Saturday I had the opportunity to speak to a wonderful support group in Charlotte, NC.
The experience was life-changing.
I have never met a more energetic and welcoming group of people. Group leader, Sandy Hirsch, overcame some serious health challenges (all I know is an ambulance was involved!) earlier in the week to help organize and attend the meeting. The setting was idyllic. The room was large, with cathedral style ceilings and great big windows which allowed the morning sun to flood the room–adding an even more positive feel the the 10 am breakfast event.
The sense of community among these patients and caregivers was palpable. A number of couples brought their adult children along to the meeting as well, making it a truly family affair.
All were having so much fun visiting, Sandy had trouble getting the meeting started. I didn’t take a count, but there were at least 40 people there.
One of the striking things about the group was the diversity among those who attended. Some were old and some were young. There was a cheerful woman there who was obviously of Asian American descent who asked some very important questions.
I met several African American gentleman before I spoke. Afterwords, I met an African American woman–and her white friend and caregiver. Having grown up in a tense, segregated suburb next to Chicago, I love that!
Unfortunately, multiple myeloma doesn’t discriminate. All races are visited by the myeloma reaper. White or black. Asian or Hispanic–myeloma doesn’t seem to care…
I was so impressed with Charlotte. The neighborhood were clean. And you could tell the residents take great pride in their city.
I told Pattie after I returned home that I could be very happy living there. I felt the same way about nearby Colombia, SC when I visited there last month.
Both groups had a deep sense of community and caring.
I was the first person on the agenda. I shared my story and answered questions for well over an hour. The time flew by… It seemed like 15 or 20 short minutes.
There was an instant connection between myself and the group members. Many were regular readers of this site and my columns in the Myeloma Beacon.
A number of you have called and emailed with concerns recently. A few of you have noticed that I seem a bit down as you read along day to day. Several more are concerned about my travel schedule and the toll it takes on my–dare I say–myeloma and myeloma therapy ravaged body.
I think I mentioned a few days ago how difficult making this trip was for me.
What should have been a relatively easy two day trip (no layover), turned difficult as stomach and digestive issues made it nearly impossible to sleep Friday night.
RVD therapy has been worn me down. I could go on and on…
But none of that mattered as I walked in to the meeting room and was greeted by so many friendly faces.
Everyone has a story. I’m just lucky(?) enough to get to officially share mine. Using names when I write following these events are tricky. So are taking pictures–although I would have asked anyone who didn’t mind to gather together for a picture if it wouldn’t have interrupted the ongoing meeting after I finished my talk.
Fortunately, what my travel planners thought was a 9 am meeting was actually 10 am, giving me time to rally in time for my visit.
I stuck around after I spoke for a few minutes, but I needed to head-off to the airport to catch my 1 PM flight.
But even with time constraints, I was able to listen to dozens of patient and caregiver stories before and after I spoke.
Just before I left, Sandy called me up to the front of the room and announced that the group was making a donation–in my name–to the IMF.
How cool is that!
Why was this a life-changing moment for me? Because after hearing dozens of patient and caregiver stories before I spoke, I realized a number of these kind folk were a lot worse-off than I am.
Yet there they sat, some with canes and walkers close at hand, listening, asking questions and smiling. EVERYONE WAS SMILING!
Why do I make the effort to take these trips? For the smiles! For the hugs! For the sense of community!
God, it is great to be alive!
I don’t feel well again this morning. My velcade sug-q infusion was last night. So was my 40 mg dex–and I started my next cycle–taking my 25 mg of Revlimid last night, too.
But it’s all a bit easier to manage now. If I’m feeling bad, I just think about Charlotte–and all of those smiles!
Feel good and keep smiling, too!