My cabinet holds more than just Gaucher disease treatment supplies
It's a reminder of my rare condition, but also of what I've overcome
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It seems silly to write about a corner in my house. Most people walk by their cabinets every day without giving them a second thought. If they do, they might think, “I should clean this out today,” “I want new dishes,” or “Maybe we should remodel.” I never thought one cabinet in my house would have such an impact on my life.
When my husband and I bought our home back in 2008, we had a list of must-haves. We searched for more than a year because we didn’t want to rush the process. We carefully weighed the pros and cons of every house, every yard, and every school district. We wanted more than a house. We wanted a place to build a life together.
One thing that drew us to our current home was the large kitchen with a big island and seemingly endless cabinets. I could picture friends gathered around the counter, laughing over dinner while I pulled out dishes, wine glasses, and platters. I imagined those cabinets would hold everything we needed to celebrate birthdays, holidays, and family traditions. I truly love to entertain, and we knew we wanted elements in our home to reflect that.
But I never imagined that one small cabinet beneath the bar sink would become the most valuable spot in our home.
What the cabinet represents
In 2010, I was finally diagnosed with Gaucher disease, a rare, inherited, genetic disorder. After years of unexplained symptoms, I finally had an answer. I was relieved to finally know what had been happening to my body, but it also meant facing the reality that I would be managing this disease for the rest of my life.
Two years later, I began receiving infusions of enzyme replacement therapy every two weeks. Almost overnight, this silly cabinet underneath our bar took on a new purpose, becoming home to alcohol wipes, saline flushes, IV tubing, syringes, needles, sterile water, and self-adherent wraps.
Every two weeks, I made the same phone call to reorder everything I needed. A few days later, an oversized brown box would arrive at my door, filled with reminders that this treatment was forever. The boxes wouldn’t stop coming. Sometimes it bothered me, but other times it was simply part of the routine.
From the beginning, I have kept the cabinet locked with a simple child-safety lock. Nothing special, just a piece of plastic.
There was no real reason to do so. Even when my children were young, they could have been taught not to touch the supplies. Still, I locked it every time. Looking back, I think I was trying to hide my diagnosis along with everything inside. If no one saw the supplies, maybe I wouldn’t have to face what they represented. Maybe I could pretend this disease hadn’t changed my life.
Even now, almost 15 years later, I still pause when I unlock this cabinet. Some days, I feel sad for the life I thought I would have. Other days, I’m frustrated that Gaucher disease continues to demand so much of my time and energy.
Despite my initial efforts to hide the condition from my children, they have grown up knowing exactly what is inside the cabinet. To them, it is simply where Mom keeps the supplies that help her stay healthy. They have never seen it as something to hide. Watching them cope has helped me see it differently, too.
The cabinet no longer represents the diagnosis I tried so hard to lock away. It represents every infusion I have completed, every obstacle I have overcome, and every time I have chosen to keep moving forward despite my chronic, rare disease.
It holds the supplies that help me slow my disease progression. It has witnessed the fear that came with learning to trust a treatment I would need indefinitely. It has been there on the days when I felt strong enough to run for miles and those when bone pain and fatigue made simply getting through the day feel like enough.
So when another oversized brown box arrives at my doorstep, I unpack each item, place it inside the cabinet, lock the door, and continue living the life I have worked so hard to build. The cabinet may hold medical supplies, but it also holds a quiet reminder that I am more than my disease.
Note: Gaucher Disease News 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 other 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 Gaucher Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Gaucher disease.
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