“The world is on fire, are you laughing?” – This line is from a larger text from the Dhammapada shared this past Sunday at the Zen Buddhist Temple that Jenn and I attend. The larger idea of the entire text was that we are human, we will all suffer illness, bodily decay and death and all we ever have is this exact moment we are living in. How will you live that moment? In fear or with anxiety for that which we cannot control? This line “The world is on fire, are you laughing?” stuck with me all day. It was a darker and heavier reading, we were warned as such before it was shared but it did not strike me as they had predicted. Maybe because of what I have been going through recently. Maybe it is because I have spent much of my life thinking about death of myself and others. What I took away from that reading was a reminder to wear a smile, even one so small, as I walk through the chaos of life. The world will always be on fire, there will always be chaos, all I have is this exact moment – will I choose to wear a smile no matter how small as I walk through the chaos of life? Yes, that is my goal everyday. To find the good, something to be thankful for to sit next to the fear or anxiety that maybe harboring within me. As I ride through this road trip of life, I will have my smile drive the car, gratitude will control the radio and my anxiety and fears can be in the car as they do serve a purpose, but they are in the backseat of the car. No backseat drivers allowed.
When thinking about “The world is on fire, are you laughing?” One of my all time favorite films comes to mind, the 1998 Roberto Benigni film Life Is Beautiful. The movie is about an open-minded Jewish librarian and his son when they become victims of the Holocaust, he uses a perfect mixture of will, humor, and imagination to protect his son from the dangers around their camp. I have seen it at least three times in the theaters and many times on the small screen. I cry every time. This also began a star crush on Roberto Bengini which led to watching all of his films one winter. Burned in my memory is his 1999 acceptance of the Oscar for best Foreign Language Film, he is an amazing man. The passion for life that he portrayed in the film bursted from him when he heard he received his award. The film Life Is Beautiful resonated with me in my early twenties as how I would like to walk through the world. It is not always easy to find my smile in the more difficult times of my life journey. Sometimes I went all out poopy pants pity party with no smile to be found. Usually I could dreg up things to be thankful for – but a smile, no matter how small, felt like a tall order. Thankfully those days of poopy pants have become fewer and fewer.
Jenn has frequently taken the role of Roberto in my life when I am lost in my footing. When the oncologist was debriefing my diagnosis he was plowing through how advanced my cancer was and as it hit me like a ton of bricks he kept on speaking moving onto the next topic. Jenn noticed my breath and abruptly interrupted the oncologist to point out the poop emoji sticker on his computer which made us all pause and laugh. She did this to create a pause in the barrage of information for me to breathe. There are so many times that she brings a levity to the weight of what is swirling around. I am so thankful for this amazing gift she has. I have seen her execute this professionally, personally, with strangers and loved ones alike. It is something I have been trying to learn from her for years now.
Tomorrow I start my second round of chemo. I have an infusion tomorrow at 9:30am. It is supposed to take about 4 hours but last time I was there for 8+ hours due to an acute reaction to the Oxaliplatin that kicked in about one hour and fourty minutes into the infusion. Nausea, vomiting, intense restless leg, it was not fun. They ended up giving me Ativan to knock me out to get through the rest of my treatment. We met with my oncologist on Friday and we are reducing the Oxaliplatin by 10%. Hopefully with that I will be able to get through the infusion.
The last two weeks my side effects have eased up. I have been able to open the refrigerator, cook, touch things and feel relatively normal. It has been glorious. I am acutely aware that after tomorrow I will reenter my minfulness practice of managing side effects. I love Jenn’s idea of reframing my side effects as a mindfulness practice. For me that is real – to focus on slowing down enough to remember to turn on the faucet to warm the water before using the toilet, to not open the fridge without gloves on, to wear gloves in general, to warm up my beverages and food, to make sure I have my slippers or socks on, put lotion on my hands and feet throughout the day, take all my suppliments and chemo pills, stay in bed if that is what my body demands – stop plowing through life.
As the weather gets chillier I look forward to bundling up in sweaters, scarves, hats, my wonderful cold weather puddly boots and drinking warm tea by the fire. I have never been a sit around reading and writing kind of person but I am going to explore that this winter. Although I have had to put my organizing business and massage practice in hibernation I am still doing DONA Birth Doula Trainings and working with the Michigan Prison Doula Initiative (MPDI). I am on the board of directors of MPDI and we have been working on our proposal for two years. We submitted the proposal this summer and received a yes for our program implimentation officially in late August. Now that we have received the green light from the Michigan Department of Corrections (MDOC) I will be morphing into position of the Prison Doula Program Director. This is my dream job that I have been waiting for for over a decade. It is a bit of odd and fortunate timing that this is coming to be as other forces in my life are asking me to slow down. Slowing down for me is not having multiple jobs and not buzzing all around doing all the things. I get to slow down and focus on myself and MPDI – what a blessing. If not for this forced slow down I would still be trying to do all the things and not giving the proper attention to any of the things. I get the opportunity read and learn more about childbirth in prison and to building this program from the ground up with some amazing people. I am so thankful that I am still able to work from home and to be able to do such meaningful work.
Overall I am so thankful. I realize how lucky I am for catching my cancer before it spread further, that my diagnosis had an optomistic projected outcome, that I live in the 21st century where medical technology can do something for me, that I have an wonderful network of friends and family, that I have insurance, that my wife and I are an amazing team, that my kids are more awesome than I could have ever dreamed, that I can still work, that I am financially fortunate, that most likely none of this will be permanent, and so much more. I am so blessed by the universe.
I cannot lie, I am thin and teary much of the day today. I don’t know what tomorrow and the following days will bring and I am not a big fan of that. One thing I do know though is that my wife will hold my hand and make me laugh. My kids will help me with tasks while lovingly poke fun at me – that’s how we roll. Friends and family will be sending love and support from all around.
I will be okay.
I know I will be okay.
And my eyes may be leaky but in this exact moment I am smiling.
For more information about the Michigan Prison Doula Initiative please check out our website www.prisondoulas.org
Also one of our founding members, Jacqueline Williams, will be giving a TED Talk on September 27th at 7pm at the Ypsilanti District Library.
For more information on this event: https://www.ted.com/tedx/events/29710