I watched familiar faces filter into the room where I stood stunned, not expecting the birthday event that was unfolding before me. I turn 50 tomorrow, and some close friends went to the trouble of organizing a celebration for me. I was thankful for the moment, and I felt the love in the room.
As I greeted friends and eased into the evening (I live in New Zealand, where the coronavirus is under control), I began to struggle with the attention directed toward me. I caught my husband’s eye, and he could see the quiet discontent on my face. He knows I dislike birthday surprises, and it was evident that he had partaken in this birthday mischief.
On one hand, I know he wanted to do something extra special for me on the auspicious occasion of my turning half a century. On the other, I would have thoroughly enjoyed a quiet dinner with him. I am indeed maturing into a misanthropic, antisocial 50-year-old, and I can’t help but blame amyloidosis for this.
Before my husband, Aubrey, was diagnosed with familial amyloidosis in 2013, we entertained a great deal. We loved having friends over for homemade meals I would prepare, because I enjoy cooking. Through the years, however, his worsening health made having groups of people at our home difficult and taxing for both of us.
The way that patients suffering from the effects of hereditary transthyretin amyloidosis physically feel can change from moment to moment. One minute, sufferers can feel good, while the next, they must run to the bathroom due to cramps or chronic diarrhea. This is immensely debilitating, especially in a social setting or when traveling. Added to this, sufferers must also contend with peripheral neuropathy pain.
These health issues cause strain and stress to an already weak body. Hence, anytime we are in a social setting, I try to keep a close watch on Aubrey to ensure he isn’t struggling to keep up with those around him. It doesn’t take much to knock the wind out of him and for him to become unwell.
For carers, changes in the well-being of our loved ones directly affect us. As Sir Isaac Newton famously noted, “To every action there is always opposed an equal reaction.” Any activity my husband decides to do will have a flow-on effect on me. His up is my up, but his down can also become my down. I must pick up the baton when he drops it, even though I never agreed to be in the race.
It is unfair, because both sufferers and carers must constantly tailor life to be in agreement with the fabric of the disease. The only way carers have any hope of staying the course is to look beyond what is apparent and focus on the important.
I am thankful that my husband is still able to weave into my life his words, actions, and deeds. He may be unable to walk places with me, but he can still direct my path. He may be unable to lift the weight off my shoulders, but he can still hold my hand when I need him to. He may be unable to remove the pain of what I have lost, but he can still tell me that he loves me. This is good enough.
“There were people who went to sleep last night, poor and rich and white and black, but they will never wake again. And those dead folks would give anything at all for just five minutes of this weather or ten minutes of ploughing. So you watch yourself about complaining. What you’re supposed to do when you don’t like a thing is change it. If you can’t change it, change the way you think about it.” ― Maya Angelou
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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