The Words From My Doctor That Transformed My Life With Chronic Illness

A friend once asked me to share how “personal courage” shaped my medical outcomes, wanting to know more about how I do it. How is it that I walk when I shouldn’t be able to? How is it that I see when I nearly lost my sight? How is it that I seem to shape my outcomes to be as positive as possible? It’s truly not courage, not for me. It is survival. Every day I spend just literally staying alive. When you’re told you are sick and will never get better, it changes your world in unexpected ways. There was a time when I lived in a very dark place in my head. A lot of therapy and personal work has helped me grow into a person who is happy in my own company, and creative new paths have grown me into the artist I am today.

My cancer surgeries had just destroyed me; physically and mentally I was so very unwell. I had lost my career, my home, my family, my mind, and worst of all, I was losing my will to live. I was told my illness was an “excuse,” and had little to no support.

It has only been within the last year that we got the biopsy results and finally a solid diagnosis, and it’s not pretty. Some previously missing pieces to the puzzle have revealed very rare conditions which we now know for certain that I have, genetics likely the reason.

Back then, I told myself that I was a burden. I had conversations with myself that ended in “putting my affairs in order.” I poisoned my world with my own inner dialogue. Anything that may happen outside of that, I would twist into some ugliness that I imagined. There was a time I felt beyond hopeless, and more like I was just waiting for the end. I lived in a bitter state and angry at the world, and at myself. The dark moments were really hard to climb out of, as I was focused on what I couldn’t do.

I sat in a medical exam room in tears, scared to lose the provider who had held my fragile world together. He was moving on to a big promotion. I had to put trust in a new provider, but I needed closure with my current one. I’m pretty sure we would have buried me so many times over, if not for this doctor who saved me, and I had to let go. At this point, we had made headway into trying to figure out what was wrong with me. I had clawed my way out of a bed that I laid in for two years, with a wheelchair and walker emerging with a cane, and managing to hang on to life. He said in that brief moment, “Do not let this define you.”

You might think that one sentence is too simple to save a life, but it is so heavily loaded, it changed me. In those words, I found the start of a rebirth of my inner strength. I found the desire that I had in my career to do whatever I could to take care of someone in the back of an ambulance, and use it to help myself. That rush of adrenaline actually happened in an effort to save a life once more, but this time it was my own. A desire to beat the odds. To truly not let illness define me, not only in other people’s eyes but more importantly, my own. I read an article once that talks about how we use language, how saying “my cancer” isn’t so healthy, and to instead try “the cancer,” or whatever it is called for you. You may have it but you are not IT.

I think about that sentence, the intent of his expression as he said it as if he was daring me to fight for a different life. Metaphorically, I imagine a warm pale pink light emanating from the open doorway. The kind of brightness that is so soft your eyes feel relaxed, comforted, and drawn to it.

Thinking back now, I can recall everything about that moment. How the room looked and the familiar aromas of a medical exam room. The sounds of people in the halls. The irony of how many thousands of hours I spent on the other side of that bed, and now small fiber neuropathy and CRPS had medicalized me. It was at the time a harsh reminder of all I had lost and a new challenge.

Somehow in all of that, I found a positive goal to strive for. The idea of surviving to see a ripe old age, and to do so standing up as long as I could, became appealing. At the time, I was finally learning to want to live for myself. to see myself as the individual, and not the makeup of the many jobs I had held and had to let go. I needed to know that losing my career would not define me as a “has been,” or perhaps a societal burden. I needed to find ways to be independent as much as possible and to refuse to accept outcomes as if they were written in stone. There was no reason why I couldn’t beat the odds. I just had to feel worthy of it. I had to find a path to love and belonging that would feed my desire to live with love and belonging.

According to my biopsy and the provider who was waving it as she approached me, “This is validation.” She seemed as shocked as I was to find out that I shouldn’t be able to walk. She said, “I don’t know how you are walking, never mind treading water.” I should, by all accounts, be unable to get out of bed.

“Don’t let it define you.” I roll that mantra around in my head in times that I feel weak, or just too worn out to keep going. I started having conversations with myself, and now my therapist assures me that I have not lost it completely. I repeat to myself, “don’t let it define you.” I imagine reaching down into the pit of me to refuse to allow “it” to control me. To stop me from living and laughing. I am of my own design and I embrace my errors as much as my successes. That which defines me can only be of me, not of the world.

I have, however, developed an ability to converse in my own mind to handle whatever challenge is before me. I have those conversations on purpose. I refuse to allow something that might be a bit hard to be out of reach. It means talking to myself and using rational judgment to define how my day, or that single moment, will be. I don’t have tomorrow until it is tomorrow. I only have this moment until another moment comes along. Someday that will stop, so live with purpose.

It’s a slow dance in my head, touching on what parts of me work, kind of work, or maybe are on strike at that moment. In times when I can’t see well, I bake homemade bread. When my legs just can’t hold me, I write. When the pain is too great, there is my love affair with my easel and the joy of wearing acrylic paint, a habit that I am only a few years into and have fallen madly in love with. Finding nuggets outside myself has saved me from my own demise.

The most effective ones are when I give myself permission. Permission to change my mind, be wrong, or even receive something, like help. I can say to myself, “No, don’t listen to that music; it will make you sad.” “Boy, you messed that up. How can you fix it, rather than hiding from it?” In my youth, I learned to hide, but today I can remind myself of just how much of a badass I really am. I allow myself to receive the words of my therapist,  and how amazing it is to come this far from such a dark and twisted childhood, using that energy now to fuel success in life now. Outcomes no one even gave me a chance at succeeding in, met and smashed right through. creating a path thought to be medically impossible to reach.

Sometimes the conversations become fun. I will goof with myself. Catch a foolish thought and even poke fun at myself while seriously realizing how twisted that thought was, how that thought didn’t belong to me, but those who beat it into me.

Now I say yes to outings or day trips. Grasping onto spur-of-the-moment opportunities and enjoying them. Pausing in my mind before the trained “no” escapes my lips, turning that into a yes. Who says you can’t make movies come true, and live in them? I tell myself to get up and move, even if it is stepping in place. I catch myself and hold my own feet to the fire to get into the pool weekly or have lunch out with a friend. If it’s a hard day, I challenge myself to allow myself to rest, to allow a day of healing, and not see it in a negative way. I had times when I told myself that I was being “lazy” and I wasn’t, but I had to learn how to not abuse myself with those same old damning statements.

I challenge myself in those conversations in my head to find a better outcome. It’s not a habit yet, but I work on trying to make something good happen in whatever environment I am in. Not allowing depression to take hold of the “wish I could” moments. I can flip it and find joy in what I can do. Laughing at myself and not taking life too seriously, enjoying what any given moment might bring. I can use the moments of medically induced amnesia to experience “firsts” more than once. I share that to show you how my sense of humor gives me a great way to handle a terrible side effect of treatments.

Damn, I wish I was perfect and could tell you this is the best fix, but that would be a total lie. What it becomes is an acceptance, a real acceptance that I am quite ill. That said, I have a desire to do my best, for real. Not just saying it but living it. Talking to myself, even out loud, “Chill Jenny, you got this.” Really it comes down to only two choices: Learn to live with it or be destroyed by what my “it” is. Having spent over two years in the latter part, life now can feel unreal to me at times, as if I am living in some movie. To see that goals still exist. What I have come to realize is that it is very real. This is life without abuse, without allowing what is wrong with me to define me. This is life without self-destructive thoughts. I have a life that is still worthwhile and I am worthy of it.

“Never let (your) it define you.” –M.D.