We can find signs of calm in the storm if we remember to look
A columnist reflects on the many clues around her that brought reassurance
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Have you ever felt as though God or the universe was reaching out to offer you comfort? Whether you pray to Jesus, Allah, Adonai, or honor the gifts of Mother Earth, being in tune with your spiritual self can be a profound source of solace during the challenges of living with a rare disease.
As I prepared for a recent surgery to treat my superior mesenteric artery syndrome (SMAS), I found unexpected comfort in my lengthy health journey, which includes living with hemophilia.
Many factors make surgery stressful. SMAS is notoriously difficult to diagnose and often goes unrecognized. It’s not uncommon for medical providers to disagree about the diagnosis, especially if one has limited experience with SMAS. For patients caught between conflicting opinions, this can be extremely distressing, as it was for me.
The greatest challenge was deciding which provider’s judgment to trust. Ultimately, I followed my instincts, and I’m grateful I did, as everything turned out well.
As I prepared for surgery, I noticed small gifts of hope along the way. Each one felt like a reassuring message from the universe that things would work out.
For example, choosing a provider wasn’t easy. I had four top surgeons to choose from, and all were experienced in SMAS repairs and covered by my insurance. After careful research, I selected a surgeon at Baylor St. Luke’s Medical Center in Houston. Although Baylor doesn’t have a dedicated hemophilia treatment center, its hematology team was strong and well-equipped to manage my hemophilia A. To my surprise, my hematologist here on the West Coast turned out to be a close friend and colleague of the Baylor hematologist!
More than coincidence
This all felt like a wonderful sign that the surgery would go smoothly. There were concerns about potential delays due to logistical challenges in coordinating my hemophilia care. When my surgeon personally called me the day before my flight to Houston, I panicked, fearing he was calling to cancel the surgery. Instead, he took time out of his busy schedule to reassure me that the hemophilia monitoring plan was in place and that he was confident I would be well cared for during surgery. This was yet another moment that reinforced my sense of reassurance.
Another uplifting sign came from a local church I’m connected with. They were holding a raffle, and I decided to put all my tickets into the drawing for a farm share, which provides fresh fruits and vegetables in the spring and summer. I told my friends, “I’m placing my tickets here because I believe the surgery will be successful and I’ll be able to enjoy fruits and vegetables again by spring.” When I won the raffle, I was thrilled — it felt like yet another reminder that everything was truly going to be OK.
Additionally, I was able to secure affordable housing in Houston, in a warm, supportive environment just a 10-minute walk from the hospital. This allowed the people who were there to support me to easily walk back and forth, and we shared Friday night meals with our wonderful hosts and other guests recovering from medical procedures.
Some people may see these moments as mere coincidences, but I choose to view them as divine connections and sources of comfort. These experiences helped calm my anxiety and sustained me through a difficult time. They also gave me a chance to focus on gratitude and express it, even during a challenging medical journey. For me, those moments when I sense God or the universe speaking to me are beacons of light and hope.
These experiences remind me not to underestimate the power of spirituality in our journeys with rare diseases. For some, spirituality comes through organized religion; for others, it’s found in nature, the sky, or the comfort of loved ones. I’ve discovered that when I take time to quietly observe and seek out moments of comfort and gratitude, they’re always there, no matter how small. These moments light my way forward. The more I pause, notice, and give thanks, the calmer I become as I face life’s storms.
What helps you when the storms are raging? Please share in the comments below.
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 consult your physician or another qualified healthcare 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.
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