Welcome to My World

Listening to people's fears about COVID-19 feels oddly familiar. It feels unlike my favorite coffee mug or cozy sweater. Yet it is as common to me as those items. It took me a while to draw the line. To understand why my bells weren't going off and I wasn't full of dread. Please don't misunderstand, I am well aware of COVID-19 and the dangers it brings.

I was driving down the road thinking about how people around me were reacting, or not reacting. As I rolled up to the stop sign, it hit me. This phrase came crashing into my head - "Welcome to my world".

As cancer survivors, we are often too well aware of what it feels like to navigate impending doom. We know what it's like to do all you can, yet still, feel like you are succumbing to an invisible foe.

Is it possible then that now some of my tribe who have never faced a health challenge know how I feel?

My diagnosis completely changed the trajectory of our family's life. We lived on the Rosebud Indian Reservation. We were 3.5 hours from major medical centers. Our doctor suggested we move closer to good medical care, as my cancer was rare. For us, that sent us across the country, back to North Carolina where we were from. Only we didn't have a home there anymore. People took us in and allowed us, our three children and a dog to live with them until we could finish treatment. We lived in North Carolina for nine years after that before coming back to South Dakota. COVID-19 has changed many of our world's, as we have known them. Businesses have closed, jobs are furloughed, unemployment claims are the new normal for some.

Fear is encompassing many people. Will I get it, will it kill me, will I lose someone I know? Many, many survivors struggle with this relating to cancer often.

After I was first diagnosed, one of our daughters who was twelve had a knot on her leg. I remember looking at her x-rays, reading the report. A suspicious lesion could be this, could be that. I can still feel that feeling of dread in the pit of my stomach.

Someone I knew had the "NOT" wisdom to say, maybe God is using your cancer to prepare you for what she will go through. NEVER say that to anyone.

I still struggle to keep my mind of all kinds of bumps and bruises being the worst thing ever. I know this is because once you have gotten bad news from the doctor, you know it can, and you know it does happen.

Many people told me, even the doctor at first, you don't have cancer you will be fine. But I did have cancer. I am fine now, but I wasn't then. And even now, it often isn't easy. I have long term side effects and a lot of uncertainty.

Much like watching the news today. We are inundated with statistics, numbers and conflicting information. Rising numbers, wear a mask, don't wear a mask. Use hand sanitizer, don't use hand sanitizer, just wash with soap. Don't go out, do go out. It seems never ending. For some of us, this conflicting data, to do right or wrong, exemplifies our cancer stories.

I wish some of my tribe didn't have to experience this, but now they are.

Yet at the same time, if I am brutally honest, I guess there may be a small part of me that is a little glad.

A small part, I dare say, that hopes they will draw the lines. The lines between living in a pandemic and lifetime of cancer survivorship. The uncertainty of the unknown. The influx of conflicting scientific information. The fear of is this a symptom of coming devastation or just a bump that will go away. The certainty of life never being normal again. Being told you shouldn't feel the way you do because after all, "You survived, didn't you?"

I want my tribe and others to see this parallel because of the possible outcome. I have worked hard to find silver linings inside of the storms of life. I choose to try to focus on the positives in a bad situation. It's not easy, but the more I do it the easier it becomes.

Maybe a positive outcome of this pandemic uncertainty might be understanding. A different and deeper understanding of those around us who live with health concerns. Fear and anxiety can often be palpable when it comes to our health. This pandemic has brought that closer to some, who have never had to experience it first hand. Maybe it can bring a change for the better. A movement of listening and learning from those around them. Less criticalness and more love.

Many people think that their loved one, neighbor or co-worker should be fine. Fine even though their lives were and are forever changed by having had cancer. Often people don't see the chronic pain so they assume it's not there. Even worse, they think someone is "Playing the Cancer Card".

I hope I am not alone in my thought process here. But if I am, then I know it's okay. It's okay because right or wrong, my perception is based on my experiences. Until we have walked in someone else's shoes, we don't know what it is truly like to be in them. But as we share our deepest thoughts sometimes we find we are in good company.