What do you do when your illness seems to be stripping away the very essence of who you are? Well, I don’t know have the answer, but it is a question I have been repeatedly confronted with over the past couple of days.
Yesterday, when I left a lovely lunch with a friend and walked back to my car, I felt intensely lightheaded and dizzy, like I was having an asthma attack that was reducing my blood oxygen without actually having lung inflammation. My muscles felt achy and definitely not terrible but definitely “off,” my chest was hurting in a way that did not feel like costochondritis, and the nausea that I had assumed that I had knocked out earlier in the morning with Zofran had returned. My first instinct was to go back inside the store/restaurant, because I was about 50% convinced that I was on the verge of passing out and did not necessarily want this taking place while I was isolated in my car, but I also had a strong feeling that I might throw up if I stood up again so I sat in my car for just a moment. I tried to ground myself, leaning my head back with my chin up towards the car ceiling as if I was waiting for healing to drop down from heaven, before I decided that I was definitely okay and safe to drive. Feeling somewhat better, I headed off to my next activity.
As I was driving, I thought about plane tickets to Paris or Cape Town or Buenos Aires or Seoul. I thought about traipsing through Spain or meeting new friends in India. Whenever I become fixated on flights I know that I am not at all myself, and that I am trying desperately to find something bigger, grander, and greater. At the same time, I want something smaller, cozier, and more intimate. I want conversations about memory in the library at 2 a.m., I want to consistently have the courage to take someone’s hand when I know they are hurting, and I want to bake desserts using recipes that are way above my skill level and destined to become sugary disasters. Desires for something grand and for something simple seem to coexist.
|Shout out to Ben and Jerry’s for their
vegan flavors, and shout out to my
stomach for being able to handle it.
Later in the evening, I found my muscles so achy and my body so inexplicably exhausted that I locked my car doors, fell across the center console and the passenger seat, and took a twenty minute nap in a parking deck. I would never do this normally, but I quite literally could not summon the energy to walk to my dorm or to a library or really any other building in which sleep might have been even remotely acceptable. I felt so broken, but did not even have the energy to cry. “I am feeling really not like myself,” I texted to a friend, slightly confused about how to order my words, but this explanation seemed to fall short of what I was actually experiencing and so I barely put any effort into further describing the situation. My fingers stumbled clumsily over the keyboard and my phone felt heavy in my hand. With the sense of longevity that sometimes so cruelly accompanies pain, I wondered if I would ever feel like myself again. I pondered this existential question this while slumped across the seats of my car with some of the heaviest fatigue I have ever felt.
By late last night I was able to laugh about these incidents, the ridiculousness of this entire semester, and the weird health challenges my body is always testing me with. But all of these moments in the car were not funny. They were terrifying. Not feeling like myself is not funny, either. It is equally, if not more concerning than the purely physical symptoms, a direct and explicit threat to my personhood that leaves me feeling completely lost. I feel like everyone is so worried about all of the parts and pieces of me, my lungs, joints, heart, tendons, muscles, esophagus, stomach, lymph nodes, etc. The truth is, in my most desperate moments I pray for intactness, not for each system or bone. I pray to feel like myself and for my sense of identity to be preserved despite all of the medical chaos. Intactness is a difficult element to measure, considering that I cannot peer into another reality and see where I would be without all of my health problems. Perhaps it is a good thing that we do not have the ability to see our best selves.
Whenever I picture the life of a healthy me and scold myself for not accomplishing all that I imagine her to have achieved, I think of a comment my dear friend Cara left for me about a month ago. “The best of you is just a saying from those who have never experienced chronic disease,” she wrote, “you ARE the best you can be every day.”
I also think of a conversation I had with Faith last year when I was in New Orleans. I had called her in the midst of what I now know, looking back, was one of the most desperate and lonely moments of my life so far. “You are doing your absolute best,” she assured me, gently but with a tinge of authority that forced me to accept her reminder. Maybe a nap in a parking deck yesterday was my best. I am grateful for these two friends and their healing words.
When I am really not feeling like myself, I try to be intentional about doing things that restore my sense of identity. Hanging out with old friends, watching Grey’s Anatomy, cuddling up with my dogs, writing essays, and doing my makeup all remind me of who I am and what I enjoy. Today, I had the opportunity to spend most of the day shopping with my sister, Hannah. I almost cancelled our outing, because I woke up with painful knees and fingers, but I decided to push through because I knew spending the day resting would be good for my body but not so good for my soul. I looked rough and felt rough, but I enjoyed the snow and enjoyed shopping and enjoyed time with Hannah, and these are the things that will matter even many years from now. So why did I skip studying for finals to go to the mall? Because this is the only way I know how to live in the face of all of these questions about who I am and whether or not I will be okay. Perhaps it is not the best or most sophisticated way, but it is the only way I have figured out.
I hope to stay intact, especially if the lightheadedness becomes a recurring problem, which I do not anticipate but would not be shocked by given all of my other #MysteryIllnessCrisisOfFall2017 symptoms. I hope to feel like myself, and I must admit that I am pretty anxious about this given that I am having surgery in just ten days, after which I will certainly not feel like myself for a little while during recovery. I am lucky to have wonderful friends, both at UNC and elsewhere, who stick with me even when I don’t feel like “me.” I cannot imagine how much more painful yesterday would have been without quality time with three different friends, each of whom offered words of encouragement and empathy and understanding. I cannot imagine pushing through today without getting to see Hannah, my hilarious and gorgeous sister who seems to view me the exact same way whether I am bouncing around or warning her that I might throw up at lunch. If they all managed to see a “me” through all of this mess, then maybe I can manage that, too.
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