When Heidi Hunter was four years old our family of five (Bryan hadn’t come along just yet) moved next to her family on Stafford Drive. The Hunter family quickly became part of our family. Heidi was an adorable, curly haired, fun-loving tomboy. She became best friends with both Chad (age five) and Kelly (age three). Her personality was so dynamic and full of smiling beauty that every kid in the neighborhood wanted to be her friend.
While living in Virginia about eight years ago, a then-24-year-old Heidi started noticing some weakness in her legs and her friends mentioned that she walked differently than normal. During that time she was pregnant with her son Jaiden and after he was born she had a hard time holding him while walking up and down the stairs in her townhouse. After many doctor’s appointments, Heidi discovered she had a disease called Distal Myopathy Rimmed Vacuoles which is associated with Muscular Dystrophy. The onset of this disease usually occurs between the ages of 20 and 30 and starts with weakness in the lower legs, which progressively leads to a steppage gait and has now caused Heidi to wear ankle-foot orthotic braces. Pelvic and femoral muscles are involved later in the disease course, but the quadricep muscles are spared for a long time. The upper limbs (the shoulders, wrist extensors and hands) are affected late in the disease course. Facial muscles are normally spared, along with cardiac and respiratory muscles. The disease progresses slowly, with disability appearing 10 to 20 years after the onset of the disease and patients often becoming wheelchair-bound by this stage.
After Heidi’s diagnosis, her mom Marcy told me she wished she could trade places with Heidi. Marcy wanted to take the pain away from her beautiful daughter. As I go through my illness, I too want to take Heidi’s suffering away. I want to tell Heidi words that will make her feel better. I want to tell her that life is full of joys, sorrows and uncertainties, and how we respond is as distinct and different as every flower. But most importantly, I want to tell her that people are available to help her through her journey and that she is not alone.
I have learned a lot these past few months and would like to share it all with you. My illness doesn’t always make sense to me but I am learning to trust. I always knew people were kind and good but the kindness and goodness that surrounds me and my family is unbelievable. People have always been generous and giving and so I’ve learned to be more gracious and grateful as a recipient, which I’ve found to be harder than being a giver. I’ve learned to love walking hand in hand with a family member or friend and I even let my friend Jill cut my food for me this week because she wanted to help. And last, I’ve learned to try to live in the now and not let my mind go back to what I can no longer do or let my mind wonder to my future. The minute I let my mind wander in the wrong direction, it feels toxic and doesn’t do me or anyone else any good. I’m not sure these things will help you but I will pray that something helps and you get that spirited Heidi back.
Lastly, Heidi, I’ve learned that our disease doesn’t define who we are and the people that love and care about you will prove that to you. I can assure you of that because it has been proven to me over and over and over again.
I love you.
“Every day may not be good, but there’s something good in every day.”