Since my husband, Aubrey, was diagnosed with hereditary ATTR amyloidosis in 2013, my journey as his caregiver has taken me to some difficult places. The biggest challenge has been letting go of my expectations of what our relationship should look like and accepting what it has become.
In “Six Hours with Rudyard Kipling,” Arthur Gordon quoted Kipling as saying, “The individual has always had to struggle to keep from being overwhelmed by the tribe. To be your own man is a hard business. If you try it, you’ll be lonely often, and sometimes frightened. But no price is too high to pay for the privilege of owning yourself.”
Expectations are the strong belief that something will happen a certain way, based on what we learned growing up or were exposed to within our “tribe.” They can be positive or negative.
Having expectations is a natural part of being human, but when it starts dictating how we behave toward others, it can become a problem. When we are prone to disappointment because of unmet expectations, this can make us feel hurt and defeated.
Hereditary ATTR amyloidosis can take hold of the sufferer and progressively undermine their ability to live normally. This disease diminishes quality of life and does not hold back from transforming the person’s character.
For example, my husband has become a different person from who he was in the years before the disease took charge. Then again, perhaps the disease just revealed what had always been there but never surfaced. I now see so much resilience and faith in Aubrey, despite the hardships he faces. But I also see apprehension and wariness setting in with every mishap he encounters.
So, when it comes to my expectations, I have decided that it is safer not to have any that involve my husband. This may sound awful, but by not having any notions or assumptions, I am able to see him for who he is. By letting go of my unmet needs, I am instead capturing new encounters with him and loving him unconditionally.
In the face of life’s constant fluctuation, we must become flexible and fluid in our existence. We shouldn’t compare ourselves with those around us because we march to a totally different drumbeat than the rest. Creating our own rhythm is necessary and can be very special.
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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