When I was eighteen years old, I found out I had Muscular Dystrophy, specifically Limb Girdle Muscular Dystrophy Type 2E. I am about to turn 28 and I am still able to walk with independence and also use a powerchair when needed to be able to keep up with the family!
2. What was your initial reaction to receiving your diagnosis or to finding out about your health condition?
I think what I felt the most was relief. I was relieved to have answers as to why I have always walked funny and not been able to keep up…why I now could hardly walk up stairs. It felt manageable. I felt like I could forgive everyone for the teasing because it was something I couldn’t help and now understood why I was different.
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 degenerative, so my ability is ever changing. My weakness for the most part progresses slowly so I adapt in many ways without noticing. Then, looking back, or seeing how someone of normal strength does something, I realize I don’t do it that way anymore. I tell people my Muscular Dystrophy is sweet in a way; it allows me to cope and adjust slowly. My husband and children adapt alongside me, and I’m not sure we notice how it changes in the day to day. It is more when a birthday rolls around or holiday that I look back and see the differences.
4. How did your parents treat your disability growing up or, if you were diagnosed as an adult, you can share how your loved ones? How has your condition impacted your personal relationships through the years, if at all?
We didn’t know about me having Muscular Dystrophy until I was a senior in high school. As I attended my first Speak conference, someone made a comment that made me so very grateful we didn’t find out sooner. I say that because there is a possibility that loving, well meaning parents might overprotect, and I feel that because I was able to try all sorts of things and find out as an adult, I could continue to be stubborn and independent. My neurologist always tells me that I drive him crazy, but keep on being stubborn! My parents let me get my own apartment when I was eighteen and enjoy the opportunity to live completely independently. What a gift. I am so blessed with support from family and friends.
The most puzzling support is from my husband, Jeremy. I explain it as he never reacts how I want him to, but that he has never responded wrongly. My weaknesses, physical included, are a part of me that he loves and accepts. He is not a worrying type of man, he is very much in the present while I tend to be ten years ahead worrying. He never flips out when I want him to, he is calm and cool about it all and I used to find this offensive, like he didn’t realize what a big deal this was, but then I imagined us both freaking out simultaneously and that seems terrifying! Jeremy knew upon us first meeting that I had Muscular Dystrophy. I am so grateful for that.
I feel that it has strengthened family relationships in ways and caused isolation. My mom and sister support each other in carrying the weight of it. I hate that it hurts my family, makes them sad. It can be harder watching others cope and struggle with my health than it is to just do it. For example, my mom watching her daughter struggle and trying to help and cope and support me in this. I have found that people assume that I don’t want to talk about it or they cannot talk to me about how they are coping, and I really wish they would. I am more up front about it, and want people to know that I have it because it explains why I might fall on my face and things. I have had friends not invite me places because they thought it might be too much walking, and it might have been, but I would have wanted to say so. I get to see the beauty in others more than if I were normal strength because I need help and get to see family and friends and strangers jump at the opportunity. In my marriage, I see more of a servant side of my husband and such a sense of oneness that I may not see if I didn’t rely on him in the ways I do. Many impacts both good and difficult!
5. Do you have any children? If so, what ages are they, and can you speak about what it is like to be a parent with a disability? What have been the greatest challenges and blessings? Are there ways that you have had to modify how you care for your children?
I have two incredible tiny humans. My daughter is seven and my son is five. We started our family very young because the doctors said that if I wanted children and wanted to walk, then I should have them as soon as possible. I don’t know what it is like to be a parent without a disability. The greatest battle I have had was feeling like my children (and husband) deserve a mother who can run with them and play tag and ride bikes and such. I devalue the qualities I am able to give and put the things I cannot on a pedestal. I remind myself often that the ways I love people don’t necessarily need my physicality: encouraging, loving, listening, etc. My children are such servant-hearted humans and it comes so naturally because I do need their help and they did have to learn to do things quickly on their own. My children adjusted so well from the beginning as far as climbing up my legs so I could pick them up easier and even now just helping with shopping and household things. This year we decided to try homeschooling for many reasons and one of them being my health. Being able to spend my strong years with them and being able to sleep in together and do school around how we feel that particular day has been wonderful and healthy.
6. If you were speaking to another woman with the same diagnosis who was thinking about her future and having a family, is there anything in particular that you would want to share with her?
Dear friend, you are so valuable. God has given you everything you need for the children God gives you. Your love does not depend on your physical ability, but the space in your heart. Don’t place too much value on making dinner for your husband or tossing your child into the sky. There are loving men who can cook and actually enjoy doing so. Most importantly, when your man tells you how he feels about your disability, believe him. Do not let your own fears of how he may feel about it reign. Call out the lies in your thinking. I have self sabotaged too many friendships because I felt like a burden. They never made me feel that way, but I believed the lies over their words.
7. Who has been the biggest influence in your life and why?
Ohhhh, I have four! Haha. Three are real and one is fictional. They all have the same theme in why they have influenced me so greatly. They did not allow their circumstances to define who they are in Christ, but allowed God to use them and trusted Him so fully! Corrie Ten Boom, Joni Eareckson Tada, Sara Frankl and Katy from the book “Stepping Heavenward.” These women encountered such suffering and yet gave their lives to Him, open handed, and poured themselves out to care and encourage others!
