The Dividing Line of Diagnosis
Receiving a rare disease diagnosis is not only a life-changing event, it is a life-dividing moment. Suddenly, all the details of life fall into one of two categories: before and after.
Every memory and dream, all the old routines and new challenges are forever informed by that experience. It is a paradigm shift in perception and consequence that is permanent and pervasive.
Marking time, in B.C. and A.D.
B.C. and A.D. are the Western world’s labels for ancient history and modern times: before Christ and anno domini, which translates to “in the year of the Lord.” Something either happened in the hundreds of thousands or even millions of years before the first Christmas, or in the mere few thousand years since.
The whole wide world had slogged along forever, from the Big Bang to primordial soup to tectonic shifts to evolution to the emergence and ebb and flow of civilizations. Then, suddenly, the birth of one baby changed everything. There were and are various interpretations about who that baby was and what his legacy is. But every year and season of our calendar since acknowledges his existence and influence.
In our little world, my husband and I bumbled along for a quarter century in our relationship, from head over heels to commitment to challenges to contentment. Then, suddenly, the diagnosis of his atypical hemolytic uremic syndrome (aHUS) changed everything. We don’t know why he got it or what the ultimate result will be. But everything since — attitude, logistics, priorities — is seen through a new filter that affects all our plans and decisions.
That was then, this is now
Having just experienced the Advent and Christmas season, I am acutely aware of my husband’s chronic disease diagnosis. We used to celebrate — before complications — with friends and family. Now, after diagnosis, we’ve hunkered down and hibernated.
As we enter a new year, it is flu season with a cloud of COVID-19 in the air. Thus, we finished out the fifth year of his disease by spending the holidays alone, together. This is just one of many small consequences of the big illness that looms over us. I’m not complaining, just explaining. It’s different now and always will be.
A different kind of gift
It wasn’t like this before he got sick. Holidays were filled with people and parties and presents. We were different — carefree, optimistic, spontaneous, ambitious. The two of us were downright healthy, happy, and ignorant.
Then, he almost died from a rare disease that we have learned to live with. Now, we are a bit more cautions, wary, and wise. Even if he is cured someday, what has changed in us can never be fully restored — nor would we necessarily want it to be.
Everything that matters is more poignant, more precious now because we know how precarious life is. And we now recognize that anything that does not contribute to nurturing this life does not matter. We now appreciate every celebration, large or small, and celebrate every milestone, personal or cultural. The afterlife of diagnosis has been an odd and unexpected gift.
Note: aHUS 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 aHUS News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to aHUS.