If It Is Not Me, Who Is It?

I guess I had a good run being me. At times now, I’m not so sure where that person went. Here’s why.

In a few months, it’ll be six years since I was diagnosed with chronic myeloid leukemia (CML). Honestly, most of the time it feels like 600 years, forever. Yet somehow when I look in the mirror and say, “that’s not me,” I’m still searching for the other me, the “BC” one, the before cancer Susan.

The other me

The other me woke up early, for a few years went for a two-mile walk before work, and was employed in an actual office. Not only that, but she was extremely organized, zipping through to-do lists, meeting deadlines and heck, having some fun on weekends, and during free time.

Housework, appointments, errands—those got done too, most of the time or were, at least, handled with ease and on a regular basis.

By no means am I saying life was perfect, because it was far from it. Back then, being a full-time caregiver and working full-time took its toll on my stress levels and psyche. But nothing like now, AD (after diagnosis).

Life after my diagnosis

There are no lists. I’ll either lose them, ignore them, or think they cause me unnecessary stress and unrealistic expectations.

I wake up when I wake up. And sometimes, well, a lot of times lately, I give in to my fatigue in the late afternoon and have to stop what I’m doing to nap. I’m still working full-time but it is from home as a freelancer. Telecommuting has been a way of life for me for years.

My walking days are a memory. I use a cane now, I’ve gained 100 pounds, have lymphedema, other additional health problems, and get out of breath more easily. My hair has thinned out and changed color. I was getting back on a treadmill (an aquatic treadmill) during physical therapy but that came to a halt recently. I miss it.

Weekends were and still are a blur. I try to get things done but more often than not I’m working to make up for what I didn’t finish during the week. Outings with friends are few and far between.

"I want to be the BC Susan, even though it’s not possible"

People treat me differently AD. Some think I’m faking it if I’m not up to large social situations or going out. Some make themselves scarce. Others feel weird and worry I’ll talk about cancer and make them uncomfortable.

Many don’t understand that a lot of times I’d rather chit chat about their lives, movies or books or any other thing happening in the world. You know, like normal people. They don’t get that I want to be the BC Susan, even though it’s not possible.

So even though I’m less energetic, more emotional, disorganized, very forgetful, and look at things day by day instead of long-term, I shouldn’t discount myself and others shouldn’t either. That’s what I’ve learned. I know I shouldn’t look in the mirror over the sink and say, “that’s not me.” But sometimes I do.

Finding my new voice

Mercifully, over the past year, I feel like I’m finding my voice, my new voice, and believe I have something to say. I’ve been given this platform to share my thoughts as they scramble around in my brain. And I’ve discovered other people sometimes feel like I do in this community.

Are the BC and AD Susans the same person? I don’t think so entirely. When someone tells you that you have chronic leukemia, there is no cure or remission and that you have to swallow toxic poison every day, that’s a bitter pill to swallow. (See what I did there?)

You can’t ignore the ton of side effects (some are bizarre) that crop up. You can’t really ignore the reality of regular blood testing and sitting on the edge of your seat waiting for results. You get better or worse for no apparent reason. I know enough now not to get complacent or too happy when I’m “undetectable,” because the next time I may not be.

I hate the expression, “the new normal.” There’s nothing normal about living with CML. Until you’ve been there, you have no idea what it’s about.

So who is in the mirror? And can you accept her?