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| Having a power chair gives me some independence |
My Uncle George told me once that being driven is a familial trait -- one that can be detrimental -- and that I have inherited that trait. He called it "the Martin drive". I know he is right...I see that drive in myself -- I am driven to perfectionism, to accomplishment, even driven to be strong, pushing through my weakest days (which isn’t always the wisest thing to do). For as long as I can remember, I have wanted to be creative, talented, strong, and accomplished, to be able to do the things that those whom I admire can do, but I can't. I'm definitely not perfect, I can no longer accomplish much in any given day, and I am certainly not strong. In fact, people often describe me as fragile, like a china doll, easily broken. Yet I am a woman who has always wanted to live exuberantly, to surround myself with family and friends, to dance until I absolutely can't. My disappointment about this situation in which I find myself is tangible. I am perplexed and have difficulty getting my footing on the ever-changing ground on which I stand; this place where strength and health are no longer within my grasp. You would think by now I would have learned to deal with all of this with grace, but some days I want to stomp my foot and say, "enough already"!
Systemic Lupus, Common Variable Immune Deficiency, Vestibular Dysfunction (damage to the Vestibular Nerve, which, in my case, is irreversible) and, in particular, MYASTHENIA GRAVIS, have all changed my life forever. I never know from day to day whether or not I am going to be able to catch my breath if I talk much, as the muscles that help me breathe become too weak. If I get out in the heat or allow myself to become fatigued, all my muscles fail me. The circulation to both of my feet is severely diminished (a condition called Raynaud’s, which sometimes accompanies autoimmune diseases such as Lupus), and my feet become purple and swollen within minutes unless I elevate them. I am in constant, unrelenting pain. I am off balance and dizzy almost all of the time. Treatment for any of these conditions is difficult at best, as my situation is complicated by the fact that I have multiple diseases and have to forego some of the treatments because of the adverse effects they have on one or more of my disorders. Needless to say, most of my days of late have been spent on the couch...I simply cannot will my muscles to work the way my brain tells them to. It is so frustrating! There has been little personal communication with anyone, because I simply don't have the voice or the breath to speak.As I consider my place in the whole scheme of things, I sometimes wonder where I actually fit? Do I have purpose? And if so, as I adjust my emotional state to align with this place in which I find myself physically, I wonder...am I fulfilling that purpose? It is an adjustment, after all. I've always been a "people person", one who has lived (and danced) through life with a vibrancy and zest for all things, whether it be work or play. I've already admitted that I'm driven, so reigning that in has been a huge change for me. And what about this "new me"? Am I, by quietly withdrawing, blending nondescriptly into the background of the hearts and lives of my circle of friends and family, whose days are spent in a fast-paced world of busyness and cares? I heard once that each of us has a place in the body of Christ...that we are part of the body and have a special function. As I have pondered that over the years, I have decided, and have no doubt, that I am a knee. Now that doesn't seem like a very beautiful part of our bodies, does it? Unless of course, you've got great legs, which I don't. But in spite of it all (the illness, the weakness, the pain and the loneliness those things bring), I am pleased that God has given me the compassion and inner strength to fall on the knees of my heart...to pray on behalf of those who are sick, those who are hurting, those who are brokenhearted and struggling. That being said, I believe I can...and should...do more.
I spoke with my home nurse about this today as I was receiving my IVIG treatment, and we both agreed that I have to own my role, and choose to make a difference by promoting awareness, doing my part a little at a time, even on the bad days. I realize many people have never heard of some of the conditions I have. How can I promote awareness? Where do I even start? There is so much research that needs to be done and it takes awareness, understanding and funding in order to do it. Without funding, there will NEVER be a cure for these diseases and so many more! So I write, and I share, and I will write and share again. This is more than just my blog, this is "MY FIGHT SONG"! And today, as you read this, we are here together. Please feel free to share any of my entries. Because together we can fight...together we can WIN!
"Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, vision cleared, ambition inspired, and success achieved." ~Helen Keller~
