I went to the ER this Tuesday because I felt ill, couldn’t catch my breath, and my heart was elevated all day; despite having a day of minimal activity, my body was convinced that I had just run a marathon for 3 hours and clocked in at 160 bpm. These are two symptoms that I have noticed throughout the past couple of months. However, I haven’t experienced them to this intensity or length of time. Normally, it’s a high heart rate every few hours vs. the presently rising number on Tuesday.
If I am being honest, I am terrified, and I guess that’s just another aspect of a progressive diagnosis. I don’t know if Tuesday was an off-hand occurrence due to lack of sleep, stress, or dehydration. Or will it be a new normal that I need to grieve and adjust to? Will my days be marked by the sheer exhaustion of my heart beating and attempting to catch my breath?
It’s a truly weird phenomenon to be stuck in the wait, all while knowing my future. With restrictive lung disease, I know that one day, I will likely rely on a ventilator to take each breath and will feel short of breath without it. But when is that point?
Luekodystrophy will likely impact my heart muscle and neurons responsible for keeping my blood flowing through my body. Am I at that point now?
Tonight, fear grips me. I’m scared of what lies ahead, grappling with the unknown that looms larger each day.
This is the ugly side of my journey. These are the feelings that we are often told not to talk about and to hide. I want to put on a brave face, but tonight, I just can’t.
Yet amidst the fear, there’s a quiet strength within me. It’s the same resilience that has carried me through every challenge and diagnosis so far. It’s what allows me to face each day with courage, even when uncertainty clouds the horizon. It’s the courage to confront these fears head-on, acknowledging their weight without letting them define me.
In moments like these, I find solace in knowing I’m not alone. There are others who understand this journey, who’ve faced similar battles, standing alongside me with empathy and understanding. Their support reminds me that vulnerability is not weakness—it’s a testament to the depth of human experience.
So tonight, as I navigate these turbulent waters of uncertainty, I hold onto hope. Hope for clarity amid the confusion, for moments of peace amidst the storm. And above all, I hope for the strength to endure whatever lies ahead, one breath at a time.