You Are Stronger Than You Think
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
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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.
Comments
Lucy nicholas
Brilliant Jaime! Absolutely brilliant! Xx
Jaime Christmas
Thank you Lucy for getting what I mean.
Don Kim
I am deeply grateful for what you pointed out. Well done, Jaime!
Jaime Christmas
Thank you Don.
Vince O’Donnell
Fantastic article my friend. So powerful.
Vince
Jaime Christmas
Thank you Vince! We are on this journey together.
Wai Leng Ong
From 2013, I have seen how the disease had robbed you both from having a normal life. You have grown from strength to strength, my dear 'sister', you have impacted on my life significantly ❣ I look forward to reading your weekly article and may you continue to influence, comfort, encourage all who read then.
Jaime Christmas
I would't be able to do what I do without wonderful people like you around me. Thank you for your kind words sister.
Karan chua
Hi Mei Mei, I should called u because I am “younger” than u. Since you say turn 50 this November. Btw great article... I love reading it and very meaningful.
Jaime Christmas
Hahahaha! Love it and thank you Karen!
Rachel Thomas
Jamie, This is an amazing article, which can be applied to all of humanity,Thank you !!
Jaime Christmas
You are amazing and sending you a huge hug!
Shirley Berman
Well said and well done, Jamie. Xx
Jaime Christmas
Means a lot to read your encouraging words and thank you. This awful disease is not going to take hold of us!
Alasdair Thompson
You nailed it (‘it’ being ‘what matters’) Jaime.
Alasdair
Jaime Christmas
Thank you kind sir. You have been a source of inspiration and pillar of strength for both of us.
Melinda Ponnampalam
Fantastic article Jaime. You are successful in many ways and definitely significant to many of our lives in more ways!
Jaime Christmas
Thank you Mel! We are on the journey together with this dreadful disease.
Jessica Teng
Reminds me slightly of the Marlow's Hierarchy of needs. In the end, we determine our own success and self-fulfilment. So inspired by what your family has gone through and what you are doing to generate more awareness to amydoilosis.
Jaime Christmas
Thanks Jess and you are right. As we mature, our outlook of life changes based on our experience.
Amy Lee
Your article have shown me that you are indeed an Iron Lady. 😁Having been living abroad and so far away from family all this years I know it was not easy however it has lead you to become the person you are today. I am so proud of you as I know not many is capable to overcome such challenges in life especially involving our most loved ones. As your sister living so far away I can only pray for all of you to be safe,healthy and happy always.
Jaime Christmas
Love you
Raj Narayanan
So powerful. Thank you for sharing.
Pamela Cairney
Hi Jaime
Your story tells who you are; a strong and determine woman who stands and stays strong. Thank you for sharing your story.
He makes my feet like the feet of a deer; he causes me to stand on the heights.
2 Samuel 22:34 NIV
Blessings
Anita Olson
Thanks Jaime for sharing. You are significant! Continued strength, endurance and blessings in your work. Miss you guys. Love.
Pam Thompson
Thank you for sharing your advocacy journey. My grandfather passed away from hattr, my father, and my brother also but my brother was the only one who received any treatment albeit after the disease progressed too far. As his advocate I learned a lot. Unfortunately I have to use info gained while trying to help him on myself now. With strong advocates I hope my children’s lives will be helped. I am trying to do as much as I can while I’m still here. I appreciate your efforts!
Jaime Christmas
Hi Pam, thank you for your kind words and for sharing your journey with me. My husband lost his father, aunts, uncles and cousins to hATTR. Be encouraged that there’s at least treatment available now for you and your children. Take care and keep strong.