I was born with Limb Girdle Muscular Dystrophy type 2D. I was diagnosed when I was about 7 years old. It is a progressive muscular disorder that weakens all of my muscles as I age, starting with legs and arms (limbs) and the girdle area.
2. What was your initial reaction to receiving your diagnosis or to finding out about your health condition?
I was pretty young when I was diagnosed, so I don’t really remember a lot. When I found out, I don’t remember being sad or frustrated. I was just too young to wrap my head around the whole thing. I was walking at that time, so I don’t think I fully comprehended that the diagnosis meant that I wouldn’t be able to walk in the future. I didn’t comprehend the progressive nature of the disease until I was much older.
3. Is your condition progressive or is your health stable? If it is progressive, any comments on how you deal with and adapt to the changes?
My condition is progressive. It definitely is frustrating having to get used to being able to do something, then that ability is taken from you in a month or a year. It is hard having to constantly adapt and problem-solve regarding new weaknesses or changes. Dealing with this is not easy and I definitely have my days where I’ve had it, but as I’ve gotten older, I have become more appreciative and proud of the things that I am still able to do: feed myself, put my own makeup on, type on the computer, cross my leg, etc. When I’m able to do one of these things that is harder for me to do, sometimes I give myself a little mental positive feedback like “Way to go, Michelle” “You still got it!” “Wow, I CAN still do that! Sweet!”
4. Do any of your family members share your diagnosis? If so, how did that affect you? Has it been helpful to have others who could understand what you are/were dealing with?
I have an older brother who is 27 who also has LGMD 2D. He is 3 years older than me. It has been helpful to have an older affected sibling lead the way in regard to college, personal care workers, and other circumstantial events living with MD. I look up to him a lot and it has been reassuring to see him flourish in these different environments on his own. It makes me feel more comfortable and encourages me that I can do the same.
5. Can you please share about your teaching job (children’s reactions, how you handle that or talk about your disability, blessings and challenges, how you modify things to make your job doable while living with MD, etc)?
In 2012, I graduated from North Central University in Minneapolis, MN with a BA in Elementary Education. During my senior year, I spent several months student teaching in a 3rd Grade classroom. My first day at this school was pretty incredible. As I observed the classroom that day, my cooperating teacher sat in a regular swivel chair (due to a knee problem) with a little tablet on her lap and an electronic pen in her hand. She was able to control her computer and project what was on her computer onto a large whiteboard for the class to see with just the sway of her pen on this tablet. I was amazed! That technology in itself gave me loads of confidence as I gradually took over the class. By the end of my student teaching experience, I was able to independently teach all core lessons using this Mobi technology.
Fast forward a couple years later, I am currently teaching 4 and 5 year olds in a Pre-Kindergarten classroom. The first months of teaching Pre-K, I was unsure of how everything would work out, as this was the youngest age I have ever taught. And younger children need more assistance with everyday things that I wasn’t sure I was going to able to give to them. However, as the months passed, the students proved me wrong. They can be much more independent than they lead on or their parents lead on. As I used clearer and more precise directions, they were able to help “Ms. B” put the big curves and little lines back in the handwriting bin, participate in role modeling skits, and many other helpful tasks. Another tool I have been using this past year as an extension of my arms is a laser pointer to help point to different things since I cannot lift my arms up to do it. The kids responded very well to that and thought it was pretty cool. As far as me being in a wheelchair, the first couple weeks the kids had questions about it, but after that they never really asked about it. I explained to them that I use this wheelchair to help me get around, because my muscles are not strong. That usually answers children’s questions, and we move on. It just becomes matter-of-fact to them that Ms. B’s muscles aren’t strong, so she uses a wheelchair. Part of my uniqueness and teaching style that I offer definitely comes from my MD. I use my limitations and my setbacks to my strength. Here are some examples: 1) because I am sitting in a wheelchair, I am at most of the kids height, making it less intimidating for them to talk to me (not towering over the kids), 2) since I need more help with things, I use more of a volunteer/hands-on/student-role-modeling approach. Since I cannot act out certain things or move around the classroom too much, I allow the kids to become more involved and show each other concepts with my guidance. I also have helper jobs for the calendar, weather, snack, etc. They love when they have these “jobs”, 3) My wheelchair comes in handy, not just for getting around, but for entertainment purposes as well! The kids have enjoyed going on little rides on my wheelchair during recess, pressing my horn for cleanup time, and sitting on my lap reading books or watching a movie from a higher-than-the-ground spot.
6. How did your disability inspire you to greater heights or motivate you to work harder?
Unfortunately, many individuals in this world stereotype people in wheelchairs: they smell, they can’t work, they’re not smart, they’re a “Debbie-downer”, they can’t have kids, they don’t get out, they don’t find love, etc. I find motivation to disprove these preconceived notions, because I know them to be a bunch of hooey. I want to bring awareness to others of what it is really like to live with a physical disability. It’s about showing the world that we are determined, we have personalities, hobbies, and dreams, we are courageous, and we still have that enthusiasm for life.
7. Do you live by a certain “motto” (saying)?
I do, actually! It’s “LIFE IS SHORT. EAT CUPCAKES.” Of course, there is the literal sense, but metaphorically speaking I think it is a good reminder to live your life in the present… don’t wait, don’t be fearful, make memories, take chances, enjoy the things that you LOVE, because no one knows how much time they have left in this world. It also serves as a reminder in life to not take things so seriously. Stop worrying, stop stressing about the little things, stop being negative… just let it go. Life is too precious of a gift to waste a large percentage of it on those things.
8. 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?
I know that living with a physical disability can be so frustrating, unfair, lonely, and tiring. It won’t always be easy… it will probably be challenging every day. Take those frustrations to God and trust in Him. From there, find motivation intrinsically/extrinsically, set goals and dreams, do what you enjoy, surround yourself with positive people, and have fun.