Article No. 426
8 April 2021
Another day, much the same as yesterday. Apparently it’s time to switch things out and change my mindset. It’s too easy to get lost in routine, and forget to savor the sweetness of life while those moments linger. They seem to pass so swiftly with the everyday bustle of life.
Everywhere we look, social media seems flooded with photos and videos of people leading what looks like a ‘charmed life’. I’m not buying it. While atypical HUS may have stolen any semblance of a charmed life with its devastating effects on my family, I’m still determined to create our own ‘charmed moments’ as often as possible.
Perhaps few know that concept better than people within families dealing with the peaks and valleys of atypical HUS. Within the ordinariness of our daily lives is our certainty that the uncertain is bound to happen. How will today’s lab values be? How long can kidney function be maintained without another aHUS ‘hit’, before built-up damage leads to a need for dialysis? If you’re an adult diagnosed with aHUS, people don’t understand the fatigue that defines your day or how your work week must flex around treatment schedules. Parents of a child with atypical HUS look and act so much like their classmates, that other parents can’t even fathom that your child has a very rare and life-threatening illness. (“Yes we’d love to get together for a playdate, but today’s labs haven’t come back so we might be at the hospital for treatment tomorrow.”) Families dealing with aHUS try to forget our biggest unknown, that some cases relapse or may go into remission as mysteriously as when the disease is triggered by an infection or sequence of events.
It’s so easy to fall into the trap of spotting a beautiful moment in someone else’s life, envying that brief instant and desiring with every shred of your inner self some wondrous thing or feeling which seems so elusive. At that very second in time you may shout within your heart, “I want a charmed life too!”. But there’s no magic wand to wave away stress and concerns, and all you feel is an empty echoing back.
I haven’t checked eBay under the search term ‘charmed life’ because I’m pretty sure there isn’t a listing, not offered at any price. Nor can it be found at the Mall stores, or at the bottom of a glass of red wine. I think I once spotted it among some chocolates, but it melted in my mouth before I could hold it tightly in my hands. I’m pretty sure that a ‘charmed life’ for me is reflected in the relaxed laughter of friends and family, having a lovely day that’s full of vigor and meaning, and especially in seeing reflections of joy fleet across the faces of loved ones.
It’s rare that I share conflicts that arise when atypical HUS activity seems to overwhelm my entire family’s lives. During one particularly serious turn of events about a complex issue, I spoke with a friend. “What are you going to do?”, she asked with concern and compassion. As every aHUS family knows, many issues occur where there is relatively little one can do and options are limited. “We’re going to have a nice weekend.” I firmly declared. I may not be able to control much about my loved one’s medical condition, but I certainly can have a marked impact when it comes to Quality of Life issues. We can choose to handle aHUS concerns with information and with grace, then move onward to create our own ‘charmed moments’. Refuse to let aHUS dampen the light in your eyes – celebrate what you have, enjoy the moment.
As my family and yours continue to struggle with the challenges of aHUS, we still are not exempt from the everyday difficulties faced by other people. Everyone’s got something on their mind, topping their prayer list, troubling their heart. Lost jobs, insurance worries, relationship issues – a multitude of problems provide stumbling blocks we too must work to overcome. In the midst of a weary day it’s important that we set the tone we want others to follow. Catch phrases such a ‘an attitude of gratitude’ fit, but decide to take action along with cultivating a positive mindset. It’s rarely easy but it is always rewarding. We may not be able to control our situation and the uncertainties aHUS brings to our lives, but we can select how we choose to react to life’s circumstances and realities. We don’t have to like all aspects that govern our reality – we just have to make a conscious choice to react in a positive manner that encourages our children, our friends, our families and even our medical staff to gain strength and hope while moving forward with an eye toward a brighter tomorrow.
Atypical HUS families may not live ‘charmed lives’ – but we can deliberately choose to create small ‘Charmed Moments’ each day. Here’s wishing you a peaceful moment of strength, floating upward on a warm breeze.