Facing the reality of dying, as we all know, can be incredibly challenging. Kara spent a significant amount of time reflecting on her own mortality. From a young age, she understood that those grappling with severe M.E. often faced uncertain futures.
I’m not sure when Kara realised that M.E. was going to kill her, she definitely knew a good few years before any doctor identified the fact. I still vividly remember the haunting night when she shared with me the heart-breaking news that she believed she would die young. I was just 18 at the time, and her words have stayed with me ever since, echoing in my mind with a deep sense of loss.
Kara had returned home from university for the summer, giving us precious time to reconnect. We cherished the evening spent cooking, sharing meals, playing games, and laughing until our sides hurt, but as the night wore on, the mood shifted to something more solemn. With Mum and Dad tucked away in bed, we instinctively lowered our voices, creating a quiet space to share our thoughts and feelings.
Kara shared her heart-wrenching thoughts. “I don’t think I’m going to have a long life.” “How could you know that? Have you been to the doctor again?” I asked, concerned. She chuckled softly, “No. I’ve done my own research. I might get to 30. Maybe 40. But, this is going to kill me.” “Have you talked to Mum and Dad about this?” I probed gently. “No. I don’t think they’re ready. They’ll figure it out,” she replied, her eyes glistening with unshed tears. In that moment, we both broke down, holding each other close. We intertwined our fingers, pledging silently to cherish every precious moment we had together.
Not so many years later, Kara found herself bedbound with round-the-clock nursing care, and we embarked on a deeply honest conversation about death. I remember her carer being quite taken aback by our openness regarding Kara’s impending fate. We even managed to share some light-hearted moments amidst the seriousness of the discussion. Kara gently remarked, “Oh don’t worry. We cried our tears many years ago, didn’t we Emily? We knew I was going to die young a long time ago.” It was indeed a realisation we had long accepted. While it didn’t erase the pain, it seemed that Kara and I had collectively chosen to embrace laughter as a way to cherish our remaining time together, rather than let worry and sorrow overshadow our moments.
Our time together, leading up to her passing, seemed to stretch endlessly in that moment, yet now it feels like a fleeting instant. I would give anything to revisit those cherished memories and experience them once more. Often, I find myself longing to return to the days before we faced the heart-wrenching reality of her illness, before M.E. took its relentless hold. I yearn for the simplicity of our childhood, where we laughed, joked, and played, blissfully unaware of the challenges that awaited us. Those moments were filled with innocence and naivety, treasures I wish I could hold onto forever.
Brighter days graced us a month before Kara’s passing. We were doing what we loved best: cherishing the moments we had together. I would sit by her side, offering a comforting hug when she needed it, sharing in her groans and tears as we navigated the depths of our emotions… but most importantly, we would reminisce about the beautiful memories we created together. Those moments of joy before the weight of sorrow. It took all my strength to share my song with her, a heartfelt tribute to our journey – “Brighter Days.”
It is a song that captures the essence of what our lives have evolved into, with me sitting close, reminiscing about some of the most cherished moments we’ve shared. I hold onto those memories of joy tightly. She expressed a desire to include it in her album at that very moment. Many of Kara’s songs reflect her personal journey, yet I sense she yearns to give voice to the experience of being a family member.
Witnessing our loved ones endure suffering is incredibly challenging as a close friend or family member. It often feels difficult to find the silver lining, particularly when everything seems so disheartening. However, none of us wish to dwell in sadness constantly; it can be truly draining. Thus, as a family, we frequently find solace in laughter and conversation about brighter days—both those ahead of us and those we’ve lived through. It’s our way of supporting one another and navigating this journey together.
Kara Jane 