Life since MS has been a journey of diametrically opposed experiences. I have been challenged by extreme losses that span physical, psychological, emotional, social, relational and occupational spheres. In contrast to the many dark, unsettling losses I have been humbled by some unearthly expressions of kindness, generosity, and humanity. These amazing dialectics have given me much to process, to distill and to ponder.
MS has been described as a thief in the night. He prowls through your most coveted possessions. Rifling through the things you hold most dear and leaves with what he thinks are the most marketable items for resale. The sun does come to rise again, but things are never the same. You've lost things you once valued, but more than that you've lost a sense of safety, familiarity and those things are so much harder to replace. Many parallels can be drawn between a midnight home invasion and living with a chronic disease like Multiple Sclerosis. You just never know when it will strike and what its impact will be.
MS has ravaged my brain. At times, my physical state has spanned between looking well enough to pass as "normal" in a bystanders eyes to being bound to a bed with little control of my body or its movement and function. The time span between the two has been shockingly brief, giving no opportunity to distill the changes into my self concept. I recall in my early days, being no different in my mind as I was the month previous mentally preparing to attend a conference for work when in fact I was unable to sit, or transfer safely to a wheelchair. There was absolutely no way I would have been able to attend that conference but I felt no different until I tried to move and there was no response in my body.
During this time my emotions ran high, my self image so out of sync with my failing body I can only imagine what it was like for people on the outside looking my way. I remember feeling overcome with happiness when I saw the faces of people I thought I might never see again (if I didn't make it). This prompted many raised eye brows and whispers. People wondered if my responses indicated that I didn't understand the potential that the unknown disease process carried with it the risk of death. But the opposite was actually true, the fact that I had the opportunity to see, to hug and to create new memories left me with a powerful sense of gratitude.
At the time I told my doctor not to worry, that I wasn't going to die. I had too much living left to do. He left my room that day with a heavy expression. In fact, I did not have an imminently terminal illness and I have been gifted five years since that day to carry out that living.
In the days following my hospital admission and diagnosis in 2006 there wasn't a need that presented that wasn't met ten fold. Worries about how I would afford to pay the bills were quickly followed up with worries about how I would acceptably thank the many people who offered gifts large and small. Many of these gifts came from people I didn't know, who didn't know anyone in my family but heard about our story and then there were the kind earth shattering offerings from those people who know and love me.
I sometimes find myself feeling lost without the structure, peer connection and balance that work provided in my life. But, during these last five years I have lived with a feeling of gratitude and indebtedness that has carried me through the rough times. It has given me cause to reach out and give back in as many ways as possible. It has strengthened my faith, restored my hope and provided me with the courage to face fear and adversity.
With this mighty arsenal that thief in the night can't possibly bankrupt me, can it?