The night before my official diagnosis with an acoustic neuroma I had an idea of what I had based on my sister (a doctor) and I’s amateur analysis of the MRI over the phone. She graciously told me what I had and told me not to worry and wait for the doctor to advise. I did my best that night but spent a majority of that night and the days following my conversation with my ENT scouring the internet for other people’s good or bad experiences with my type of tumor. I found many people who were gracious enough to share their journeys on the internet with a total stranger. Many of those folks took time to email me back, to help advise me in my journey, to send me words of encouragement from the other side. I learned two huge lessons in those first weeks of my diagnosis. Everyone’s experience with illness and disability is different and secondly, sharing can be a gift to the world in the way it enables us as human beings to connect, to release that which may be plaguing us, and help one another through the experience of shared trauma.
I decided that if there was any possibility that my experiences may enable someone out in the world to feel less alone the way others who shared with me helped me, I had to do it. So I started this blog, to share with my friends and family, but also to share with anyone going through any kind of struggle in their life. I am a firm believer that our testimony helps us connect, I believe that we can learn from each other. As my dear friend Ben once explained, there is no extra credit in the struggle. We can learn from the hardships of our fellow humans, rather than suffer silently and alone. To me, it is irrelevant what plagues you, there is no hierarchy of disease. I don’t write to elicit sympathy or wallow in the drama of my tumor. Rather, I write as a testament to the idea that we all have burdens to bear and we all have joy in our life to share in. We shouldn’t walk through this life alone, nor should we limit our worlds to the comforts of those around us. I write in order to invite anyone struggling with anything, or anyone sharing joy, to walk alongside me in my journey. Perhaps in this way, if we walk in tandem, we can foster understanding, we can help carry one another when the loads of each of our lives feels a bit too heavy to bear. And more centrally, we can share our light and our joy, our triumphs with one another.
Many of you know that I write for Cure Magazine, a magazine rightly devoted to the struggles of folks with cancer. While I do not have cancer and have never claimed to, I have been an active member of many communities devoted to helping those with brain tumors of all kinds come together to share experiences and support one another. I also believe that while every person’s experience with whatever ails them is different, there may be wisdom hidden in my struggles that my help others as they pursue their own health. I am a big advocate for those suffering trauma and firmly believe that there is not a great degree of usefulness in separating our communities based on benign or malignant, or along any other boundary nor do I see a great service in valorizing some diseases over others. Some people with cancer sail through treatment and end up in remission, others do not. Many suffer, many do not survive. I personally have watched friends and family succumb to the hideousness of cancer. I have grieved them and continue to do so. I’ve also watched many I love succumb to other types of suffering – mental, emotional, physical. Some with acoustic neuromas or other benign tumors respond quickly and effectively to treatment, others do not. The importance is not in the severity of diagnosis nor is it in the magnitude of suffering. Suffering is suffering and does not care about the earthly constraints we place on it. Our bodies do not care about the rationalizations of our diseases, and indeed our diseases care not what we call them. If they are built to take, they will take. If our bodies are able to heal, they will heal.
I am approaching my 9th craniotomy, to try to enable a quality of life I have forgone for too long. I am undergoing surgery again with the hope of healing. I spend my time in preparation attempting to share as much love with as many as I can. I spend my time sending light to those who may need it and hoping like hell it reflects back on me as I put my life in the hands of a mortal man. I prepare by sharing because I know not what else to do.
I write because I hope that in my suffering you may find hope, just as I found a light at the end of the tunnel of treatment. I found hope in the stories of people that had no reason to share with me aside from our shared humanity. I found hope in kindness, in testimony, in the possibility of survival. While I know that in opening my heart, my life, my disease and myself up to the internet I open myself up to a world of possibilities, opinions, and ideas – both good and bad – that are well beyond my control, I hope that good wins out, that my journey to pay it forward matters more than it doesn’t, and that ultimately we can walk alongside one another in hope, in love, in light, and in life.
Peace and love dear friends,