The things I miss about life before caregiving

I miss deliberately and intentionally placing my phone on silent mode.

I miss the luxury of my phone battery dying, of my being out of reach, and of not being someone’s first and last emergency contact.

I miss not being able to differentiate between “neuropathy” and “neutropenia,” and I really miss not needing to.

I miss not having a column where I document my life as a caregiver.

I miss not knowing what myeloma is, and not having to update myself on recent clinical trials.

I miss not having to struggle with feelings of guilt every now and then.

I miss not having to do so much administrative work while simultaneously caring for someone in need.

I miss not feeling so angry at the slightest provocation.

I miss not feeling stressed, anxious, and burnt out.

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September 23, 2025 by Marisa Wexler, MS

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The luxury of the unremarkable

Grief doesn’t always reveal itself just for the big things. Often, the smallest losses make the loudest echoes. To illustrate this better, consider how enjoyable it was for me to have:

• Ignorance. I miss the bliss of a headache being a mere headache, and not a potential symptom of something else.
• Spontaneity. I miss not being able to say “yes” to a party without having to check the calendar for the next myeloma treatment.
• Silence. I miss the absence of a bottle of pills rattling in the next room.

The guilt of missing it

When I force myself to admit these things loudly, it feels as if it’s a betrayal. However, I feel that remaining silent is a heavier weight to bear alone.

Before now, I used to feel ashamed and guilty because I’d kept all of this nostalgia buried deep inside me. I kept wrestling with myself, struggling with anger, and asking no one in particular, “How can I long for my former life when my mum is fighting to save hers?”

Then, one day, another caregiver told me, “It’s not your past that you are mourning. What you are really mourning is the future that all this was supposed to lead into.” That was the day that everything changed for me. My mindset shifted completely.

A permission slip for nostalgia

If you are harboring a similar guilt, the following is what I am learning to tell myself. You can also borrow and apply it to your life as a caregiver.

• Name it to tame it. Say the silent part out loud, not just in your thoughts. For instance: “I miss my old job.” “I miss being someone’s son, not their nurse.”
• Gratitude and grief can coexist. You can be thankful for this time and also unhappy about its cost.
• Your love is not measured by your suffering. If you miss having your sleep, it doesn’t mean that you love your patient less.

The mantra to remember

Grieving the person you used to be does not mean you are disloyal. It means you are honest. And honesty is the foundation of real resilience.

One small thing to try

Anytime this week, take a little time, like five minutes or more, to deliberately miss one particular thing — really miss it. Then, write it down on a piece of paper, light a candle, and burn the paper. Or you can just say out loud: “I let this go.”

You don’t have to live in the past, but you’re certainly allowed to visit it.

Note: Rare Cancer News 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 Rare Cancer News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to rare cancer.