I recently joined the Acoustic Neuroma Association as a member in order to gain access to their community because I had heard it had helped many people. Unfortunately I had some trouble accessing their site so in some of my more needy moments, I began looking elsewhere for a virtual brain tumor community to share with and learn from. I didn’t want to go to Facebook, it somehow seemed like reaching out to my Facebook friends was both too intimate and too strange, maybe a TMI situation. SO I went to Twitter where the relative anonymity of me to my followers and the potential reach of a message seemed much more promising. I hesitantly began to share this blog as well as use the hashtag #acousticneuroma. I started searching for other hashtags and came across #BrainTumorThursday. That was on Wednesday, so I thought, I better start following some of these folks before tomorrow! SO I did and I woke up to the Twitter equivalent of a warm welcome from @TumorWarrior.
It was a good way to wake up, though I am still not convinced there is much universal advocacy work that needs to or can be done in regards to brain tumors I do think it is valuable to have a community around the issue. Initially when diagnosed, I treated my tumor like a closely guarded secret. I told people not to tell then wondered why people didn’t want to know. I held it close to me and hid the potential it caused for disability. Shadowing myself from the outside glare of the judging public. That was very isolating. Very lonely. What I realized was that much of my hope had come from those that were willing to share in my journey by telling their stories online. I spent hours poring over the internet, meeting and connecting with people through YouTube and random blogs. I started to feel less terrified. There were also strange moments, glancing through the tweets on #BrainTumorThursday that talked about how unfair it is that there was no cure for cancer. This evoked many emotions for me. First was a sudden pang of guilt, like my benign tumor was not worthy of being in conversation with these more serious tumors. That there should somehow be a ranking of disease is inherently problematic. It is like when people empathize with me by sharing their own stories and start their sentences with things like, “not that it compares” or “it is nowhere near as bad as what you are going through.” Why not? Every experience is valid in its own right. Why do we think that some experiences are more valid to process than others? That I felt guilty for not having cancer was very strange. I snapped myself out of that shit real quick.
Of course our experiences range in severity and seriousness and that is fundamentally true. But our experiences and their authenticity are personal, individual and contingent on our cultural experience. We shouldn’t devalue our lives and our experience because it could be worse. And in the same breath, I will say we should also take that perspective that it could be worse and learn from it, and work to make it so it is not worse for anyone, anywhere, ever in the world. And I will agree, cancer is UNFAIR. Do I think it is unnacceptable that there is no cure? I think that is a loaded statement. Who bears the burden of finding that cure? IS industry preventing the cure? Is there more that can be done? As an academically trained brain I can’t just say that anything is unacceptable. EVERYTHING IS UNACCEPTABLE. And with that being known we should all champion our causes. We should all find things we care enough about to think they are unacceptable and use our platforms to communicate and build community, mindfully, carefully, and thoughtfully.
I’m glad to have found #BrainTumorThursday and hope that the community will be as happy to have found me. The power of social media you guys, it’s happening. This is happening. I don’t know you, but we share something in common, or at least kind of in common, our brains and our bodies are at risk, now let’s be friends.
Peace and love – Samira