Finding Insignificance

I have mentioned before that I’ve become a bit obsessed with prehistory, particularly ancient Britain, since I had to leave my job almost a year ago. I’ve watched every documentary I can find and have been accumulating more and more books (the last thing I really need). If there is only one benefit to not being able to work and having to stop teaching, it is that I have time to finally indulge interests I’ve had for a long time. My husband has always been obsessed with prehistory so he is over the moon that I’ve finally come around.

As an academic and a teacher, I used to view every piece of knowledge I came across as an object to exploit and claim at some point. Everything I read, even just articles in magazines, I would think “how can I use this? What purpose can I find for this?” I focused so much of my energy on very small spans of history and the minutiae of over-specialization, always with the intention of using any knowledge I gained either in writing or in the classroom. 

I find it ironic that I only came to understand what “the life of the mind” really was when I got a break from the academic world. Now I know that this knowledge I’ve gained about prehistory will likely not have any purpose  except for feeding my curiosity, but having the time to fill my brain with information so far afield of what I usually invested my energies in has been a true gift. My body may be kind of broken but I at least still have my brain, well mostly at least.

This knowledge also gave me something else completely unexpected, and I think deep down this is at least partly what really draws me to understanding the narrative of human history we rarely read about and has no written record. It has helped me understand the long arc of time and the expansive human story—and ultimately the insignificance of my own experience. 

Suffering is an essential part of that human story, so my life and my suffering can be placed in a long chain of human stories that stretches back further than can be really be fathomed. I am not religious by any means but maybe a little spiritual. I have come to understand the draw of religion in some sense because of its ability to diminish personal suffering and offer comfort that there is somehow purpose to it. 

I never expected this knowledge to not just make my brain spin in curiosity but also to help me see my own experience of illness in a different light.

Here is a passage from Neil Oliver’s A History of Ancient Britain that discusses time as more infinite than we are equipped to perceive:

“In the life of planet Earth, the actions of individuals—warlords, politicians, farmers and the like
—are the twitches of ticks on an elephant’s back … Beneath everything is inertia, the tendency for nothing to happen. Above that is a motion so slow its currents and rhythms could be sensed only by an immortal with all the time in the universe. These the rhythms of geological time that move tectonic plates, raise mountains and transform mud into stone by the use only of pressure and time.

Fernand Braudel, leader of the Annales School after the Second World War developed this concept of the longue durée.—the long term. He imagined time like an ocean. On the surface are bubbles and flecks of foam that come and go in the blinking of an eye. These are the moments we humans can perceive, the actions of individuals and the stuff of years. The bubbles and flecks ride on waves that are like the lifespans of nations and empires, and the substance of centuries at least. Finally down in the dark are the great, impossibly slow ripples within the deep that support, and occasionally move, everything above.”

Ultimately, the human story is only a minor, forgettable side plot in the long, complex narrative of our planet and the universe. Now that is truly comforting in itself. Thinking about time and suffering in this infinite sense has helped me be mindful of not letting myself be consumed by the frustration and disappointment moment to moment and day to day. Suffering, struggle, chaos, and perseverance are fundamental to life. We persist and then we perish. This is our story.

It sounds strange that realizing the insignificance of your own experience is comforting, but when illness rips your worldview and identity from you, maybe it’s essential. I think the isolation of illness can really magnify a sense that you are alone in what you are experiencing; it definitely has for me. It's easy to feel that no one understands what you are going through. I have grasped at things to make meaning from this experience and to understand it, and somehow thinking about my life and this human story as a single note in a melody that has been building and playing indefinitely has helped and been a source of strength. Our experiences are insignificant and universal at the same time.

In some weird way it has worked for me. I guess you have to find meaning wherever you can. 

So if you ever want to discuss the latest theories about Stonehenge, watch Spinal Tap, swoon over BBC documentaries (which are miles ahead of American documentaries), I’m your girl. Someday I’m going to be well enough to travel and make a pilgrimage to the UK and finally cross it off my bucket list.

I am curious to know if any of you have also found knowledge, ideas, or hobbies that unexpectedly helped you cope with illness in some way. What has helped you?

The Spoon Theory

You might be wondering why I am talking about utensils in this post, but in the chronic illness community, there is often much discussion related to spoons and not because we all have a strange affinity for cutlery. 

For the chronically ill, it is a battle to perform all the necessary daily tasks (and maybe even some tasks you want to do) within the confines of our limited energy and physical strength. The only way I can describe this to the non-chronically ill is to imagine the worst flu or illness you’ve ever had. You’re sick in bed, exhausted, in pain, you can’t stray too far from a bathroom, yet you are supposed to complete all your typical daily tasks (such as going to work, taking care of children, going to the grocery store, etc). Yet, even accomplishing one of these things is impossible. So even for those who are healthy, you’ve experienced what it’s like to live with limited spoons. 

