In past columns, I wrote about moments of absolute hopelessness — no more prevalent than the times when hemophilia reared its ugly head in my sons’ lives. There were many instances when powerlessness dominated my thinking as one of my sons screamed out in pain because he felt like little, sharp needles were constantly penetrating his skin. The searing points of distress seemed never to let up. As a father, continuously treating muscle and joint bleeds appeared to be our new normal. The times of chaos proved challenging at best, and overwhelmingly soul-crushing at worst.
Years later, as I reflect on the many nights in hospital rooms, one question consistently comes to mind. How did I find the hope I needed to move past the feelings of despair? Do not get me wrong, it is great to be in a place where quality of life continues to drastically improve for my “stinky” boys. But I return to the question: How does an attitude change occur? I want to go beyond the surface level answers and dig into the power that unites our community. How do we move beyond overwhelming despair?
My journey from hopelessness to joy started with the realization that my heart felt broken. How could I begin to heal when I could not honestly own my feelings? In moments of personal reflection (prayer, meditation), I found possibilities to move forward by being brutally honest with myself. The more I could honestly speak, the better my chances of finding hope.
This realization did not come easily. The boundaries that I placed on myself included a nonjudgmental space. I owned my feelings without feeling guilty or attempting to manipulate my thoughts into a pseudo-happy place. Before turning toward hope, I had to cry out in anguish.
An essential element of my process is not to set time limits on my grief. My experience often compels me forward too early. I want to reach happiness and not wrestle with the messy stuff. To become entirely whole, I knew that the most formidable work would serve as the foundation for the happiness I sought.
Throughout my time in ministry, I’ve relied on a statement that serves as my spiritual compass: Time is out of my hands. I must depend on truths, which I profess or dismiss as little fairy tales. I hold on to the assurance that I will not remain in one emotional place forever. The fluidity of life presents new circumstances and challenges. There is time to “rest by the quiet waters of peace.” The only requirement for moving to pockets of respite is to follow the journey in its entirety. There can be no shortcuts.
Having poured out my pain, I must sit in quietness to receive whatever message the universe sends to me. Notice the word “quietness.” It is a compelling word because I must sit with my chaos until there is a renewed spirit, a moment of personal revelation. Many times, it takes a series of moments of practicing stillness until we sense any hope. It is OK if it takes a while. The best things in life are worth the wait.
The journey was never guaranteed to travel straight from point A to point B. There are many twists and turns in the process of moving to wholeness. What matters is trusting that the best is yet to come. This moment of reckoning has as its cornerstone the ingredient of hope. If on these foundations, we build perseverance to remain on the journey and faith that we will not stay in a place of despair, we discover a new reality that offers promise and, at its core, a renewed heart.
Note: Hemophilia 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 Hemophilia News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to hemophilia.