This week’s Beacon forum poll ^[1] asks, “How does your quality of life compare to your quality of life prior to your multiple myeloma symptoms and diagnosis?” There is still another day left for people to respond to the poll, but so far, “moderately worse” seems to be the leading answer.

I answered “significantly better.” How can this be? I often feel aching bones and less-than-boundless energy, and although I require more sleep, I have a harder time falling asleep. These symptoms are really quite minimal — The more I pay attention to my health and every other aspect of daily life, the better I feel.

Although I considered myself to be health-conscious in my life before multiple myeloma (BMM), it became clear in my life after multiple myeloma (AMM) that I had been fairly clueless. My health had likely been deteriorating for years leading up to diagnosis — I just did not notice.

Any moments of feeling unwell take me back to my AMM “couch days.” Earlier this week, I experienced symptoms of a summer cold — achiness, a bone-wracking cough, and congestion. Surrendering myself to the arms of my cozy sofa to consume fluids and rest was the start of a cure.

Retreating to the sofa brings up a mix of unsettling dread and an odd sense of familiar comfort that eventually became part of my myeloma recovery and healing.

The cold was a small setback in my vacation plans, but after the day of rest, I was on the road to visit an old friend. I now sit — in awe — staring out into lush green of the Catskill Mountain region.

During my drive here, MapQuest instructed me onto a bridge over the Hudson River. I faced a black pillar of smoke as I drove across and the traffic came to a dead stop. After waiting half an hour for the crisis to resolve, I reluctantly joined several others in circling around to exit this dilemma. Without a revised MapQuest route, GPS, or smart phone, I was left with an old-fashioned paper map.

Once my initial panic subsided, I somehow managed to work my way through winding country roads of this unknown landscape to my destination, a remarkably beautiful place. This is how I live my AMM life — without a clear plan — instincts take me forward into uncharted territory. Multiple Myeloma has sent me on a curious detour.

In a couple weeks, I am having the first solo art show of my career as an artist. I had put aside such notions long before I was diagnosed with multiple myeloma. Allowing creative work to have a priority in my life has led to interesting changes. I have been hard at work putting this together. The sense of completion and wellbeing I have experienced while engaging in this endeavor have been a shot of good medicine.

The medical community places great importance upon “health-related” quality of life. Separating health from everything else is like rating your vacation experience on only the comfort of the bed you sleep in. The smells, sounds, meals, activities, and company are equally important.

Whenever I am asked to separate out the bare physical effects, I know that only a partial story is being told. My true experience is holistic. My quality of life with multiple myeloma is impacted by my finances, mental state, social life, and environment. My physical health cannot really be viewed alone.

I was recently involved in a planning meeting with a group I belong to. I told them I was unable to commit to a labor-intensive event for next spring. Someone said, “Well, any one of us could be hit by a car between now and then.”

My unwillingness to agree is simply a matter of allowing for detours — keeping my time free to respond to the subtle calls to intentional living. Rest on the couch. Take a trip. Make a painting. Prepare a special meal. Write a story. The options are endless. Quality of life is a combination of feeling well or experiencing symptoms as manageable and having the ability to exercise a fair amount of free will.

A friend recently posted an announcement regarding the death of a loved one: “While condolences are customary, I ask that instead you take a moment to contemplate how precious and unique life is and honor it by living it as such.”

Quality of life is living with intention and appreciation — living with possibility.