When Faced With Trials as a Caregiver, I Embrace Resilience

Some life events create impressions that stay with us forever. Our experiences, encounters, and journeys mold our character and hone our personality, making each of us into who we are today.

What makes or breaks us when we face trials may be influenced by the particular calamity, but much of the outcome depends on how we react and which decisions we make.

Theodore Roosevelt said, “Character, in the long run, is the decisive factor in the life of an individual and of nations alike.”

When I embarked on this journey of documenting my experience as a caregiver to my husband, Aubrey, who has hereditary ATTR amyloidosis, I never expected that it would require me to dig deep into my thoughts and emotions in order to frame my words and intentions while writing.

As much as I want to relay how miserable and difficult things can become at times, I also refuse to convey a pessimistic outlook every time I express myself, because I have never been a negative person. I believe there is a reason for everything, and no matter how desperate our circumstances may become, if we reach out far enough, something, or someone, will always be there to hold our hand. Resilience is a trait I have learned to embrace.

When I was working toward my psychology degree, I learned about the late scientist and professor Norman Garmezy, who is recognized for his work in developmental psychology, including coining the resilience theory. Garmezy said resilience is “not necessarily impervious to stress,” but rather “designed to reflect the capacity for recovery.”

Not much can beat the stress of managing a debilitating condition such as amyloidosis. However, by taking into account the theory of resilience, I can acknowledge that hardships exist, but how I handle and adapt to them is key to achieving a positive outcome.

In fact, the road to resilience likely involves considerable emotional distress. Rather than deflect and pretend that there aren’t any problems, I recognize each issue and view it as an opportunity for profound personal growth.

Being resilient means that I have to:

• Acknowledge that I need help, and be able to receive it when it’s offered. I cannot go on this journey alone. Family and friends provide amazing support. With their help, I find purpose through my pain.
• Take good care of my health. Stress is as physical as it is emotional. Being in poor physical health does not help my emotional state. Eating well, sleeping a lot, and working out are three key activities I consistently focus on. When I am healthy, I become a better and more caring caregiver to my spouse.
• Be mindful and intentional. I try to reflect on what I am grateful for each day, because when I feel encouraged, the challenges I face become less daunting.

Our journey as caregivers may not be normal, but I am here to tell you, if you are in a similar situation, that you are stronger than you think. Do not give up. Strive for resilience, because whether you are a sufferer or carer, love and life are worth fighting for. You can do this.

Jaime and her husband, Aubrey, in South Island, New Zealand. (Photo by Aubrey Christmas)

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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.