I turn 50 this November, and one of the key things I have learned is that we as human beings totally underrate our ability to overcome tough situations. I have yet to figure out why we keep falling for the belief that life is all about success. (Check back when I turn 70.) I am not saying that striving for success is bad, but the yardstick we use to measure our successes needs to be reevaluated.
T.S. Eliot wrote, “Success is relative: It is what we can make of the mess we have made of things.” I love this quote, especially because I have had to crush and chuck away the success yardstick I used until 2013, when my husband received his hereditary amyloidosis diagnosis. That bull**** measuring wand I had applied to my life no longer worked.
I can no longer plan for that beautiful house on the hill I wanted. I can no longer aim for that luxury crossover sport utility vehicle I so desired. I could no longer rub shoulders with the posh moms at the private school my kids attended.
I could go on and on about the centimeters and inches I used to assess success for myself, but this ruler became a deep, dark chasm that I kept dropping deeper and deeper into with every decline in health my husband faced, with every activity he could no longer do, with every income we lost, and with every anguish he faced.
My husband’s condition — hereditary amyloidosis or familial amyloidosis polyneuropathy — is a diabolical disease that slowly thins out the sufferer until they no longer recognize their reflection in the mirror. The amyloid protein finds joy in clogging up the organ it chooses, progressively leaving its trademark. When my husband sees his reflection, he can quite easily see the face of amyloidosis, not of himself.
At some point during my plummet, I must have caught sight of the wall around me, reached out to a rope, gripped it, and broke my descent. The internal rope must have always been there, but I failed to notice because I was too busy looking at my yardstick.
As I gripped this rope, I must have had to make a decision to use it to either break my fall or climb back up. I must have chosen to ascend. Though I am not fully out of the well, at least I am a lot higher than I was yesterday.
As a carer, we really must search and dig deep for this internal courage or rope because, trust me, we all have it. This rope may be of different types — yours may be single-braided, diamond-braided, hollow, etc. — but nothing can change the fact that we all have something we can grasp hold of when life seemingly looks like crap.
To every single person reading my humble column, allow me to speak into your life. I implore you to recognize that amid the disaster before you, you can be the agent of positive change. Success is essential, but as T. S. Eliot pointed out, it is relative, which means how we apply it can change.
For me, success is laughing at a dad joke my husband makes, catching him from falling when he gets weak, making clinicians pay attention and advocate for amyloidosis awareness, and seeing the happy faces of my children. Achieving success is no longer my sole aim in life, and I have amyloidosis to thank for this. Now, I want to strive for significance, because being significant lasts longer than being successful. The impact is far greater.
“What counts in life is not the mere fact that we have lived. It is what difference we have made to the lives of others that will determine the significance of the life we lead.” –Nelson Mandela
Note: FAP News Today 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 FAP News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to familial amyloid polyneuropathy.
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