort your children in a unique way?
Two of my three children have tested positive for MD. My oldest shows many signs at 15 yrs old. My main focus is to keep my boys involved with others with MD so they can see they are not alone and there are unending possibilities for their future.
- How did your condition impact your personal relationships through the years? (childhood, teen years, adulthood, etc).
I did feel like I was different than the other kids and felt like I was sometimes treated like a “weakling”. I did not like to spend the night with other kids because my eyes are open when I sleep and I didn’t like people making fun of me because of it. I always had to do things differently from other people …like holding one arm up with the other to put on make-up and lay on the bed to fix my hair. I didn’t enjoy P.E. because I never could run as far as the other kids or do sit-ups. As an adult there was a time that I was embarrassed about my weak stomach muscles since people would always ask me if I was pregnant when I wasn’t!
- Who has been the biggest influence in your life and why?
My paternal grandmother (now deceased) has been my greatest influence. She grew up during the depression, took care of my grandfather who had FSHD and raised 8 children. She had many adversities in her life, but never complained. She was always thankful for what she had and for her family. She hated that many of her children had this disease, but she bestowed so much love upon them all that none felt different from anyone else.
- Did you ever have a time in your life where your disability caused you to become very ill? How did that time affect you emotionally and describe how it might have strengthened you.
I was in a “gunslinger” brace for 8 weeks after having scapulae thoracic fusion….I was not the most patient person for my family to have to take care of. I realized that losing independence is the hardest thing for most of us to overcome! Thankfully at that time mine was only temporary, but helps me think of what it may be like in the future if I lose my ability to walk.
- How did your disability inspire you to greater heights or motivate you to work harder?
I never wanted to feel different from others so I always pushed myself more. Now that I am older and secure with being different I have put my focus into helping others and giving back to my community in every way I can. I have been a 4H leader and a mentor to young mothers. I am a minister’s wife and a foster parent. I have given muscle tissue for research and have given my time to educate candidates on the positives and negatives of Scapulae Thoracic Fusion Surgery.
- What is the most important factor that has helped you overcome challenges?
In August of 2007 I had Scapulae Thoracic Fusion on my right shoulder. That surgery gave me the ability to raise my arm and function more. I feel like that helped make my days easier and it helped my self esteem.
- Do you live by a certain “motto” (saying)?
The 4-H Motto is “To Make the Best Better”. I have sort of adopted that as my own motto!
- If you were speaking to a young person today with a disability, what advice would you like to give them? What would you like to tell them about reaching for goals and achieving dreams?
There are people with all kinds of diseases….heart disease, diabetes, ADD, ADHD, limb loss and the list goes on. In all reality none of us are so different from the “next guy”. We are all sinners and have our flaws. With the technological world that we live in today I think it is even that much easier to have a career you can love even if you are in a wheelchair. Grab hold of your dreams and make them happen!
- Is there anything else you would like you share about yourself?
We all just have one chance at this life, so make it count! You may be a mentor to people and not even know it!