Riding The Wave – Multiple Myeloma

Clematis at my house in Maryland

Sharing experience of hope and strength

Some months back I was contacted by a consulting group who organizes speaking engagements for particular disease modalities that they have been hired to work on.

Originally they were looking for Dave to participate. But after much conversation they agreed to allow me to participate in the Ambassador training program as a caregiver.

I was flown to Boston and met up with other MM patients and some caregivers to undergo training and understanding of FDA guidelines and rules. I had a fun filled packed 3 days in beautiful Boston. They allowed me to fly home a couple days later and I was able to connect up with some dear friends there.

I was intrigued with the possibilities. I had realized through this experience that I had a story to tell. One of strength and hope. One of perseverance and a point of view that I wanted to find a way to share.

When you have gone through something like this you feel a desire or a need to somehow give back. Give back to those embarking on this journey called Myeloma or Cancer. A way to offer hope and inspiration. But I knew that I didn’t want to become the Myeloma Guru. I was torn between moving on with our lives and giving back. Part of starting this blog was an effort to strike that balance somehow. My need to heal myself while offering help to others, but not get so sucked up in it that we were held, frozen in time, like a Star Trek force field that needed repair to unstick the button and let me re-materialize back into my life!

When this call came and subsequent dialog, I was excited with the idea that I would have a venue to share our experience in a hopeful way and offer inspiration to those who are struggling so profoundly with their new situation. To be able to do it in a way that would strike that balance.

The three days spent together with strangers was much like what I imagine a marriage encounter weekend would be like. Pouring out your heart and soul to folks you’ve only just met, who share something in common with you. To be enriched by them and hope that you enriched them as well. It was all that and more. I was emotionally wiped out, but in a really grand way. I realized how much I missed my “Myeloma Buddies”. That camaraderie we experienced every time we ventured to Little Rock was indeed profound. I was a bit surprised by that, but I knew immediately how at home I felt, amongst my fellow Myeloma travelers. We were all so different and yet all so similar. Learning their stories, their triumphs, their difficulties was awe inspiring.

A story would be drafted and worked on by me and a creative story writer with the company. Passed through a drafting process and on to a legal tower somewhere in the clouds to pass FDA muster. Then I would be called upon to travel to different venues who had requested “speakers” to share information about Myeloma.

I have had a few almosts, and then one that had been requested, cancelled and revived has now come to fruition. I’m trying to quash my nervousness. I will be speaking to two groups in Little Rock. Imagine, I’m going back to share my experiences there. All my travel arrangements are taken care.

Wish me luck and that I rise to the expectation and goals of the program.

Tags: speaking engagement