Having a genetic disease is one of life’s greatest calamities. I say this from my own experience, having been married for almost 27 years to someone who was diagnosed with hereditary ATTR amyloidosis in 2013.
The mutated gene that took the life of my husband on May 22, 2022, and conscripted me into his caregiver now continues to haunt me. I believe that any of our four children also could carry it. The burden of this reality taunts me like an overcast sky, the air thick with something dire, and I recognize that the storm will break in due time.
The only hope I have for them is that when the disease starts taking hold, modern medicine will present a cure. It must. I cannot live another lifetime of seeing them go through the same fate as their father.
Aubrey and I were married in March 1995 in Malaysia. One month before popping the question, he confessed that his grandmother and dad had died from a rare condition. Back then, there wasn’t any label for the disease — identifying the misfolded protein was not feasible in Malaysia, where they lived. The disease possibly took the lives of other family members. Both of us, naive and in love, decided not to fear something that may not touch us. Looking back, the future held so much promise.
It was only later, after we started having children and heard talk of another aunt falling sick with the same symptoms or a cousin who had undergone testing, that the reality began to take hold of our hearts. Yet we assured ourselves that Aubrey was immune to it. If we lived right and did well, this “strange” illness would not befall us. How wide-eyed and ignorant we were.
In 2013, almost a year after the loss of his brother, Aubrey sat down to breakfast and, for the first time in his life, couldn’t taste the flavor of his food. Just like that, our greatest fear came through. The storm finally hit. Aubrey and I were tossed into a space where we both were briefly lost.
When the dust finally settled, and we each came to terms with the reality of our situation, we decided that our only option was to find purpose within the new season. No matter what, we would stay committed to our relationship, especially our four children.
Looking back, I can pinpoint three coping traits. These avenues of life came about organically as Aubrey and I embarked on a learning journey. Life decisions sharpen when your days are counted. Once we overcame the fact that his condition was terminal, unless a cure came along, the tempest within us calmed.
Patience
With his declining health, Aubrey experienced fatigue and severe light-headedness. The sudden drop in his blood pressure, coupled with unexpected insulin spikes, made it a challenge to do things outside of our home. Keeping to appointments was also tricky. We never knew how he would feel.
We learned that we had to be kind to ourselves. The demands of life will always be there, so when the unexpected happens, embrace it. Dial into the present and look at the positive. When we couldn’t make it out, we’d find a good movie on TV and make popcorn. If we ran late for a consultation, we called ahead to explain. It is OK to reschedule. People will understand.