8. 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 have had multiple surgeries and have been diagnosed with an autoimmune disease on top of my LGMD. My breathing is currently being affected by the weakness in my diaphragm. I think as scary as it can be sometimes to know a single fall can take away my ability to walk or that my breathing being affected means it will continue to be affected as I continue to lose strength, I rejoice that as long as I have breath, God can use me. I rejoice that He gives sweet caring humans, so I don’t have to this alone. I rejoice that my heavenly body will not be affected by this.
9. How has your disability inspired, motivated or directed you? How has it helped to mold you into the person you are today?
I was living such a dangerous life before I found out I had Muscular Dystrophy, making poor choice after poor choice. I feel that the kick in the butt to start a family, to realize I am not invincible and constantly be reminded that I am not in control, has helped me become the Lenda I am today. It is a constant reminder that humans need other humans, that humans especially need the Lord. I had a very long road of bitterness at one point in this journey and God has graciously healed me of that more than once. It has shown me how worrying changes nothing, along with complaining. It has made me take more risks, make sure people know how I feel about them, and have a healthier view of death as my mortality is more on the forefront of my mind than it might have been if I didn’t have this!
10. What is the most important factor that has helped you overcome challenges, and cope or adjust to living with your condition?
I think I finally came to the realization that I am safely and securely in God’s hand. He will care for me. I lived in a place of fear for a long time as well- what if Jeremy leaves me, what if I break my leg, what if I die and leave my children, what if, what if, what if…and God reminded me what IS. The realization helped me live in the here and now and the assurance that God is who He says He is. Lord, don’t let me forget it!
11. Do you live by a certain “motto” (saying)?
I don’t know who originally said it and I am going to butcher it, but: [In this life we are all just walking up the mountain and we can sing as we climb or we can complain about our sore feet but whichever we choose we still gotta do the hike. I decided a long time ago singing made a lot more sense.] It just reminds me we have a choice. We can choose to complain or find things to be grateful for, we can choose to listen to truth over our feelings, we can choose to love the hard to love.
12. If you were speaking to a young person today with a disability, what advice would you like to give them?
Oh sweet friend, you are so much more than your circumstances. You can do this. Write down the things you are thankful for and when you are having hard days, bitter days, look at the list, the blessings God has given. Know that things change so quickly, good and bad, so hold onto hope! Choose to sing, to laugh, to see the good in the midst of the hard! Fight for it!
13. How do you spend your time (work, activities, etc.)? Do you have a favorite hobby?
Let me see here! I am currently a stay at home mom and wife, and I homeschool my babes. I love to read and laugh and I love animals and humans! I love the opportunity to encourage someone, to compliment someone. I like to be in the sunshine and enjoy playing board games. I love to swim and by swim I mean stand in a pool, not swim laps! I love being near the ocean and being reminded of how small I am, yet that God loves me! I like to thrift shop a whole lot!
14. If you have attended a Speak Foundation conference please share about what this experience was like for you. How did it impact you? What was the highlight of the conference?
I attended my first Speak conference in 2014. I have never been around more than one person with Muscular Dystrophy. It was unbelievable seeing friends and their families I have only known through the screen. I knew I wasn’t alone, but to actually be in the room with people who really do understand what this feels like, what this is… it was priceless. I was impacted most by a friend who would not let me stay back and pout. I hear your first time can be a bit emotional, hahaha. I cried constantly and laughed even more. It was overwhelming, all the feelings at once! I had a friend I met there who was further along on the weakness scale, if you would, comforting me and encouraging me that I could do this, not to stay back and not go to dinner. That its okay to feel how I was feeling, but keep going. I think it was the first time in real life (not in a book or a show) where someone with less physical strength than I had was encouraging me. A real life, in person Joni Eareckson Tada. Not to say my life is more difficult than the next person, but for this person to know exactly the emotions tied with Muscular Dystrophy and understand much of his own heartache to take the time to encourage and pick me up from the ugly place was incredible. The conference has given me lifelong friends who I text when things are tough and when things are great! I came home with a greater peace that I could do this because not only is God for me and my family is for me, but wonderful people I now know have gone ahead of me and will help me as well! The highlight of the whole thing was definitely the nights where we would all just hang out and laugh and be silly! The reminder that we are all just human beings who love fun and are still those same people no matter what our bodies do or don’t allow us to do. It was so beautiful.
15. Is there anything else you would like to share about yourself?
No matter what weapons and lies Satan uses to try and get me to fall back into the depths of worthlessness and self pity, I now believe I am worth loving, I am lovable, and have much to offer to the Kingdom of God, as he felt it was worth dying for me despite the messes I have made, the mistakes I have made, the hurt I have caused, the things I can no longer do. We all have an encouraging word for someone, a hug, a listening ear. I don’t want to get tripped up again in the slippery slope that is self pity. Praise God and can I get an AMEN?! haha