In Earnest Hemingway’s novel “The Sun Also Rises,” Jake is in love with Brett, a beautiful woman who has, um, desires. Unfortunately for them, he has a war injury that has rendered him unable to meet those desires and perform sexually. He struggles with the loss of his masculine identity. He was a very heroic and decorated soldier during the WW I conflict. But, he and his lover never really come to grips with their situation, and eventually, she moves on. (Yet another tragic loss for the character.)
This tremendous, almost overwhelming, sense of loss of his masculinity completely derails his future prospects and plans. Like almost all of the characters in Hemingway’s tale, Jake looks perfectly healthy, but he is battling with those all-knowing, self- focused demons that prey on our innermost insecurities. Couple this emotional struggle with actual health concerns, and the potential to simply crumble grows daily.
But, to the outside world inquiring about us, our common response is usually both the most courteous, brief and often inaccurate: “I’m fine.”
It is difficult, if not impossible, to fully grasp other people’s health issues. We can’t really understand these challenges since we are not directly experiencing them. Answering anything other than “I’m fine” is not “normal,” and just makes people uncomfortable. Society expects normalcy. Quick, normal responses from others expedite our ability to stay focused on our own issues. Anything that doesn’t work that way becomes uncomfortably messy and demands that we adopt a flexibility in attitude, approach, and action that saps our available pool of time to self-focus. “I’m fine” is just so much cleaner and faster and, frankly, what we want to hear back. So, on that day that I asked how one of my best friends was, I didn’t expect to hear anything else.
“I have MS.”
Wait. That wasn’t what I was supposed to hear. You look, talk and act just “fine,” and I expect that as an answer. Let’s try it again.
“The doctors confirmed I have MS.”
Admittedly, I had an initial pause remembering just what MS was, but I responded as best I could at the time. I knew it was a serious, progressive neurological disease and had major long-term implications. Later, I refreshed my recollection of just what is involved with MS so I wouldn’t confuse it with any of the other of the ever-growing list of medical abbreviations. It was as bad as I remembered.
Multiple sclerosis (MS) is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body. The cause of MS is still unknown – scientists believe the disease is triggered by an as-yet-unidentified environmental factor in a person who is genetically predisposed to respond.
The progress, severity and specific symptoms of MS in any one person cannot yet be predicted. MS symptoms occur when the immune-system produces inflammation that can damage myelin, (the protective insulation surrounding nerve fibers), oligodendrocytes (cells that make CNS myelin) and sometimes the underlying nerve fiber. The damage caused by inflammation can produce symptoms that resolve over weeks to months… or symptoms that become permanent. Two-thirds of people who have MS remain able to walk, though many will need an aid, such as a cane or crutches, and some will use a scooter or wheelchair because of fatigue, weakness, balance problems, or to assist with conserving energy.1
MS is: Unpredictable. Often disabling. Unknown. Maybe permanent. Can. May. The unknowns are so serious, but still… just hang there.
In discussing his symptoms and treatment plan, I discovered that anything touching him caused pain, but especially in his feet. (Barefoot golf: A brave new adventure.) A little later, he admitted that anything touching him literally meant anything, so, just as in Hemingway’s novel, sex was now off the list, and he was concerned about his wife, his marriage, and his own masculine identity. All these concerns were suddenly pushed onto a person who still looks just “fine,” but now carries a full load of physical, mental and emotional weight in a failing body. Even with great doctors and meds, that potential future is not comforting. It is a very dark, unknown place.
For anybody whose literal life and limb are to be changed forever, this can be an agonizing and ongoing struggle. If they do come to accept the facts, they must learn to live life with the way things are, not the way they were. Those are now only fond memories. Their partner must also come to grips with this new reality, and they together must accept and adjust to their new future. Plans, dreams and daily routines completely change. Your thoughts dwell constantly on how good or bad you feel at that moment. It is simply exhaustive.
So, the next time you ask someone how they are doing, really listen for the true answer.
And be aware that we all have our burdens, and some have the capacity to carry so much more than I ever could or they should have to. Be kind in your judgments and slow in your criticism. And listen. Our lives can turn around on something as benign as a phone call. And suddenly, we may have to endure a consuming physical and emotional load, all the while mindlessly meeting others expectations by parroting:
“I’m fine.”