The Reflection of Me: A Daughter’s Tribute in the Face of MS

The journey of chronic illness has taught me that our families are greatly affected by our illnesses. Spouses, parents, siblings, and many others can attest to their personal stories of loving someone who is chronically ill. My inspiration for this week’s column was a discussion I recently had with my parents.

My husband and I visited with my parents after an appointment. I walked inside and headed straight to my favorite chair. The intense heat had taken a toll on me and I was in more pain than usual. I should mention that added to my fashionable ensemble was my walking stick gifted to me by my dear friend. That topic will be revisited in a future column.

Moving along, I lay across the chair and began having a conversation. My parents are saddened by the difficulties that I am experiencing. They reiterate that I am a survivor and constantly tell me I am going to be all right.

At times, I feel as though my parents are in denial about my MS disease. They know the basics and that is it. Neither of them has researched the disease, and sometimes that saddens me. It feels as if the proclamation “you’re going to be all right” dismisses my current condition. I shared my sentiment. My parents’ responses were “we have faith” and “we believe that our prayers will be answered.”

Of course, I wanted to delve further into this discussion but I was too exhausted to do so. I abandoned the conversation by telling my parents to believe as they must. I declared that I have faith, too, yet the current reality is that MS is progressive and incurable. On the way home, my husband and I continued the discussion.

I recall the day I disclosed my MS diagnosis to my parents. It was a day or so after I received the official diagnosis. I wanted to tell them in person and needed to make sure I had enough time to ingest the devastating news I had received. I will never forget the look in their eyes. Tears filled my loving mother’s eyes and her words were, “I wish I could take it for you.”

My loving dad, a man of few words with great strength, said nothing. He looked above for a second, yet his eyes revealed his truth. My parents were devastated. They were afraid. They were in shock. They assured me that we were in this together and that I was going to be OK.

It was important for me to reflect on this day because I realize that my parents had been in the same situation on multiple occasions with my siblings and me. Those moments in which their children or physicians revealed both life-changing and terminal illnesses. Instances in which their hearts broke into a million pieces yet they held it together. The moment when their parental instinct kicked in and they anchored us. They prepared to carry each of us through our storms while simultaneously surviving their own.

I thought of all the private conversations my parents must have had with each other and the millions of tears they cried. I cannot stop thinking of the unyielding prayers sent on our behalf. My mind cannot comprehend the weight of witnessing your children battle disease and all that comes with it, knowing that protecting them is out of your realm. The agonizing realization that all you can provide is love, encouragement, understanding, and a multitude of prayers.

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Denial can be deceptive. It can be both a burden and a gift. I now comprehend that in some cases, people operate from a space of denial in order to preserve their mental health. I also recognize that what feels like denial to me may be faith and positive thinking at its finest.

The biblical definition of faith is the assurance of things hoped for yet not seen. The exchange with my parents and the discussion with my husband opened my eyes. My parents must believe in and hope for the best-case scenario in order to preserve their mental health and to encourage me. It is imperative to maintain faith.

Reminiscing over my life revealed that it was the positive outlook and unyielding faith of my parents that set the foundation for who I am today. They taught me the meaning of perseverance. Each time I stare into my their eyes, I see the reflection of me. Strong, vulnerable, courageous, afraid, hopeful, and human. They were, and remain, the wind beneath my wings.

To the parents of children with chronic illness, you are applauded and appreciated. Thanks for encouraging your children. You are our strength in weakness, our light in darkness, and the rainbow in every cloud. Keep believing and keep the faith. At times, we need the reminder.

“Did you ever know that you’re my hero, and everything I’d like to be. I could fly higher than an eagle, for you are the wind beneath my wings.” –Bette Midler, “Wind Beneath My Wings”

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