When the Sun Sets — Chronic Illness, Advocacy, and Mortality

Life. It’s fragile, fleeting, beautiful, and heartbreaking. It is the most precious gift we have.

Approximately one month ago, the senior columns editor for BioNews Services received her wings. Her name was Serena. Ironically, I never met Serena. We communicated only online. As I think about my journey thus far, several people have entered my life and heart virtually. The gist of this week’s column is to emphasize that we never know who will cross our path or the footprints they will leave along the way and after they are gone.

Each time I completed a column, I sent Serena a message. I would tell her to have a great week. She always returned the sentiment. As I recollect, the last message I sent to her remains unanswered. Days later, I learned that she was no longer with us. I was traveling with a fellow advocate the day I heard of her death and the news saddened me. The sense of loss remains. The reality of knowing I will never read “have a great weekend” again. Serena had words of encouragement if I was ill or endured a loss. She emanated empathy. In addition, if I asked her a question or needed guidance, she did so without hesitation.

It must also be said that Serena lived with chronic illness. She had pulmonary arterial hypertension. I knew this and read several of her columns. She wrote about her emotional and physical pain and her moments of joy. She wrote about her fears and frustration. It was Serena’s transparency I connected with. Serena was a young woman. I identified the time in my life that invoked the same feelings and concerns she expressed. Serena had a place in my heart and many others. I can’t imagine the thoughts that Serena must have had accepting her impending death. My condolences and prayers for strength are with her family, friends, and followers.

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From everything I have read about Serena through her columns, from her followers, and most recently from her friend, BioNews columnist and editor Bradley Dell, her spirit was greater than the illness she endured. Serena lived with intention, and although she struggled, she rejoiced in her joyous moments. I will always remember her smile. Serena is flying free, no longer afflicted by a limited, sickly earthly shell. Her untimely passing serves to remind me that it is the lives we touch and the manner in which we live that sustain legacy.

As an advocate, living out loud is complex. It is both liberating and debilitating. Existing from such an open space obliges vulnerability. It consists of confessing your fears, dreams, and wishes in real time. It is ponderous work. For this, I admire every single advocate. It is extremely challenging to confront our mortality. As a person with multiple sclerosis and heart disease, facing my mortality has never been an easy task. My faith gives me hope of an enduring life, not on this side of Earth, but rather in eternity. As I have written before, death is not my greatest fear.

In closing, as an advocate, we are often unaware of how intertwined our lives are. We struggle, laugh, cry, and triumph together. In times of loss, we mourn together. Rest in peace, Serena, and all others from the chronic illness communities who shared, cared, and impacted the lives of many. I will never forget you. I will see you at the sunset of this life and on the dawning of the next.

“What we do now echoes in eternity.” –Marcus Aurelius

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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.