By Greg Brozeit | Posted - Apr 3rd, 2020

 

 

 

 

Myeloma Crowd Social Distancing Dispatches

To be honest, the amateur historian in me finds what we’re going through kind of interesting.  This is an opportunity to bear witness.  We are now living through, without question, one of those rare times in history that binds us through a common experience to which we can all relate.  Ironically, we’re experiencing this communally at the same time when we’re as relatively isolated as we have ever been in our lives.

That’s why I think it’s important—to us, to the future—that we document our current reality, especially as a myeloma community.  That was my intent in writing a recent post about how myeloma specialists are dealing with the COVID-19 crisis.  I hope to update it a few times in the coming weeks and months.

Your story is also important, for the future and to cope with the unprecedented common challenges we are facing.  Lessons about life, about myeloma, whatever.  Lastly, this should be less about what you think.  It’s about what you do.  Because in this day and age, what we do matters more than what we think.

“I remain in contact with a lot of my European colleagues and friends and so have been hearing their stories for 10-14 days,” as Faith Davies, director of the myeloma clinical program at the Perlmutter Cancer Center of New York University wrote me recently, “It wasn’t until this week that I understood what they saying—it’s very difficult to put it all into words and its nothing like I have experienced ever in the past.”

That’s another lesson.  Time accelerates.  We had a Myeloma Crowd Round Table in San Diego on March 7 and it already feels like it was years ago.  What you will know in two weeks will make today’s knowledge seem ancient, another reason why it’s important to take stock of where you are.  You have no way of knowing what will come.  When it does, it might be important to learn from your own and each other’s experiences.

So, if you feel like it, please share your stories with us.  What are you doing?  For fun?  To protect yourself?  How’s that telemedicine working out?  Or did you get in for a visit?  What about procedures?  Changes in treatment?  Brady and the Bucs?  How are you dealing with cabin fever?  What do you miss?  What resolutions are you making?  Enquiring minds want to know.

Please send any comments you want to share with me at greg@crowdcare.org.  I’ll compile them into stories and share with you.

 
Greg Brozeit
About the Author

Greg Brozeit - Greg Brozeit has been engaged in myeloma patient advocacy since 1998. He began working with the Myeloma Crowd in 2015. Prior to that, he consulted with Dr. Bart Barlogie at the University of Arkansas after working with the International Myeloma Foundation for 15 years. In the first half of his time with the IMF, he inaugurated the public policy advocacy program, patient support group outreach and conceived the regional community workshop program. In the latter half, he directed IMF Europe, organizing more than 100 physician and patient education programs. Prior to working in myeloma, Greg was a program and project director for the Center for Civic Education, the Alliance for Aging, and he also served as a legislative aide for U.S. Senator J. Bennett Johnston (D-LA). He began his career as an upper school teacher and boys soccer coach in New Orleans, LA. He earned his BA in political science from Loyola University in New Orleans and lives in northeast Ohio.

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