Embracing Life with MS, One Chopstick at a Time

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“If you find savoring delicious food to be a skill then we must be related.  There is something to be said about sharing the joys and accomplishments from the day over a warm meal.”

Every month, I like to treat my son to a new restaurant. We sample a plate or two, then recreate the meal at home.  Over the past few years, my son has developed a deep fondness for Japanese cuisine, artwork, language, and culture.  Sharing in his excitement, I planned a trip to the Smithsonian Yayoi Kusama (One with Eternity) art exhibit, an excursion that would conclude at one of our favorite Japanese restaurants.

As we eagerly approached our table, I could feel intrusive negative thoughts swirling, making every attempt to grab my attention.   These attention-seeking negative feelings were, in fact, merely trying to expose my anxiety.  Ever since I was diagnosed with Multiple Sclerosis, there have been times when I have quietly whispered to myself, please let me enjoy this moment without any MS interruptions.

I recall challenging my thoughts at that moment. Since I managed to get through an art exhibit, clearly, I can spend time eating dinner and holding chopsticks.  As I sat in my seat, I noticed a fork paired with my chopsticks, which I like to label my backup utensil. Those utensils and I became familiar with one another.  I desired to fully immerse myself in the full experience provided to me by the setting, so I gently reached for the chopsticks. Those decorative chopsticks slipped into my fingers perfectly.  As I began to reach for my appetizer, I realized I faced a challenge.  MS tapped my hands, which caused my perfect pinch and coordination to abandon me. What was once a source of delight had become a source of frustration. My son asked if my “sticks were working” because I was holding them “funny.”  Hiding behind my embarrassment, I said, “Oh, I’ll ask for a new set of utensils; perhaps these are defective.”

Upon a second attempt, I dropped everything from my chopsticks, except a grain of rice, onto the table. I silently mouthed to my chopsticks as if they were a person…

“It’s not you, dear chopsticks, it’s me. I thought you were an extension of my hands!”

You see, I was determined to find humor in this very delicate moment.  I wanted to mask my moment of disappointment and tried to soothe myself by thinking about the immeasurable joy we had throughout the day and keep it alive. I did not want MS to intrude, as it sometimes does.

One of the common symptoms of MS I often experience is the loss of dexterity and overall hand control. It is important to remember the function of the CNS is to receive sensory information such as smell, sight, taste, sound, and tactile information through receptors.  These receptors ‘report’ back to the brain, which allows things to move with thought and action.  How this affects hand dexterity is important.  If you think about cooking, you know that if your hand is placed over a hot stove, your normal reaction is to move your hand quickly. If the messages are impaired then this will cause an interference with incoming sensory signals, making it difficult to respond to the heat with an expected defensive movement.

When I noticed my gradual loss of dexterity, I prioritized speaking with my neurologist about how I could adjust to the changes.  Of course, I was concerned that the damage to my dexterity caused by MS would remain. I, however, was determined to seek answers. Upon advice, I sought and received therapy from an occupational therapist.  We worked for months on several hand exercises that support and improve overall dexterity function.

The true joy in using chopsticks, for me, wasn’t just about mastering a skill; it was about the bond it forged with my son and asserting that MS would not stop me from fully indulging in this experience with him. Further, it cultivated a deepened appreciation for my ability to use of my hands—a gift I have learned not to take for granted.

After that, my eyes were opened to a world of possibilities that existed just beyond any of my limiting beliefs. I began to dream big – I was determined to experience the rich Japanese culture in person and share an international journey with my son. Despite my initial preferences for familiar comforts, I gradually faced my fears of international travel and embraced the courage I had gained from learning to eat with chopsticks. Thus began my preparation for a trip to the Land of The Rising Sun, Japan.