She moved more slowly, or maybe more awkwardly than you remember. As she walked across the room, you noticed a hesitancy, a wobble, a strange hitch to her step. Is that a limp you’ve never seen before?
Her speech seemed a little slower, a little slurred, a little less distinct than last time you heard her. And then she strangely called the local grocery store by the wrong name, and even struggled coming up with your name.
Shaking your head you look at her, and wonder what’s going on. You take a good look at your friend and notice that she looks pretty run down, and more tired than normal.
“Are you ok?” you ask, perplexed about the sudden changes. Possible explanations race through your mind, but none seem to fit or explain what you’re observing.
Shrugging it off, your friend simply shares that she isn’t feeling well, and needs to rest, but assures you that she’ll be fine.
A few days pass, enough for any passing virus or bacteria to run its course, and you again see your friend. There’s nothing specific that you can put your finger on, but you just get a sense that all is not well. The energy and spark are missing, and it seems she is just going through the motions without her normal enthusiasm…..
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As I walked across the room, I wondered just how much I was giving away of my current condition. Concentrating on each individual step, desperately trying to stay balanced and not drag my left foot, I wondered if my affected gait was as obvious to others as it was to me. The pain and stiffness, combined with the heaviness of each step made walking challenging and cumbersome. Speaking with you, I do my best to form the words clearly and distinctly, but the thoughts don’t come as easily, and the mouth doesn’t cooperate.
I desperately want to greet you by name, you’re my friend, and I should know it, but for some reason I just can’t come up with it. And, did I just say “Safeway?” Our town doesn’t have a Safeway. I haven’t lived in a town with a Safeway for 8 years. I meant…..well, I can’t remember the name of that store.
I try to ignore your worried glances and concerned questions. I can only imagine what must be racing through your mind right now as you wonder about these weird changes.
“No, I’m fine, really. I just need to sleep and I’ll be ok.” It’s true. Sleep does help. And eventually this flare-up will calm down, leaving just a trace of its presence. Just like every other time. And when it’s gone, I’ll do a better job of covering up the lingering deficits.
The days of struggle, pain and symptoms continue, getting worse, not better. To anyone who just looks quickly, there’s no visible reason to explain their observations. I push on ahead, unwilling to let a diagnosis label and sideline me, but struggling with continuing pain, weakness, memory loss, vision issues, extreme fatigue and numbness. As the time and situation is right, I choose to share my struggles with individuals, but hesitate doing so, not because my MS is a secret, but because I don’t want it to define me. I don’t ever want to use that label as an excuse, or allow others to place me in a box.
For me, MS is usually a quiet, invisible disease that only a few know and can recognize. Sometimes when it lies dormant I forget temporarily its presence in my life. Other times it requires significant effort to keep its hold on me private and unnoticeable.
I choose to share this, not only because I find myself in the midst of yet another exacerbation, but more importantly, because it strikes me that many of our friends, neighbors, and family members also struggle with quiet, hidden challenges. And sometimes we don’t know anything of their interior struggles, but may only see hints here and there of something going on.
And don’t we all struggle with something inwardly – be it physical, mental, emotional or spiritual? How best to respond – to others, and even yourself? A popular aphorism (attributed to a wide variety of people including Plato, Philo of Alexandria and John Watson) sums up an excellent approach: “Be Kind, For Everyone You Meet Is Fighting A Hard Battle.”
