By Eileen Rosenbloom
You might think aging with myalgic encephalomyelitis (ME) is a seamless dance where an illness catches up with a stage of life. As people age with their own set of ailments, you’d hope this latter stage would offer a welcome mat of normalcy.
Our healthy peers would like us to think so. They say we’re all getting old and they’re tired too. Such words do not placate us, however, especially when they also spout platitudes such as, “60 is the new 40!” As a 60-something person with ME, it feels more like 60 is the new 80 except when my mother was 80, she was far more energetic and active than I am now.
One thing is clear: for better or worse, our generation is not our grandma’s senior. They’re fit, health conscious, and attack new wrinkles with the angst of a 13-year-old who awakens to a fresh zit. They swear, in this day and age, we will live to 100. That’s a lot of time to pursue bucket lists and, let’s be honest: bucket lists are for the healthy, not the sick. While healthy seniors might plan a cross-country tour, we’re just trying to navigate a trip to the bathroom.
When people reach their latter years and particularly as they retire from lifelong work, they entertain thoughts of relevance. To maintain a sense of meaning, they might volunteer or pursue hobbies they didn’t have time for while in the throes of career and family.
How then do we with ME find meaning when we’ve been stripped of so much of what previously defined us? Are we still relevant? Or relics left over from a time now obsolete?
Years ago before ME, I visited Italy. While strolling through the ruins of the Roman Forum, I marveled at the remains of destruction and abandonment. Many statues lacked limbs and heads. Although not in their former glory, these deformed beauties continued to enthrall. My companion commented that if this were the United States, they’d have razed the entire Forum and built condominiums in its place, basically committing architectural euthanasia. It could have been argued that the site no longer had any utilitarian purpose, but as we gazed at the sculptures, the beauty of history brought to life was undeniable. Despite the obvious deformities, we stood transfixed before the temples, arches, and beheaded statues, transported back in time. In fact, it was those missing limbs and broken columns that breathed with stories of a time past.
Like the ruins, those of us with ME have lived through our own battles. Our finish is worn; our broken edges rough. Yet, no matter how much illness diminishes what used to be, our beating hearts still pulsate among the rubble. Our ability to love is off limits to that which destroys, even if we must find new ways to express caring. We may be missing parts once useful, but our broken, fragmented selves stand like ruins of old. Our empty spaces cradle tales of survival and perseverance.
We are the ruins of what has been. If you listen closely, you’ll hear our whispered stories.
In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the