On Valued Community & Charting New Territory
Myeloma On The High Plains II is growing. The top priority of this site has always been to provide benefit to others who may find themselves in a situation such as myself and other myeloma patients who are living with a chronic disease.
We are not alone. There is suffering all over. Multiple Myeloma cancer patients do not have a corner on difficulties or tough times or huge challenges or however you want to identify some of the nuances that enter a life that includes living with a chronic condition.
Which brings me to our new author - Anne Mason. I have known Anne most of her life. She does not have cancer. She is living with MS, Multiple Sclerosis, another chronic and certainly not desired condition. She is great. Much younger, a female and not like me. She owns her own theatre company and I had to use spell check to make sure I spelled theatre correctly.
What is crazy is that I was diagnosed on a Friday, got the official diagnosis the very next Monday and then on Tuesday (the next day) I went in for a complete bone/body scan and who did I see waiting in the same room for x-rays – that is right - Anne Mason. She may have been one of the first persons outside of my wife and two children who found out that I had cancer. There just are no coincidences.
Along with myself, Anne will be sharing her perspective on her journey moving forward. Personally, there is so much to be gained here in terms of benefits to/for others. This is really a good deal. Please welcome Anne Mason to the site!
Also note that my regular article will be posted more towards the end of the month. Thus two new posts/month will be the new format for Myeloma On The High Plains. Thank you.
The body is a fragile thing. As is the mind. How lucky to have community to shoulder some of the burden. To support. To commiserate. To share.
It’s with that great fortune that I enter your space today.
Hello. My name is Anne. I am a native of Laramie, Wyoming, a theatre professional, a crossword enthusiast, and a community advocate. Above all, I am a lover of people - in all of our beautiful disorder. And it is my hope that, through vulnerably sharing my own worldview, that I am granted the honor of enriching yours.
You see, 8 ½ years ago, I was diagnosed with Multiple Sclerosis. After suffering a mild concussion, I woke up the next day to find a persistent tingling in my toes. Over the next three days, those ever-present pins and needles crept their way up my limbs and throughout my torso. By the time I returned to the emergency room in search of answers, my body was pricking from my armpits to my toes. I was placed inside my first MRI machine and hooked up to an IV drip of solu-medrol steroids. Finally, the doctor came to shed some light on the mystery. In an instant, my world changed (or, to quote the exceptional playwright Will Eno, it was the moment my world “stayed the same forever.”).
Funny how one word can incite years of trauma. Quite honestly, the word still draws tears to my eyes and a strain to my breath.
The MRI scan showed multiple active lesions on my spine and in my brain. All signs pointed towards MS. My head swirled as I was overwhelmed with information about the autoimmune disease - the murky hypotheses about its cause, the uncertainty of how the disease would evolve, the lack of a medically-established cure. I was 24 at the time, developing ambitious plans for a future career in the theatre - a young woman with the world at her tingling fingertips.
And that one word toppled it all. Lesions. Just like that, my meticulously planned future turned into a towering question mark.
I navigated the next few months with psychological resistance, but relatively good health. I began to think that maybe this new diagnosis wouldn’t actually derail my life. I ran a 5k for Walk MS, determined to prove that I was more than the disease. My body handled it just fine, so I accepted a role in a touring musical. I told myself that my February relapse was just a one-time blip on the radar. In doing so, I mastered the art of denial. The thing about denial? Sooner or later, life has its way of waking you up to reality.
On stage at the Lander High School, while fervently dancing and singing an Andrews Sisters swing medley, I realized that I could not feel my feet. My muscle memory kept me in time with the choreography, but my present sensation was gone. Following intermission, the sensation disappeared from my hands. I somehow navigated the cognitive dissonance, the break in my psyche between the fictional and functional worlds, and made it to curtain call without anyone the wiser. And then I locked myself in a bathroom stall and bawled. No more running away from the diagnosis. MS was here to stay.
I wish I could tell you that this relapse was as tidy and manageable as the first one. Or that it was the last flare-up for the foreseeable future. Unfortunately, my journey took a different trajectory. Over the next six months, my condition deteriorated at an exponential rate. In turn, the reactionary treatments elevated in extremity and risk. Symptoms graduated from purely sensational disruptions, to chronic pain and gait problems, and then to total debilitation of motor skills, bladder control, coordination, and even cognitive processes. By the end of the calendar year, I was spending more time in a hospital bed than in my own home.
I will save the heavy details of this chapter in my life for future columns - instead, let me return to the origin of this post. As the relapses compounded, I found myself regularly attending the hospital infusion center for steroid treatments. In doing such, I built a new community with other patients who, like me, were navigating the uncertainty of medical tribulations whilst simultaneously capturing and cultivating the most joy and love that one can reap from this one precious life. Through it all, we share heart, courage, pain, and hope. We share humanity.
And now, I am humbled to share my perspective with you.
I am somewhat new to sharing my story with others. I carried it as a badge of shame for quite some time, masking the gravity of my inhibitions under a veil of forced confidence. With the assistance of loving relatives and friends, the guidance of an excellent therapist, and the unconditional support of a community of strangers-turned-family, I’ve gained the courage to speak out publicly, even to those I’ve yet to meet. We may be strangers at the current moment, but I look forward to evolving into compassionate confidantes. Thank you for providing a gracious space for vulnerability. Thank you for taking the time to read my musings. Thank you for bringing light into this world.
Until next time,