THE FASTEST WAY TO GET AN ANSWER IS TO ASK A QUESTION
As a member of ninjawriters.org, I recently accepted a writing challenge to Build Your Own Blog. During July, participants organized their thoughts and accumulated 31 blog topics to cover during August. We will write and publish a daily blog. In September, these blog entries will be prepared for publication and by October we will all be ready to publish.
My writing subject is a second common sense guide to living with multiple sclerosis. I Have MS.What’s Your Super Power?, published early in my MS journey. As a newly diagnosed MS warrior, writing was an effective coping mechanism for me. The book was raw. It was short. It received attention: some positive, some not so much. This second book results from 20+ years as an MS veteran.
Regardless, this experience opened some doors and taught me several important lessons; the first of which being Don’t be afraid to ask questions.
So, I collected a few links on social media and unabashedly jumped right into life as an investigative reporter.
And that’s all it took. From fatigue with multiple sclerosis to sharing household handicap hacks, my list of 31 possibilities grew (and is still growing) exponentially. (I’ve never used that word before and am patting myself on the back right now.) The number one issue requested is the invisible symptoms of the MonSter.
Wow, that’s enough writing material for several months, so if you read my blog, don’t be surprised if it’s a recurring theme.
WE ARE ALL DIFFERENT
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, I was hit (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.
And 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 feeding 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 I was 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 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.
A PLAN
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 love her. I told her our mission on earth isn’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.
EARTHLY ANGELS
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.
Love and Light,
Lisa, Lady With the Cane
