I was diagnosed with Systemic Lupus as a young mother, so I have lived with chronic illness and pain for a long time. Through the years, I have suffered greatly and have added many other diagnoses to my list of conditions, some of them both devastating and debilitating. Other than one short stretch of time when I was in complete remission, I do not think I have had a single day when I was free of pain.
During my better days, however, I enjoyed relatively good health, maintained a career that I loved, and participated in hobbies I enjoyed. My husband and I were Ballroom and Country/Western dancers, and even owned our own dance studio at one time. But by mid-2011, my health began to decline, and for two years, I was so weak I had trouble holding my head up, could scarcely turn over in bed, and had difficulty opening my eyes. Speaking, chewing and swallowing were difficult, and I was alarmingly thin at only 89 lbs. I saw three different doctors before I was finally directed to a Neurologist, who recognized what was wrong with me at our very first visit. Rather than dismissing me, this doctor listened. And because she listened, she ultimately saved my life. She ordered blood tests, nerve studies, pulmonary function tests, a CT scan and a deep muscle biopsy; once she had completed her testing, I finally had a diagnosis. I have Myasthenia Gravis, an autoimmune neuromuscular disease caused by a breakdown in the normal communication between nerves and muscles that results in severe weakness. Myasthenia Gravis (MG) affects the voluntary muscles, including those needed to lift the arms, walk, talk, chew, swallow, and breathe.
I began taking Mestinon, a medication that permits freer transmission of nerve impulses across the neuromuscular junction, and while I saw some improvement, it wasn’t quite enough. Because I have a primary immune deficiency, I cannot take prednisone or chemotherapy, both of which suppress the immune system, and I began IVIG (intravenous immunoglobulin) infusions in January of 2013. I now receive these life-saving treatments on a weekly basis.
To tell you the truth, it isn’t easy living with Myasthenia Gravis. And honestly, some days, even breathing seems to take more effort than there is energy to muster. I have grieved for the loss of what once was and for what seems will never be again. That being said, I have learned much through my journey with chronic illness, and I am a stronger and better person because of it. I have learned that whether or not I understand the illness, the pain or weakness I feel at any given moment,
I still can choose HOPE and have an optimistic outlook for my future, however long that may be. I have learned that how I respond to my illness can carry over in subtle (and even not so subtle) ways to affect everyone around me, even when I don’t realize it. And I’ve also learned that how others react to my situation can affect my attitude as well. I think it’s okay to be angry or frustrated or even depressed from time to time, as long as we don’t harm others or linger too long in any one place. It’s too easy for bitterness to take root, and living a life of bitterness is really no life at all. So I have learned that every now and then, I have to do an attitude check.
Every time my husband sits by my side without a dance partner, my heart breaks. Every time we’re in a position for him to get to dance with someone and I watch from my power chair on the sidelines, I cry. BUT…I still hold on to the notion that I WILL dance again, that I WILL be strong enough to walk on my own without falling down, that I WILL feel good once again.
My husband knows this about me, and is my champion. He is the one who is there for me no matter what, taking up the slack when I feel too weak to go on, while understanding that I still need to be able to live. So we plan cruises and we go for drives, and even head to the mall once in a while so he can walk and I can zip through in my power chair, looking at all the cute styles in the windows. Together, we’ve decided that we will do whatever it takes for me to live as normal a life as possible. There are many days when I am too weak to do anything but lie in my recliner and rest. But even there, I am committed to involving myself in support of others and spreading awareness, to reaching out to others that are hurting, to praying for those in my life whom I love and who are going through difficult times. I know what it is like to be afraid that nothing will ever get better. But I have learned that giving up is not an option for me.
As a woman of faith, I believe that God is turning this situation into good, not just for me, but for everyone with whom I come into contact…my family, my friends, even strangers. Most of all, I have learned that neither my identity nor my significance lies in my health status, my career, or whether or not I am capable of doing the things “normal” people do. And I believe this to be true for everyone. We are each significant and have purpose because we are individuals, created by God. We are His masterpieces, intricately and beautifully put together, and nothing slips by Him unnoticed.
Kathie Lea Bradfield
MG Warrior, wife, mother, and “Nah-na”