The caregiver’s inevitable process of unlearning

I am learning to unlearn certain things.

Throughout my life, I was taught that if you work hard, you will succeed. I was also taught that you’ll be safe as long as you are good and follow the rules. Another one is that love is a quiet and gentle harbor.

But myeloma has completely rewritten all of these.

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Unlearning certainty

As a caregiver to my mum, who has myeloma, the first thing I had to forgo was the future.

I had to unlearn the comfort I once found in a five-year plan, and the security I felt in having a calendar jam-packed with vacations and birthdays. I had to let go of my grip on the illusion that tomorrow holds promise for everyone, especially for me.

These days, the plans I make are in days, or at most weeks. They’re also in blood counts, in the tiny times and spaces that exist between treatments, diagnosis, and clinical trials.

The future is no longer some destination that exists on a map. It just consists of the next steps that my mum and I take on a ground that tends to be unsteady and unpredictable.

Unlearning strength

I had to unlearn the meaning of strength and being strong.

Before my mum’s diagnosis, I used to think that in order to display my strength, my eyes must always be dry and my back straight. I used to believe that showing I was strong meant I had to display stoicism. Strength meant that I had to bear the unbearable weights and repetitive routines of caregiving without making a sound or complaining.

Now, I know better. I now understand that to demonstrate my strength, I must do the opposite of what my previous inclinations were. These days, strength is found in the tears I allow to freely fall when I am alone in the hospital bathroom, worn out and confused. It is the sound of my voice cracking when I am confiding in a friend, “I don’t think I can do this.” It is the courage not to be ashamed of showing how fragile I am in most situations.

Unlearning control

I had to unlearn the belief that I am in control.

I used to think that if I did enough research, organization, and advocacy, I could command, control, and determine the outcome. I felt so confident that I could fix this.

I am now learning, slowly and painfully, that myeloma is a storm that cannot be predicted or controlled. I also now understand that my role in this storm isn’t to offer directions, but rather to hold my mum’s hand and guide her through it. My job is to offer her comfort, not to cure her of the disease. Perhaps this unlearning regarding how much I cannot control is the hardest of all.

The mantra

Nobody can control the waves of a turbulent sea. However, everyone can stop trying to command the sea.

A new kind of wisdom

I haven’t lost anything by undergoing this unlearning. Rather, it is a necessary education, albeit a brutal one.

What I have learned so far is that a plan is not as powerful as presence. I also now know that valor is not as authentic as vulnerability. More importantly, I now understand that providing shelter from the storm is not the most profound display of love. That is my unwavering commitment to standing together through the rain.

I am now unlearning how I had imagined life would be, and learning how to truly live it.

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