A woman copes with the effects of a progressive neuromuscular disorder. Despite disability, she lives each day of her life with grace and courage.
Michelle, I know you are scared about what will happen, but I wrote this with you in mind; and I wanted to let you know that you are in my prayers, and I have people praying for you. I hope this story brings you a sense of hope and comfort during this scary and uncertain time in your life, and I want you to know that I am thinking of you today.
Tana Lalaine Durcelle is my name. I am 24 years old, but at times I feel so much older, especially when my body doesn't do what I want it to do.
I have limb-girdle muscular dystrophy, which was diagnosed when I was 22, two years ago; and I have had to learn to put my once active lifestyle on hold and live with worsening disability, fear, and the stigma that often goes with having a disability. But I have managed to overcome all the fear-filled days of wondering what was going on with my body and why it was happening, the initial tests and then the life-changing diagnosis; and then having to learn to live with a disorder that would in time get worse. I have trouble walking and now wear ankle braces to help stabilize my feet, and use two Lofstrand crutches to further help my wobbly sense of balance; and for longer trips, or on bad days where I am weaker than normal, I use my electric scooter. Sure, it is NOT easy at times, knowing that the future is still rather cloudy, in terms as to what direction my disease is going to go; but for now, I have a very happy and rewarding life, and I have learned to trust in God and rely on him when things get tough.
I have had to move to an apartment complex for disabled people like myself, and I have made many wonderful friends; and I also have found a church that has welcomed me; and I also have learned that I am not alone in this struggle; many other people live with neuromuscular disabilities, too, not just muscular dystrophy, per se, but things like myesthenia gravis, amyotrophic lateral sclerosis, spinal muscular atrophy, Friedrich's ataxia, and progressive muscular atrophy, among others. Some are devastating, but some are not. I have learned that while I DO have muscular dystrophy, I don't have the serious kind, and I can expect to live as long as 20 years or more with therapy and treatment. While there ISN'T a cure yet for muscular dystrophy or neuromuscular disorders, there IS hope, and there appears to be a breakthrough on what causes it; and once they find out WHAT causes MD, a cure can then be worked out and then implemented; and many people will then be cured. But until then, we have to wait; and all we can do for the time being is hope and pray that a cure IS found.
I have learned so much about muscular dystrophy and other neuromuscular disorders from my support group, and also from the Internet; and I also have been doing a lot of extra reading on the subject. Yes, having a disease like muscular dystrophy IS lifechanging and devastating, but I am NOT going to let it get to me, even on the days where it is rearing its ugly head; and I am going to learn to try to get around as best as I possibly can and live my life to the very fullest. I am a young lady, and I have so much to offer. I am presently going to college here in Arizona, where I am going to major in Journalism. My goal is to become a writer of children's books. I also would like to help disabled children and teach them that even having a disability, they CAN offer so much of themselves and do so much in life. I want to teach them that it is okay to be disabled, and being disabled is NOT their fault, and they can do anygthing they set their young minds to if they are given the opportunity.
Sure, I have my bad days where I am so weak I can barely lift my head off the pillow, let alone, get out of bed; but I have friends who help me when I need it, and most days are pretty good for me. I also have my church family, and their constant prayers and show of support for me and my situation is what sustains me; and also the Love and Grace of my Lord and Saviour, Jesus Christ, is what gets me through even the most trying of days. Even though I struggle, I still thank God for everything He has done for me thus far, and I have come to appreciate my life and all of His blessings He has bestowed on me. I also have realized that even though I may face an uncertain future, as long as I have God in my life and learn to rely on Him, He CAN--and WILL--get me through whatever life may throw my way; and I also have learned that as bad as I may seem to have it at times, there are many people who have it far worse, and compared to the problems of some people are going through, all of a sudden, MY problems seem insignificant, and all of a sudden, I see my situation in a new light. All of a sudden, things don't look so bad for me.
So what I am trying to say is this: even though I may struggle every day with my problems, I still see the beauty of life and what it has to offer, and I also have learned to make the best out of my situation, no matter how hopeless it may seem at times; and I have also learned to lean on the Everlasting Arms of my God in Heaven, and also know that He is ALWAYS there for me and He will ALWAYS be! I may have my problems, but I have the Love and Security of knowing God as my Lord, and it is HE who will help me through whatever my muscular dystrophy--or life in general--may throw at me!
Author's Note: Be praying for Michelle Kidwell; she is having a muscle biopsy done to see what kind of muscular dystrophy she has. Pray that she gets through the test and the diagnosis; and the uncertain days that certainly lie ahead for her. Pray for strength, hope, healing, and encouragement in her life; she is going to need ALL of our prayers! Michelle Kidwell is a gifted young Christian writer from Jamestown, California, here at the Den, and she is also one of my most dearest friends! Any prayers that you can offer her is certainly most appreciated!~ Thanks!
