advice · death · disability · Fear · health · self care

8 Lessons for Living with Uncertainty From a Perennially Vulnerable Adult

I get it. You’re facing down the barrel of your mortality right now, and the mortalities of your parents, grandparents, children and other people you care for. It sucks. Random, horrible things can happen and change your life forever. Or end it. But this isn’t news. Life can change in an instant, and it can be completely out of your control, and that has always been true. The only difference is now you are being forced to face the reality you could comfortably deny as long as your life was banally humming along. Welcome to my world.

At the age of 24 I went from a healthy, active person to someone with a disabling, life-threatening immune condition. Random chance, totally bad luck, threw me a curve ball that kept me in the hospital for a month, left me missing a big chunk of one lung and unable to walk up a flight of stairs without assistance. I spent 8 months on high-dose Prednisone and three years after that on weekly chemotherapy drugs to keep my body from attacking itself and killing me. I hate stories about how some horrible cancer diagnosis “was the best thing that ever happened to her” or how some terrifying ordeal “helped him have gratitude for the important things in life.” I don’t think my immune conditions (I’ve developed more over the years) have made me a wiser, better person. But I have learned from the experience, and I’d like to offer you these potentially comforting observations I’ve noted along the way.

The hardest part is the not knowing. It took about half a year before I had a diagnosis. Even with a diagnosis, the prognosis was up in the air. At one point I was told that I had only a 50% chance of living past 5 years. Later on, I was told they really didn’t know, there was just too little data to base any predictions upon. I believe that knowing is always easier than not knowing. How do you live your life day to day when you can’t plan for the future? You will make very different decisions when you know that something is temporary than when it may be indefinite. Coming to a place of accepting that you don’t know, living in the moment while planning for the future is the best balance I can suggest. For me, I have had to learn over the years to consider my barriers and limitations as flexible unknowns–I have to push against the boundaries to test them–is this a real limitation or simply something I feared would limit me? It’s a constantly moving target, and I’ve learned to be flexible as situations have changed.

Your life is at increased risk. You can get used to it. In fact, if you are going to get on with your life, you have to get used to it. We can only hit the pause button for so long, and then we need to get back into the swing of things. You will need groceries, a paycheck, a new pack of underwear. I live my life every day with the awareness that my condition can come back. Every time I have a cough, I have to consider, “Does this feel more serious than just a cold? Am I being irresponsible if I wait it out before going to the doctor?” Every little aberration in how my body moves and feels carries a heightened awareness to it, and yet, I don’t go around constantly anxious about my future. I notice it, I pay attention, and then I move on. Most of the answers to my questions come with time and patience. If you can avoid insisting on instant reassurance, you will find that you fare better.

Most people facing their own mortality don’t have the benefit of a social circle that understands. Don’t take it for granted. When I got sick, I was alone. Only about 6000 people in the entire United States have been diagnosed with the condition I’m facing. Not to mention, my peers at the time of 20-somethings could not even kind of relate to my ordeal. Lucky for you, pretty much everyone around you is dealing with some version of the same fear right now. You can support each other because you understand your shared uncertainties. On the other hand, you are at higher risk than I was for “social contagion.” The downside of collective awareness is that your anxieties can compound upon each other, fear can beget more fear, and as social animals, we are built to mirror each other’s emotions. Compassion and empathy are important, but I encourage you to temper them with calm and mindful acts of support.

It isn’t helpful to let the current situation dominate your thoughts. Practice the discipline of reframing your thinking, and you will experience less stress. This would be an excellent time to limit your exposure to social media, too. You don’t need other people’s fear speaking voices in your head. For those of you who like that woo-woo shit, feel free to increase your focus on your “gratitude practice” right now. Me, I’m going to limit my exposure to the news and increase work on some neglected projects around the house. This seems like an excellent time to begin planning my basement remodel. This sort of intentional shift of focus gives me something productive to put my energies towards rather than stirring up fears of the unknown.

On a related note, don’t let fear be your guiding principal. Consider making important decisions when your mind is feeling more calm–like right after a good meal with some satisfying, slow-digesting carbohydrates in it. Your fear-based decision might be making people like me less safe, if it means you switch to antibacterial soap, for example, and increase the likelihood of superbugs. The panic that has led to emptying store shelves isn’t doing the community any good, either. Consider finding other ways to take care of yourself than giving in to the hedonic needs of your fear.

If someone near you gets sick, when it is safe to do so, literally embrace them and return them back into your life. I developed mysterious lung symptoms and a persistent, low grade fever just about the same time SARS was in all the news. When I was released from the hospital, we didn’t know why I had nearly died, but we did know it wasn’t an infectious process. Despite this, I was treated like a pariah. No one would hug me, hold my hand, pat my shoulder. People would literally take a step back when I told them what had happened to me. It was like they were afraid that my near-death would rub off on them. It was exceptionally isolating in an experience that already left me alone in so many ways. So I ask that you please, please, welcome back the folks who become sick. Love and support them, touch their hands, kiss them on the cheek, and help to reintegrate them back into your world.

You don’t know what’s going to get you. That’s always been true, you’re just now having to face it. I used to feel like I knew better than most people what was likely to kill me. However, even when my condition was quite severe, I still could get hit by the proverbial bus. That hasn’t changed, and it’s true for all of us. None of us know what is going to get us in the end. We can’t live our lives dancing around the edges, hoping nothing will ever take us down. We have to live the best life we can with the life we’ve been given. Uncertainty will always be a part of the equation. Part of making the best of it is keeping that in mind and keeping it in perspective. That’s how I live my life every day, and I encourage you to do the same.

Photo description: Two wrinkled hands, one bare and one with a black and white checkered sleeve, holding each other over a leather background.

Marjorie Hundtoft is a middle school science and health teacher. She can be found picking up heavy things and putting them down again, and wondering when the gym will be closed, in Portland, Oregon.

2 thoughts on “8 Lessons for Living with Uncertainty From a Perennially Vulnerable Adult

  1. Thank you very much for this post. Lots to consider.

    And “For those of you who like that woo-woo shit…” I HATE that woo-woo shit! I’m happy I’m not the only one who does.

    Liked by 1 person

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