“Who are You?” said the Caterpillar.
“I-I hardly know, Sir, just at present- at least I know who I was when I got up this morning, but I think I must have been changed several times since then.”
~Lewis Carroll, Alice in Wonderland
I can really relate to this sentiment, especially after the diagnosis of cancer rocked my world. I am not always sure who I am at any given moment. Some moments I am a mom who is still very much involved in the lives of her kids. Other moments I am a wife who enjoys being out and about with her husband. Then there are those moments where I’m flat out on the couch from pain and fatigue wondering exactly how I became this person. Being chronically ill is a crazy life, one day is never the same as the next and each brings with it a mystery all its own.
When illness rears its ugly head again, those defining characteristics that make us who we are become blurred and the symptoms of the illness become the marker defining the question.
Much like Alice, when illness turns identity upside down, it becomes almost impossible to answer the Caterpillar’s question. Who we might be one moment is not who we are the next. As illness takes its run downhill, we may identify ourselves as we once where before we took sick. Suddenly, as if out of the blue, we are able to do all the things we did before illness struck, it is easy to forget about being sick and focus in on the positives of life. When people ask that question, it is easy to answer. Life is fun again and it takes on a meaning that it did not possess when illness had one firmly in its grasp. Then, when illness rears its ugly head again, those defining characteristics that make us who we are become blurred and the symptoms of the illness become the marker defining the question. After awhile, one begins to feel as mad as the Hatter or as exhausted as the Dormouse.
This problem has pretty much defined the last few months of my life. After the debulking surgery, it became apparent that I did not need to have such a high dose of lanreotide. I was experiencing horrible side effects, constantly exhausted, and extremely stressed out about the alarming rate in which my hair was falling out. Being unknowingly over medicated reduced my life to pushing through exhaustion, high levels of pain, and just a general feeling of being unwell. If the Caterpillar had asked me who I was at that particular point, I think I would have had to answer, like Alice, that the confusion had left me feeling that:
“I’m afraid I ca’n’t put it more clearly…for I ca’n’t understand it myself, to begin with; being so many different sizes in a day is very confusing” (Carroll 55).
Everything that I used to use to define myself had been washed away with each injection, leaving me feeling like a shell of who I have always thought myself to be. I used to be a go-getter, a hard worker, and someone who could never sit still for a moment. With the high levels of lanreotide coursing through my body, I felt like a stranger to myself as I had been reduced to flopping around the house like a rag doll, unable to perform even the most basic chores.
For those who have never experienced a long-term, chronic illness and the effects of the medication, it becomes impossible to meet the Caterpillar’s demands to explain. The whole thing just fails to sound rational. I think Alice does her best when she tries to find a common ground for the Caterpillar so he could both understand and relate to her predicament:
“Well, perhaps you haven’t found it so yet…but when you have to turn into a chrysalis- you will someday, you know- and then after that into a butterfly, I should think you’ll feel it a little queer, wo’n’t you” (Carroll 55)?
How is it possible to explain to someone how you can be one person one day and a totally different person the next? Life with chronic illness as a whole, from an outside perspective, takes on an irrational appearance as illness allows for its ups and downs. One day may find me out and about, shopping, running errands, cleaning the house like a mad woman, and cooking like nobodies business. The next day finds me unable to even take a shower due to intense exhaustion. It is truly unexplainable.
Personally, I think my favorite exchange between the Caterpillar and Alice is the following:
Caterpillar: “So you think you’re changed, do you?”
Alice: “I’m afraid I am Sir…I ca’n’t remember things as I used- and I don’t keep the same size for ten minutes together” (Carroll 57).
To me this has been the hallmark of being chronically ill. I can’t remember anything! The brain fog is a new friend that never, ever, under any circumstances leaves my side. It is there with me when I’m trying to talk to friends and family. It is there when I’m trying to remember exactly why I am in a particular room and what on earth it was I had meant to accomplish while there. My sentences are fragmented as I desperately search for the right word to fill the gap and I come across as seemingly uneducated (despite the fact I hold a degree in English of all things!). I can stand before the Caterpillar as Alice did and attempt to recite a poem I know, or at least thought I knew, and find that the words come out all wrong. It is a horrid curse and one that I cannot explain no matter how hard I might try.
There are seriously days when I wish that a hookah smoking Caterpillar would slither into my life and present me with a mushroom that would solve all my problems. If only I could take a bit from either side, nibble as needed, and find myself come to some sort of equilibrium would be so wonderful. Then I could happily proceed through life with some sort of stability as I fit into the world around me. Unfortunately, that kind of thing only happens in dreams. In reality, I am beholden to the doctors and hope that they can find an equilibrium with the medication that magically brings me back to somewhat of the person I was before I got sick. As I undergo scans and bloodwork to check tumor growth, biomarkers, and lanreotide levels, I hope that they strike a balance with the shot that allows for more ups than downs, a little less fatigue, and a whole lot more living. Until then, I’ll just hold tightly to Alice as she spirals her way through Wonderland and wait for that magical moment when it all comes together.
Carroll, Lewis. Alice’s Adventures In Wonderland and Through the Looking Glass. New York: Barnes and Noble. 2004. Print.