- What type of health condition or disability do you have and when were you diagnosed?
I have Facioscapulohumeral Muscular Dystrophy (FSH). This disease has been in my family as far back as my grandfather. My father also had it and when my grandfather had it, they really did not know what muscular dystrophy was. I knew I had symptoms such as arm weakness, shoulder winging, and difficulty running, but did not receive an official diagnosis until I was almost 30.
- What was your initial reaction to receiving your diagnosis or to finding out about your health condition?
I always knew I could have FSH MD, but for some reason, I thought I could beat it or do things that would prevent it from being as severe as my dad’s condition. When I was first diagnosed, I thought, well, I am in great shape and this doesn’t affect me so badly. Not too long ago, I was thinking that I never thought “I” would end up in this condition.
- Is your condition progressive or is your health stable? If it is progressive, any comments on dealing with and adapting to the changes?
This disease is progressive. It will be stable for a while, and then you notice small changes or days when things just seem off or off kilter.
- You mentioned that your father also had FSH MD. Was it helpful to have a parent who also had MD and could understand what you were dealing with?
How did your parents help you overcome thoughts or worries, if any, about limitations? Do you feel that the shared experience of several family members living with MD has been helpful at all?
My dad had this and always provided for our family, so I knew I could too. However, I always thought that perhaps it would not be as severe as his condition. I thought, oh, I wont be that bad, but it looks like I am going down the very same road as him. For some reason, we thought this would play out in generations to come. Its funny, some family members have it and some have no signs of it. It has been helpful because you know you are not alone and you learn what works for one will probably work for the other.
- Have you found anything in particular to be difficult in terms of parenting your daughter and living with a disability and, if so, please share what has helped you in these situations. Do you have any suggestions for other parents who have disabilities?
Yes, it is difficult because I don’t have the energy level that I once had. I wish we could have gotten our daughter earlier in life but it was not God’s plan. We are blessed with her and we try to do things together as much as possible. While I can still walk and get around, we are going and doing things so that she will have the memory of me walking. I would suggest that you just find things that you can do together. Spend quality time together. Reading, watching movies, playing board games etc. Please know that you will love your children, adopted or natural, no matter what your condition, and they will also love you. My greatest fear is that my daughter may ask, why did my dad have to have MD? So I want to have as much fun with her and make as many memories as I can. This is unconditional love that is spoken about so often.
- How did your condition impact your personal relationships through the years? (childhood, teen years, adulthood, etc).
This is the most important message that I would like to share. When I was in high school I was so embarrassed about my posture and shoulders that I never shared that I had muscular dystrophy. This was a big mistake because people just thought I was in my own little world or a little withdrawn. Teenagers are more caring and very smart these days and they do care about each other. They may not want to admit it but they do. I am not afraid to tell people anymore that I have this because it seems to open doors and break down barriers.
- Who has been the biggest influence in your life and why?
My dad, because I saw him go from a young healthy dad to a dad that was confined to a wheelchair and all along the way, he never complained. He found the best in every situation and he had a great sense of humor. Like us, he fought to stay mobile. He did everything he could to lead a normal, healthy, and productive life. I saw him plant a garden each year from a scooter. I saw him hoe from a scooter and I saw him harvest from a scooter.
- 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.
The only time that I was affected was when I had tendon transfer surgery on my right foot. This was to keep me from wearing braces. At first, we didn’t think it had worked…but I had a wonderful physical therapist who would not give up and my foot started to have movement and it got better each week. At first, I was very depressed because I thought I had possibly gone through so much pain for nothing, but then it worked!
- How has your disability inspired you to greater heights or motivated you to work harder?
I still work a full time job and the people that I work for and with do not have a clue how my back hurts and how tired I am. They do not realize that I only have a certain amount of energy each day and that is it. Also, knowing that my grandfather, dad, and others in my family have led productive lives (never complaining) has enabled and empowered me to increase awareness and help raise funds through the MDA and FSH Society.
- What is the most important factor that has helped you overcome challenges?
I have overcome challenges through the Lord. I am thankful that the Lord gives me strength and I want to use this disability to help others. I want to show others that you can do things, you can help others, you can lead a productive life. You just have to find ways. At first, I didn’t want anyone to know I had on leg braces, but now I wear shorts because the braces are so hot. It doesn’t matter what people think. At least I am walking.
I will never forget that this little boy asked me about my braces and I said, “these help me run and walk,” and he said, “I want some of them!” Then his mom told me that his dad had his leg amputated and he still plays soccer. So I came to realize if it’s ok in the eyes of a child, it’s ok with me.
- You became involved with the FSH society and fundraising. What kind of involvement do you have and what has this experience been like for you?
I have met some wonderful people through the FSH Society and am very close to them because we share so many similarities in life.
- You have also attended our first and second annual summer conference. Can you share about the conference and what these experiences have been like for you?
The Speak Foundation and those that make it up are family as well. These organizations all have so much to offer and they teach us real fast that we are not alone in this world.
- Do you live by a certain “motto” (saying)?
“Whatever my lot, thou has taught me to say it is well with my soul.” I feel there was a reason that the Lord chose me to have this disease and he wants me to reach deep into my soul and say it is well and I can help others.
- 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?
If you want to do something, don’t let anyone tell you that you can’t! If you have a dream, go for it. I recently heard a story of this FSH patient who wanted to be a doctor and that is what she dreamed of doing….but someone told her that she couldn’t physically do it….she was devastated until this came up at a FSH conference and there just happened to be a doctor in the house (room) and he about lost it! He told her she could be a doctor, just maybe not an emergency room doctor because of doing CPR, etc. Just plan ahead and consider that as time passes that your limitations may change.
- Is there anything else you would like you share about yourself?
The Lord blesses me with wonderful days. I feel that if I have reached out to at least one person a day I have done something for my soul and I have this feeling of accomplishment and just an all around good feeling the rest of the day. I have a desire to try to make people feel good about knowing me. When I die I want to be remembered for helping others not because I had a disability.