You Are Stronger Than You Think

You Are Stronger Than You Think
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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.

Jaime is a caregiver to her husband who is afflicted with the hereditary ATTR amyloidosis disease. Since his 2013 diagnosis, Jaime’s experience dealing with the effects of the disease on her husband and family have seen her go through many challenges in her vital role as caregiver. She’s required constant personal growth and flexibility to be successful in this complex, demanding, and stressful role. She is also the CEO and founder of the New Zealand Amyloidosis Patient Association, a not-for-profit charity formed in 2019 to promote and advocate for education, awareness, and treatment for patients and their families in New Zealand. Join her on this journey as she shares on the importance of being a caregiver, the role’s demands, how she’s risen above it all, and how everyone can do their part to ensure better outcomes for both the patient and caregiver’s health and well-being.
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Jaime is a caregiver to her husband who is afflicted with the hereditary ATTR amyloidosis disease. Since his 2013 diagnosis, Jaime’s experience dealing with the effects of the disease on her husband and family have seen her go through many challenges in her vital role as caregiver. She’s required constant personal growth and flexibility to be successful in this complex, demanding, and stressful role. She is also the CEO and founder of the New Zealand Amyloidosis Patient Association, a not-for-profit charity formed in 2019 to promote and advocate for education, awareness, and treatment for patients and their families in New Zealand. Join her on this journey as she shares on the importance of being a caregiver, the role’s demands, how she’s risen above it all, and how everyone can do their part to ensure better outcomes for both the patient and caregiver’s health and well-being.
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27 comments

  1. Wai Leng Ong says:

    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 says:

      I would’t be able to do what I do without wonderful people like you around me. Thank you for your kind words sister.

  2. Karan chua says:

    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.

  3. Melinda Ponnampalam says:

    Fantastic article Jaime. You are successful in many ways and definitely significant to many of our lives in more ways!

  4. Jessica Teng says:

    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.

  5. Amy Lee says:

    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.

  6. Pamela Cairney says:

    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

  7. Anita Olson says:

    Thanks Jaime for sharing. You are significant! Continued strength, endurance and blessings in your work. Miss you guys. Love.

  8. Pam Thompson says:

    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 says:

      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.

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