For the chronically ill, this is what your day to day life is like except it will (for many of us) never go away. Postponing important things until you are flu-free and back to full health isn’t possible. “Spoons” are a metaphor for the limited energy those with chronic illness have and the decisions one has to make to “spend” them, often involving hard choices. Christine Miserandino created this metaphor while describing what her life with Lupus is like to a friend, and you can find her story here. She showed her friend 12 spoons and detailed how to spend them wisely to manage illness and disability while trying to live a full life. Often, six spoons may be needed to manage symptoms a day so six are available to complete daily tasks. The chronically ill and disabled have to choose wisely how to spend those spoons. If you use more than your allotted spoons, you pay for it by losing spoons the days after.

This metaphor has become essential for those who are ill and even those who aren’t to understand the struggles and triumphs of managing illness while trying to live. Like most self-defined labels, “Spoonie” is a term claimed by many as a form of empowerment, understanding, and self-expression. The term connotes a sense of pride and a sense of community. When I tell my husband “I’m out of spoons,” he knows exactly what I mean (though he often tells me “why don’t they say batteries instead of spoons?” he still gets it). Whether you are chronically ill or not, anyone can be initiated with this metaphor. 

This last week for me was a good example of how I live with limited spoons. Miserandino described 12 spoons, but over the last six months as the likely-though-unofficially-diagnosed Myasthenia Gravis combined with POTS is making me often immobile and barely able to leave my couch or bed, I’ve been living with 3-4 spoons a day. It's not enough to do the things I have to do (showering, getting dressed, eating, etc) and the things I should do (clean and exercise). This doesn't include the things I really want to do (play music, leave the house, see friends and family, cook, bake, paint, skydive). Ok, skydiving is not a goal but I like to dream.

Is it possible to get more spoons? Exercise, for me at least, is the only thing that gives me a return on investment for spoons. Deconditioning and exercise intolerance are very common for POTS and MG, but it is important to maintain strength and stamina. I’m a former athlete and have always been active, and exercise has often been more beneficial to me than any medication I’ve ever taken. I reserve spoons for it. I'm also supposed to be doing physical therapy right now, which requires at least 2 spoons.

So I have to choose very wisely. A few months ago, I told my husband I wanted to bake something so he asked me to make some ranger cookies. Since life isn’t worth living without chocolate, I found a recipe that included some. He bought me some ingredients and I printed the recipe.  I wanted to do this for him since he is a fantastic caregiver and I rarely get to do things for him. 

Those ingredients sat in the bag in my kitchen for two months because I couldn’t muster the energy to make them. This week, finally baking them was one of my goals. I saved some spoons and made them (while sitting of course). Having Dysautonomia means you and gravity are frenemies now. But you can be fabulous and cook, bake, teach, sing, anything else while sitting. Although I had to lie on my couch in between batches to recover, I felt badass and accomplished, and he loved them. I overspent on spoons but it was worth it. A crunchy, chocolate-y success.

Husband-approved cookies. Yes, the beard is real

I mentioned in a post last week that I was supposed to go to Stanford this week for an important test (a single fiber EMG) so I could finally get a likely diagnosis for Myasthenia Gravis. I can barely leave the house at all right now so traveling 2.5 hours each way for this trip was going to be a massive endeavor, even with my husband’s help. A trip like this could take 15 spoons, especially since my reward for getting there involves being stabbed with a needle repeatedly. I booked us a hotel to make it a two day trip to make it more manageable. I also had to stop taking the Mestonin I recently started taking (a drug that treats MG and has been used off-label to treat POTS) for this test. I’ve been having difficulty breathing for some time, but along with other symptoms, it has been worsening over the last few months. I’m taking a miniscule dose of Mestonin but it is doing wonders for my breathing issues already. 

When I stopped taking it, the breathing problems returned full force. Not being able to take this medication cut into my 3-spoon-a-day allotment. As soon as I opened my eyes on the day we had to leave, I knew it was going to be a 1-2 spoon kind of day. I was in trouble. I tried to lie in bed for hours before we had to go. We put off leaving as long as possible, but when it was time I knew there was no way. The glorious effects of the Mestonin had worn off and I was looking at having 0 spoons on a long day of traveling. 

The test is rescheduled for a month from now and I’m crossing my fingers I can gather enough spoons to get there. Maybe I'll start a kickstarter campaign for people to donate spoons.

These are examples of the difficult choices and constant measuring of cost to benefit ratios Spoonies have to make. I have been living with POTS for years now, but I’m still learning how to live within my capabilities and limitations. There’s a learning curve with chronic illness. I rejected my limitations and fought against them, but I’ve paid dearly for that folly. The spoon theory has helped me understand that I have to live a life I am physically able to live, not the ideal one I would rather be living. 

Living within your spoon allotment lets you live a fuller, authentic life. I recommend explaining this metaphor to those close to you so they understand that despite your limitations, you are doing the best you can. Forks, knives, spoons, whatever, we’re chronic illness warriors, living bravely and with dignity. Use your spoons to live the fullest life possible.

A Spoonie created a choose-your-own adventure game based on the spoon theory that I highly recommend, especially for non-Spoonies, to understand what it's like to live with chronic illness. You can find it here