I feel the coolness of the glass against my forehead. The shower is pelting warmth against my skin, but the water doesn’t feel very soothing today.
I am tense as I block out thoughts of banging my head against the glass shower door. I know this sounds absurd, but today I’m filled with frustration and unable to control the anger that grows inside me. I want to grab amyloidosis by the neck and wring it.
My husband, Aubrey, 56, has familial amyloidosis, a disease that seems like a demon we can’t escape from. Its tendrils of darkness envelop him, and today, just for this moment, I am tempted to give in. I am tired and sad.
This illness has claimed so much of Aubrey that every day, I see less and less of the man I once married. So much has changed since his 2013 diagnosis of hereditary transthyretin amyloidosis (hATTR). Although the person I fell in love with is still there, sometimes he is not. It’s like dusk, when we can see the outline of something familiar while the other details are hidden in the shadows.
I feel awful writing this, but it is my current reality. Someone once said that we can’t change what we refuse to confront. I can’t change what is happening to my husband, but I will confront my emotions and lay them out for you to read.
I miss his strong arms holding me. I miss the deep-hearted laughter we used to share. I miss hearing him speak of new experiences during his work travels. I miss the unwavering confidence in his voice, reassuring me that everything in life will turn out fine. I yearn for, and perhaps mourn, what we have both lost.
On days like today, I can feel myself slipping back into a dark pit and losing my grip. I am too mentally exhausted to drive away these sullen thoughts. So, I allow myself to ride them out, like the rolling waves of the ocean that I have surfed.
C.S. Lewis wrote in “A Grief Observed” that, “We were promised sufferings. They were part of the program. We were even told, ‘Blessed are they that mourn,’ and I accept it. I’ve got nothing that I hadn’t bargained for. Of course it is different when the thing happens to oneself, not to others, and in reality, not imagination.”
If you are a carer reading this and fairly new to this journey, I want to let you know that it is OK to feel scared and unsteady. Your emotions are valid, and you are not weak-minded when you doubt your ability to be strong for someone else. Confront what you are experiencing and talk to someone who understands what you are going through. Do not suffer in silence, because the darkness will eat you up and drag everyone you care about down with it.
If you are a carer like me who has been doing this gig for a while, I hope that by openly exposing my soul, you will feel encouraged. Perhaps you can feel that tightly knotted ball of pain at the pit of your heart, placed there by a reality you didn’t bargain for. Let’s ease it out slowly.
It’s OK to be true to our feelings, because the first step to healing is awareness. We all have our strengths and weaknesses as human beings. God gave us emotions, but we can choose how we respond to them. If we think of them as tools, what we feel can be used to serve a purpose.
As painful as it is, I cannot imagine life without being able to feel. We can be moved to a better place if we decide to be. The choice is ours.
Tomorrow the sun will rise, and the shadows will be gone.
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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