Thousands of candles can be lit from a single candle, and the life of the candle will not be shortened. Happiness never decreases by being shared.Buddha
There are many moments in this crazy thing called life that are wrought with hilarity – when circumstance and happenstance collide in perfect comedic timing to deliver a small moment of unadulterated joy. In these precious moments, we smile, giggle, chuckle and laugh for a number of reasons. But ultimately, we laugh because, for the most part, LIFE is fricking FUNNY. Sometimes it’s funny-ironic, sometimes it’s funny-peculiar and sometimes it’s funny-ha-ha.
And, sometimes, life is not funny at all, and yet, we STILL laugh – as a way to cope or escape, as a distraction or to hide more intense emotions. Sometimes we laugh simply to keep ourselves from crying. We laugh in the face of adversity because on some days, it’s all the emotion we have left.
I often think back to a family gathering many years ago, held shortly before my paternal grandpa was moved into a long-term-care facility for Alzheimer’s disease. Grandpa had become increasingly confused in recent years but was still fairly independent. Sitting around the table playing the obligatory card games that my family loves, my grandma, always intent on keeping the game on pace (probably because she won most of the time), made a comment to grandpa about paying attention – it was his turn. Without hesitation, he declared “In a minute! Some of us aren’t playing with a full deck here anymore.” Hi eyes twinkled as the room erupted in good-spirited laughter, and I caught him winking at grandma. That moment has stuck with me ever since and continues to be one of my favorite memories of my grandpa. His sense of humor in all things remains an inspiration to those of us he left behind a few years back, and I strive to maintain a similar demeanor when faced with my own medical trials.
One of the few memories I have been able to recall from my time in the hospital with autoimmune encephalitis was the day of my first electroencephalogram (EEG). An EEG is used to detect brain wave abnormalities, such as seizures, when dementia or encephalopathy is suspected. Electrodes placed around your head are used to relay brain activity to a nearby computer where results and a live video feed are evaluated by a specialist.
Seems simple enough. However, when you are suffering from brain injury, sitting still for any period of time is practically unheard of and short term memory is nonexistent. The moment they connected the wires to my head I wanted to touch them and play with them. My dad had the thankless job of keeping me preoccupied for as long as possible so the staff could get the data they needed.
We soon discovered that the EEG monitor spiked differently according to various movements I made, so we began testing that theory by sticking out our tongues making various facial expressions to see what it looked like on the data readout. When we realized they were monitoring via camera as well, we sat very still for moments at a time – in sync – to make the specialists in the other room think the camera feed was freezing. Sitting in the room that day, laughing at our little shenanigans, I had a rare moment of clarity that I hadn’t experienced in some time. Maybe I’m able to remember that moment among so many others lost to the pit of the disease because for even just a small moment I was able to let go and just laugh.
That is what I remember about that day. What I don’t remember is later heading to the adjoining restroom, after repeated promises NOT to mess with the various wires and tabs sticking to my head. After a suspiciously quiet amount of time, my family asked me to open the door. This was another dirty game the disease often tricked me into playing – the one where I would lock myself in the bathroom until I could be coaxed out or a nurse could arrive with a key. I was not allowed to be left alone for any significant amount of time for this very reason. The day of the EEG, after I opened the door, I casually turned back to staring at the stranger in the bathroom mirror. I had removed more than half of the electrodes as well as the IV in my arm and was asking, “Do you have a pair of scissors so I can finish…?” I didn’t even realize what I had done was wrong. The dejected EEG specialist reappeared to remove the remaining electrodes, cutting the test short. The doctors would have to make do with what they had – just as they had done with my MRIs, CT scans, spinal taps and blood draws. They took what they could get but I could never seem to manage to make it all the way through any of the tests.
Much later on in my recovery, when I was told the full story of that day, I couldn’t stop laughing. My family did not share in my amusement. After all, they had lived through it in real time, when it was scary and confusing and the end of the story wasn’t clear. For me, by the time I heard these tales, I was merely an observer after the fact. I couldn’t connect the person I was with the things I had done. So I was always a little bit removed from the events – a character in a story someone told me about myself.
A lot of my actions during the months I was under the influenced of autoimmune encephalitis (AE) could be considered amusing. Of course, some are funny-ironic like when the medications I was taking as a result of my first autoimmune disease turned out to be the same ones used to treat the second autoimmune disease, and therefore, may have played a role in diminishing the severity of long term damage the second time around. Some are funny-peculiar, like the random movements of my arms, amid feverish hallucinations, trying to explain the visions in my mind through complex acronyms, symbols and invisible spreadsheets I drew in the air. And then, some are funny – ha-ha, like asking my family members to take certain actions during their visits, and then claiming that I had mentally forced them to act through the powers in my mind.
And yes, there are too many parts of the disease that are so very NOT funny; in fact they are devastating. The challenge then becomes one of balance – allowing yourself to feel joy without detracting from another’s pain. Giving yourself permission to take the disease seriously without taking yourself too seriously. There are many who struggle to find this balance, due to depression, societal scrutiny, or the overwhelming weight of so many ups and downs. But, believe me when I say that at the end of the darkest days – when medicine has failed, faith has been depleted and a positive outlook is elusive, sometimes that one little lifeline of laughter can be your saving grace.
This attitude is what led me to host a “movie premiere party” the night the documentary of my journey with anti-NMDARE was aired last year. On a night that could have been sad and easily overshadowed by intense emotions brought on by memories of my time in a bad place, my family and I chose to celebrate. I bought a red carpet and rolled it out in my living room. I signed head shots and handed them out to family when they arrived. And later I gifted everyone with their own mini academy awards for their contributions in my recovery (my dad won best screenplay for taking extensive notes throughout my hospitalization, others won awards for wardrobe (aka doing laundry), set design (aka moving me out of my apartment), and to myself I bestowed the award for outstanding performance in a drama. And that’s how, for that night at least, we celebrated my recovery rather than mourning the unfortunate losses inflicted by illness.
The same motivation continues to drives me in sharing my stories — in hopes that others will also be able to find a small ray of light along the dark path of this disease. What I have learned, perhaps one of the most important gifts I inherited from my grandpa and my dad – and many others along the way – is that a little dose of humor can go a long way towards a balanced recovery.