Why I’m looking forward to celebrating my first Valentine’s Day
What true love looks like to me, through the prism of Duchenne
Amid a topsy-turvy start to 2024, I’ve marked a date on my calendar I’ve been looking forward to more than any other: Valentine’s Day. While it might not be a particularly significant day for many others, it’s a big deal for me. It’ll be my first time celebrating the day after unexpectedly falling in love last April.
I’ve written previously about how I see love as more than just physical romance; for me, it’s a profound emotional bond shared by two people. In my opinion, love is something that we Duchenne muscular dystrophy survivors experience in a unique way.
From a young age, our lives are inextricably intertwined with our care providers. Whether it is with a family member or a paid caregiver, our experiences include a range of emotions, including despair, hope, loss, and joy, which fosters an unbreakable bond between patient and caregiver.
Our often bittersweet and intense feelings of love may make it difficult for us to find a partner who accepts us and understands our plight. Living with Duchenne entails many things, and our partners must also navigate our darkest moments and excruciating pain. It means, at times, prioritizing the needs of the person with Duchenne at the partner’s expense.
Whether or not those of us with Duchenne ever find the kind of love that mainstream society celebrates, such as that typically acknowledged on Valentine’s Day, one thing is certain: We know what love is and what it feels like to be loved by another.
A rainbow in the storm
The new year so far has been nothing short of a nightmare for me. I’ve had withdrawal symptoms from tapering off antidepressants and steroids, which appeared with a devastating vengeance. This has led to many sleepless nights, emotional dysregulation, and mood issues.
My girlfriend, Amanda, has helped to prevent me from falling into the clinical depression I had suffered a couple years ago. Without her, I don’t know how I would have weathered these tumultuous events, which have also included my caregiver Glenda becoming ill and my grandfather’s death. I’ve been depending on Amanda’s love and support more than ever.
Amanda has been the light at the end of my darkest tunnel and has made my life worth living. I couldn’t be more thankful to her for coming into my life at a difficult time and giving me a new reason to hope for a better future. She helps me see brighter rainbows ahead amid my storms.
While the physical and emotional struggles from having a fatal disease will never disappear, at least there’s one person on Earth who makes my suffering and pain worth it.
As I look forward to celebrating my first Valentine’s Day with her, I am reminded that our love for others makes living with Duchenne a blessing in disguise.
Note: Muscular Dystrophy 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 another 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 Muscular Dystrophy News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
About the Author
Robert Smith
It's truly heartwarming to hear about your anticipation for Valentine's Day, especially given the significance it holds for you this year. Celebrating this day for the first time with someone special, after falling in love unexpectedly, adds a layer of excitement and novelty to the occasion. Amid the unpredictability that 2024 has presented, it's these moments of personal joy and connection that shine brightly, reminding us of the importance of cherishing the relationships that bring us happiness and fulfillment. May your Valentine's Day be filled with love, warmth, and memorable moments that you'll treasure for years to come. Here's to celebrating love in all its forms and finding joy in the unexpected.