-
Wow! You’ve encapsulated the whole of the generalized MG experience. Like you my “work” was in large part how I identified myself. I saw that role hammered away both by my age and the disease. MG is such a ‘silent’ disease, it affects us in such profound ways and yet from the outside people say, “Well you don’t look sick….” Ugh, how depressing, deafening, defeating and disheartening this can be! My work was exciting as it was one that allowed me to be active, interactive, and instructive. But it was one that meant I was on my feet most of the day, having to ascend and descend stairs / ladders throughout the day as well as bending, reaching, lifting and keyboarding. All of the while dealing with blurred and double vision throughout the day, weakness that made stairs and ladders daunting. All the younger engineers and technicians working for and with me were all to ready it seemed to chalk it up to my age while failing to see the disease. Layer on top of that time away from work for apheresis treatments and infusions and the multiple “crashes” (once a year it seemed for the first six years), and I was all but relegated to the ‘dust bin’ career path.
So, like you it gave me a chance to reflect on my whole life, my self worth, and what value I had to give. In a stroke of luck, the enormity of my ongoing symptoms and the pile on secondary infections and interactions with my other autoimmune diseases allowed me to accept permanent disability. What doors it opened form me! It allowed me to reenter the lives of my adult children in ways that they found helpful; it allowed me to be more active in the life of my church family in ways that didn’t require my ‘physical’ skills. Finally, it allowed me to understand the meaning of grace. So many people, beginning with my family, have been my eyes when I could not see, my legs when I couldn’t walk, my driver, my caregiver, my teacher! I’ve grown in ways I never thought possible. I do really miss what I had to leave behind, but in the end, I discovered that my work did not need me, it only used me as long as I didn’t ask for too much in return. Conversely my new life is one where I not only still use all my gifts but the energy that comes back to me tenfold! In my clear-eyed hindsight, I could not have asked for more, (although I would be lying if I didn’t wish that MG could now go away!).