Under the right circumstances, when I am not fatigued, when I wear orthortic bracing, and and when the ground level and firm, I walk well. Perhaps a casual observer would not know that I have any difficulties. It turns out, however, that I no longer walk well on the beach.
Last summer, we took our children to the beach on a beautiful, warm, sunny day. I learned that with the sand shifting under my feet, my balance suffered. Worse, the bones in my feet that have been displaced by CMT were not held in place, and walking on the sand caused intense pain. I could barely follow my family across the beach. Afterwards, I experienced increased difficulty and pain in my feet for several days.
If I let them, my thoughts go into the future. What of the trips that I would like to take someday with my family? My beach days appear to be over. I grieve over the loss of the future fun times that I might never have with my family.
With a neuromuscular disease such as Charcot Marie Tooth comes loss. With loss, comes grief. Dealing with changes in my abilities as this disease progresses sometimes feels much like walking on the shifting sands of the beach. While I cannot change the fact that I have a neuromuscular disease, I choose to handle turn to G-d for my strength and for healing from my grief (see Nehemiah 8:10).
My writing has helped me to come to a place of healing and peace. Through gratitude journaling, spiritual journaling, and sharing my writing through this site, I have moved from despair into acceptance and growth.
I believe that there is a reason that I have this disease, that this is not random, but a part of G-dís plan for my life. I focus on the good that I may be able to do for others. Through facilitating a support group, participating in advocacy work, and writing , I have been able to help others. And, in serving others, my own heart has been softened. My relationship with the L-rd has deepened and my trust in Him has grown. I find joy through depending upon Him to be my strength, and my fear grows smaller.
Garcia, Kathy. Gratitude Journals. BellaOnline.com website. http://www.bellaonline.com/articles/art54164.asp . Retrieved 1/20/12
Lorig, K., et al., (2006). Living a Healthy Life with Chronic Conditions (Third Edition). Bull Publishing Co.: Boulder, CO.
Kubler-Ross, E., and Kessler, D., (2005). On Grief and Grieving. Scribner: New York, NY.
Reijonen, J., (2010). Keeping a Gratitude Journal. BellaOnline.com website. http://www.bellaonline.com/articles/art171318.asp . Retrieved 1/20/12.