Reading the recent postings, I was struck anew by the sheer power of a force that has never stopped astonishing me since the day of my diagnosis, over 6 years ago. I’m referring to the power of community, and nowhere is everything that term implies more amply demonstrated than here.
I’ve frequently mentioned how, as a nurse, I’ve seen a lot of support groups and support systems, but nothing matches the mesothelioma community for determination, openness, and unconditional compassion. We are a diverse group in terms of age, politics, background, and beliefs, and yet these differences are instantly swept aside in order to focus on our shared experience. We nimbly bridge any gaps for the purpose of communicating the essentials and bolstering our common humanity. In this age of fragmented societies, the rest of the world would do well to model what we have put into practice so instinctively.
I’m not just singing the praises of this community for lack of anything better to do – I think it’s important to review this phenomenon on an ongoing basis to point out just how vital a role it plays in the lives of others. You have only to look at how the tone of what is written by a newcomer changes over the course of a few posts to see the impact clearly. What starts as tentative and fearful morphs into hope and relief, and even joy. Where else on earth would any of us find the opportunity – indeed, the privilege – to have such an effect on the lives of others?
This is the nature of awareness. We seek to spread awareness not only to call attention to our own plight, but to shine a light in the darkness so that others who are in need can find the same optimistic path. For every newcomer who finds their way to this resource and says “thank goodness I found this group”, there must be many others who for one reason or another, never realize we are here. I for one cannot imagine dealing with a diagnosis of mesothelioma without the benefit of the “common unity” the Foundation provides. This is what makes awareness activities so critical.
We all need to invest in an effort to “spread the word”. Yes, we may make other people aware that meso exists and requires funding. But realistically, we all know how many causes there are out there clamoring for the attention of busy individuals who are leading ‘normal’ lives – if they are lucky, these people may never attach much importance to what we say about meso. There will be, however, many people who are NOT so lucky, and who will hear (or have heard) the word “mesothelioma” from the lips of their doctor and not know what to do or where to turn next. They are our primary target audience.
Each of us can acknowledge what the support of the community has meant to us by ‘paying it forward’. We can reach out to others lost in the same dark despair that once colored our own lives, and do so with a minimum expense of time and energy on our parts. And there’s a plus: in doing so, we strengthen ourselves and our community in the process…
The Foundation has brochures for patients that can be left at physician offices, cancer clinics, etc. Think about your area and where such materials might be most likely to reach their intended audience. In addition to the brochures, the Breath of Hope newsletter (consider passing your copy on when you’re done reading it) can be left in waiting rooms, pharmacies, wellness centers where potential patients might see them, or in locations frequented by at-risk populations (like union halls or veterans’ centers).
If you’re able, add the personal touch to your outreach activities. Let the places you visit to leave materials know that you are available to speak to any patient who wants more information. Even if you can’t get out and visit places, you can call doctors’ offices, clinics, etc., and/or send them letters letting them know you are available to help any mesothelioma patient/family who asks for such assistance.
One caution – and I hate to bring it up in this heartfelt discussion about human contact, but we do live in thereal world after all….. Be prudent about passing out personal information. Consider setting up a separate email address that can be used solely for outreach efforts and responses, and don’t readily supply your address until you are certain about doing so.
Lately, I’m realizing that I really am NOT alone – there are a lot of us here in the Northeast, particularly in the PA, NJ and NY region! We’ve gotten together on an occasion in the past, but we’re currently contemplating taking it one step further and pooling our ideas, energies and resources to organize an annual September fund-raising and awareness activity. We’re already exchanging emails on the subject, and hope to all meet somewhere mutually accessible for lunch and brainstorming.
Perhaps, like me, you have other members of the meso community near where you live. Wouldn’t it be great to meet somewhere to talk face to face, and share resources and tips pertinent to your area? Even if there are just a few of you, think about meeting in a coffee house or library. Consider going together to local civic centers or groups to offer resources and information to other interested people, bringing with you brochures, newsletters, or even a laptop for referencing the Foundation website.
Community occurs on so many levels…. It happens every time you post in the online forums to share tips, consolation, or joy in a good diagnostic result. It happens every time you share your phone number or email to a ‘newbie’. It happens every time to talk to the other patients in the waiting room at your doctor’s office or chemo clinic. It extends out from the web and the Foundation into the wider human community, into yourcommunity. In the face of a powerful enemy – meso – it is an even more powerful medicine, and YOU are its distributor!
We live in a very, very big universe, relatively small beings on a relatively small planet, circling a relatively small sun. Compared to the timescale of worlds, our lives are brief, and they often seemed plagued by cruelly capricious fate. What gives those lives their dimension, depth, and meaning is ours to fashion out of whatever we have at hand. I’m going to paraphrase Bec again: true star children fashion light out of darkness, to both illuminate their own path and shine a light for others who follow. The coming months of approaching winter, with the short days and lengthening dark, seems like an especially good time to find ways to shine!
– June Breit
