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I want you to feel heartbroken when you are done with this piece. No, actually I want you to feel devastated and angry. And I do not know why.
Have you ever felt that you are trapped in solitary confinement under an annoyingly-low ceiling painted with cloudy figures of people? Have you ever felt that the sky is made of cement, and so close to you that you cannot bear its weight on your heart?
Have you ever felt that breathing is hard and painful? That you needed to run away and leave everything behind? Have you ever lost your dreams? Felt loneliness was eternal?
Well, cancer makes you feel all of the above.
But don’t get me wrong – I am not the cancer patient. I am the caregiver.
I am the one everybody asks, in a sad voice: “How is your husband [the cancer patient] doing? Is he feeling better?”
They hardly ever ask how I am doing. And that is why I had so much trouble writing this piece. It seems that nobody believes that it is my story, too – not even me.
The feeling of guilt is unbearable. Is this my story to write? Do I have any right to write about my husband’s story? Do I, as a caregiver, have any story to tell? If I do, should I tell his story or mine?
But then, why do I feel so guilty writing about myself, my pain, my story? Why do I feel guilty?
When my husband was diagnosed with cancer, everyone from doctors to colleagues to friends made it clear to me that this was his journey, his story. It made sense to me – for a while.
But eventually, I realized something was wrong with that picture, and with the realization came a solitary and crushing guilt. It slowly, painfully, inexorably eats me up.
I continually question my actions and attitudes: Am I being selfish? Am I a bad wife and an awful caregiver? Am I betraying him by being selfish? Does it mean I will leave him?
Believe me, you do not want me to continue this line of thought – chances are I will end up in a really dark place. For the sake of our readers, you, Voices in my Head, please stop now!
In any case, the problem became clear when I first had to deal with my husband’s seizures. The doctors, pretending I was not there, asked my husband what the seizures usually “look like.”
I stared at the doctors, hoping they would feel uncomfortable and notice me. I concentrated all my energy in my eyes, trying to get the message across: How on earth would he know what his seizures look like? I am the one who watches him during the seizures. Yet, I did not dare speak. After all, it was his story.
I had to administer all aspects of my husband’s care, since he was in denial and shock and would not do anything at all.
It was a great deal of responsibility. You have to be really careful about the decisions you make for the patient: They might be wrong, and you will be blamed.
At best, you need to explain yourself all the time.
One time I took my husband to the emergency department for help with a seizure. Later, I got a note from his oncologist telling me I shouldn’t have – that the seizure was not serious enough to warrant an ER visit.
He told me that my behaviour in taking him there only served to intensify our anxiety. We needed, he said, to adjust with the situation as soon as possible, and “move on.”
Let me explain something. We were on a trip at the time, and during the seizure my husband bit his tongue and there was blood all over the place.
Damn, I did it again. I’m explaining myself, again.
The feeling of guilt grew stronger when I insisted my husband tell his family about the cancer. He did not want, understandably, to upset them. But why should I be the only one to be upset?
Oh my God, do I want them to suffer? Am I being selfish again?
I felt even guiltier when I thought to myself that he was being mean to me, shouting out whatever went through his mind. Can I tell him how I feel? Am I again being selfish? I mean, he is a cancer patient; he has a right to be angry at the world – and to shout.
I felt guilty when I experienced all the side effects of the chemo on his first day of chemo. The poor thing ended up taking care of me – holding my hair back while I was vomiting and crying at the same time.
Ah, such an awful caregiver I am!
And then I felt guilty when I made good friends through patient-advocacy groups, and was helped to transform my life by pursuing a graduate position in health policy. After all: It’s. His. Story.
I guess the point I am trying to make is that I, as a caregiver, have had a tough time dealing with the situation.
My fight started the very moment my husband’s fight began. And everybody, from myself, to my husband, to the doctors, to the system and to you, dear reader, needs to understand that it is OUR story.
So, next time you talk to a caregiver, do me a favour and ask her or him: “How are you doing?”
Sara Shearkhani lives in Toronto.Report Typo/Error