It’s amazing how learning a simple word or two can drastically change your experience of life. I’m sure at some point or another we have been around a child who has learned to speak the word “no”. Soon every encounter or exchange is coloured by this word as the child learns, by practice, what the word means and when they can and cannot use it. By the end of this stage parents and loved ones are at their wits end and the child’s world is forever changed by his or her knowledge of a simple two-letter word.
From there the child rapidly absorbs countless words with each new word adding to the child’s ability to understand and articulate their experience of the world around them. As adults the speed at which we learn new words slows to such a slow trickle that when a new word (or words) comes our way that significantly impacts our life experience, we can distinctly remember the time and place where we learned it. Many of us remember, for example, that fateful day more than ten years ago where we first heard the words “Al Qaeda” and when we heard the word pair “nine eleven” in a whole new context that would alter Western Civilization as we know it.
Yesterday I had one of these experiences where I learned two new words that have changed my experience of life: “Wegener’s Granulomatosis”.
Wegener’s Granulomatosis is a rare auto-immune disease in which the immune system attacks medium and small blood vessels in the body. The primary areas that are affected are the lungs and kidneys and chronic renal failure is one of the potential outcomes of the disease. Wegener’s Granulomatosis can be fatal, it is incurable, and it is treated by suppressing the immune system with some pretty heavy duty and toxic drugs. The disease is notoriously hard to diagnose, is quite rare, and it typically hits white men in midlife.
This word was painfully added to my vocabulary when I received a phone call in which I was told that my beloved Uncle Tim has been diagnosed with it and is currently fighting for his life in the hospital.
Wegener’s Granulomatosis. It is bizzare that these two words that meant nothing to me 48 hours ago now make my heart ache and the room spin as I type them out in this blog. Just like the child who interprets everything through the lens of his or her newly discovered knowledge of the word “no”, Wegener’s Granulomatosis has become the lens through which my day is experienced: it provides a heaviness that cannot quite be escaped and it impacts my ability to focus on any one particular task for a long stretch of time. My life was simpler and it was a whole lot better before I knew these words. Yet even in the midst of my own troubles I know that my experience pales in comparison to the way the words Wegener’s Granulomatosis have impacted my uncle’s immediate family: his wife, two young adult girls, and his father and mother.
What I also know however is that seeing all of life through the lens of one or two words is a passing phase. Even as the child adds words to his or her vocabulary and does not remain in the “no stage”, so too will my uncle’s family and I emerge from this experience with a more complete vocabulary. New words like “immunosuppression” –the treatment strategy for WG—are already being added to the family lexicon. As a family we will also learn that old, familiar words have more depth to them then we could ever imagine. Words like trust, hope, life, perseverance, battle, prayer, family, love, and thankfulness are already starting to take on new levels of meaning in my own imagination. This list of words reminds me that life cannot be defined by one or two words alone—even words as big and as scary as Wegener’s Granulomatosis.
I know that my uncle’s life has been forever changed by these two words. No amount of wishing or praying can every bring him, me, or his family to that place where those words were not a part of our vocabulary. My prayer and hope however is that we will soon get to that place where his life is not defined solely by them. I know that in his journey with this illness that his God is with him, that his wife and girls are with him, and that the rest of his relatives like me are with him and that we will all do whatever we can to allow him to experience life faith, hope, joy, and love even in the midst of his illness. My prayer is that these words will continue to define him far more than Wegener’s Granulomatosis ever will. Get well soon Uncle Tim. Our prayers are with you.