My book I Have MS. What’s Your Super Power? came about initially as a personal need; but when a good friend of mine died of complications related to her MS, it hit me (SMACK!) with the realization of just how different we all are. Jamie and I were diagnosed within months of one another. We commiserated and compared notes. We shared fears and triumphs. We agreed to kick the buttocks of multiple sclerosis.
But we discovered early on that the MonSter had unique plans for us.
Jamie quickly viewed her world from a wheelchair, while I struggled with an occasional drop foot. When I transitioned to a walking cane, Jamie needed help to feed herself. I refused to abandon physical exercise while Jamie gained weight and became depressed. The progression of our disease became obvious and more than frightening.
When notified that Jamie was in the hospital and not doing well, I rushed to her side. Although we talked on the phone often, I hadn’t physically seen Jamie in a few weeks. The emaciated, fragile girl lying on the hospital bed was nothing more than skin and bones. I was afraid to hug her, but couldn’t help myself. She was my little sister, now and in life before multiple sclerosis. We had a history. We had a bond.
I visited until her discomfort became obvious and I felt in the way. As I prepared to leave I overheard a nurse telling Jamie’s husband that a wheelchair would arrive soon to transport her to his handicap-equipped van.
Jamie was going home.
Where Hospice awaited.
Two days later I lost my friend.
That’s when the MonSter made our differences known. It was at that moment that I dedicated my life to fighting the demon and advocating for multiple sclerosis.
Without realizing the depth of this decision, I made a post-mortem pact with my dear friend I would do whatever it takes to fight the MonSter. I would try any and every conceivable treatment, push my body to limits and learn all I could about living with and combating multiple sclerosis.
On the day of Jamie’s memorial service, I sat on my back porch afterward and I told her about her church service. I told her I loved her. I told her our mission on earth wasn’t finished.
I took a deep breath and blew a kiss to the skies.
And I saw this.
If that isn’t an affirmation of an afterlife, I don’t know what is.
And so… my BYOB journey begins. My goal is to reach, comfort, inspire, and share what I have learned over the past two decades living with multiple sclerosis. It’s not all about me. It’s about Jamie. It’s about you. It’s about the MS community. It’s about all MS warriors, past and present.
It’s about the battle, and how we come out with fists clenched.
Feel free to comment, suggest, share, and/or vent along the way. I want to tell OUR story.
Lisa, Lady With the Cane