Looking for Threads of Hope When Crisis Hits

Looking for Threads of Hope When Crisis Hits
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“I love you. If anything happens to me, you know where I keep the account details.”

My husband uttered these parting words as I dropped him off for admittance into the hospital in April. His severe fluid retention had caused his feet and abdomen to balloon up while his heart dangerously struggled.

Little did I know that, due to COVID-19 protocol in New Zealand, patients were not allowed visitors — at all. For the next 14 days, he would be alone in his hospital room without his family.

We live in challenging times. Many of us have heard or even said this while discussing the impact of COVID-19 on our lives and on the lives of people around the world. This virus has proved that nothing in life is guaranteed or permanent. What may look mighty and strong can crumble in an instant. All it takes is a microbe to reveal the fragility of what lies behind.

COVID-19 radically upended what we deemed as “normal.” Now, many of us are questioning our belief systems and are being pushed to step outside our comfort zones.

I could already see my husband’s apprehension and concern in the lead-up to New Zealand’s first lockdown. It is a huge challenge for him to manage both amyloid polyneuropathy and cardiomyopathy, but in addition to that, he is also on immunosuppressive medications because of his liver transplant four years ago. He is clinically vulnerable and has a high chance of falling ill.

Hence, the moment we heard community transmission was occurring in our locale, he was confined to the home and our family took precautionary measures to ensure he was not at risk. This meant our working adult children had to move out temporarily, and those who couldn’t confined themselves to an allocated section in the house to keep exposure at bay. The whole house smelled like hand sanitizer.

Physical interaction with friends also came to a grinding halt. The already limited social activity we both enjoy was taken away almost overnight. No dining out, no mingling at church, no retail therapy, and no weekly group card games. For the next month of lockdown, we had only each other and our two dogs for company.

Isolation has its joys and sorrows. For hereditary transthyretin amyloidosis sufferers, lockdown can be more trying than it is for the average person. People like my husband must manage on their own because it is difficult to obtain access to medical care and medicine.

During the pandemic, both patients and carers may face added mental and physical stress. Carers like myself can feel like we are letting down our loved ones, because we have to step up even more and assume added roles to ensure the overall well-being of everyone at home.

Nevertheless, this sudden pivot to an extra cautious way of life is our only option for moving forward. As difficult as things have become, we all must learn resilience in the face of adversity. No matter how bleak the outlook may seem, we must always look for threads of hope.

During his 14-day stay in the hospital, my husband created relationships with those he came into contact with: patients, nurses, and doctors. Despite the position he was in, he managed to look beyond and found purpose in his pain. Perhaps he saw the threads of hope and used it to weave a beautiful pattern for himself and for those around him.

There is always purpose in everything that happens, both good and bad. I do not claim to know it all, but maybe the solution to our adversity rests within us, and we can become an agent of change.

Whether a carer or a patient, what are we doing to change our situation? Are we allowing what is happening around us to dictate and to determine what is going to happen? These are difficult questions to answer, but they are also very necessary to ask ourselves.

I have no clear solution, but I do know that when crisis hits, I am determined not to let the problem get the better of me. I refuse to, because I am adamant that something can be done even until the very end.

“When written in Chinese, the word ‘crisis’ is composed of two characters — one represents danger and one represents opportunity. … Along with danger, crisis is represented by opportunity.” ― John F. Kennedy

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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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