Embracing the journey with LGMD
There is an art to living with LGMD. Those with the disease, and the people who love them, must continually reimagine how to live with grief and loss. Katherine, 42, opens up about how she meets the emotional challenge of life with limb-girdle muscular dystrophy.
“I must have gone to like six or seven doctors and they all thought I needed knee surgery. I knew it wasn’t my knees because my arms were affected too. My family thought I was crazy. My friends thought I was being lazy; but I knew something was wrong. I remember one time after a five-mile walk I could barely leave my bed for a week. Nobody could understand what was happening to me.
I started to feel the weight of the not knowing what was causing my fatigue. I knew something was wrong but to others it looked like a deep depression. It was a very complicated time in our lives. My husband and I both realized we needed help navigating it. We sought counseling. Therapy has helped us learn how to communicate with one another more deeply, to empathize with one another. I feel so tremendously grateful to my husband for loving me as deeply as he does. I would not be able to do any of this without him.
When I was officially diagnosed with LGMD2D in my early 30s, I went into a resistance, a depression, a denial. There was certainly relief in knowing what was happening, but there was also this deep heartache. I’ve always been a dancer, and for a moment, I did feel like my life was over. Ultimately, I allowed myself to experience all of those feelings and find my own way out—through reading and looking at pictures of others living their life and wanting to live my own life. It wasn’t until I started meditating, however, that I found a sense of peace and presence.
When I first started meditating, I didn’t even really know what trauma was. Then I met my spiritual teacher and through him I came to an understanding of trauma. My breath has become my best friend. My breath has become what helps me ground and stay in this moment instead of letting my mind focus on what could have been. Meditation has taught me how to gently let go and focus on what I can do instead of what I cannot do.
I remember when my doctor recommended I get a wheelchair. I had so much resistance to the idea. I was afraid of being labeled ‘handicapped.’ Then one day, my husband and I were walking home and I fell. We walked one more block, and I fell again. I knew in that moment that I needed a wheelchair. I was done falling. Once I got the wheelchair, I was able to live life more, to be more independent.
I found a way to dance through drawing. I would draw and draw and draw. When my hand became too weak to draw with the precision I wanted, I started to sing. I’m still singing. Also, as a deeply emotional, physical human being, I miss and long to be able to massage and scratch my husband’s back, but we still manage to find really beautiful moments of intimacy. The longing for activities I could once do is still there sometimes, but when it happens, I allow myself to feel, grieve and mourn. Emotions lose their control over you when you process them.
If I had known then, when they first told me I had LGMD, what I know now, I would have understood that life isn’t over with diagnosis. I would still travel. I would still see the world. I would still have incredible conversations with others. I would have known that people were still going to love me, still going to accept me, still going to want to know me—and that I would still have so much to offer.”
Katherine and her husband, Max, married in 2006 about five years before she was diagnosed with LGMD2D. They are life partners and travel companions, and navigate the LGMD journey together, hand-in-hand.