Thursday, May 28, 2015

The No-Win Scenarios of Illness

I’ve been thinking about no-win scenarios quite a bit over the last few years because illness is starting to feel like one. I’m starting to think that I am living in my very own Kobayashi Maru simulator.

*It’s going to get nerdy for a second* In the Star Trek universe, the Kobayashi Maru is a simulated test for Starfleet cadets. They are presented with a scenario that is rigged to cause destruction and loss of life no matter what choice is made, and the cadet's response to the test demonstrates their character and leadership skills. The conditions of the test ensure no can “win” it.

My last few appointments really solidified this for me.

Going to Stanford two weeks ago included a lovely stay at our favorite hotel in Palo Alto that was a serious splurge (but so worth it) and a very anti-climactic appointment. I had been waiting to see my neurologist for a year, and in that time I had to leave my dream job, stop driving, and I rarely leave my house. I went through more testing than I can remember in a year, on top of all the testing of the last 5 years. I had to start using a wheelchair, which I must say I’m finally getting pretty good at using. So much has changed. Appointments with him are usually about an hour, but I only got 20 minutes with him because he was running behind.

He explained that although the signs may point to Myasthenia Gravis, none of my test results can solidly confirm it, and he said we have to be absolutely sure because my treatment options going forward if that is the diagnosis “will not be good.” They can cause as much harm as they can help. Woo hoo! 

I have to do a CT scan of my thymus and then potentially have surgery to have it removed. Sometimes Myasthenia can be caused by an enlarged thymus or benign tumors on the thymus. A scan will show if it is causing trouble for me.

Other treatments for MG are immunosuppressants like Prednisone, which are known colloquially as “magic poison” for a reason, IVIG, or plasmapharesis. A constant dose of Prednisone can cause long-term damage and lead to other problems, but many people with autoimmune diseases rely on it. IVIG can also cause other problems. My new local neurologist who I saw last week explained all of these options are “multiple steps up from taking medication and dealing with side effects. We have to be sure.”

I already knew about these treatment options for some time. After I saw the note that said “serological Myasthenia Gravis” on my bloodwork a year ago, I have done a lot of research since then. I had never even heard of MG before that or even knew what a thymus was until a year ago. It’s amazing the things you learn through this process. 

I also learned that the medications I’ve been taking for MG and POTS contradict. I’ve been taking Mestinon for about 8 months, which is typically used to treat MG, and it has been a life saver.  It has made such a huge difference. However, it aggravates some of my POTS symptoms so I’ve had to take a minuscule dose and work my way up to a regular dose. The Florinef I’ve been on for 3 years is contraindicated for MG because it causes muscle weakness and is likely contributing to my breathing problems, which explains why I have never ever felt good on it. My attempts to get off of it have been unsuccessful but I have to keep trying.

I guess this is the thing with comorbidity: medicine is not an exact science and your conditions can conflict, each trying to prove their alpha status and dominance. So if I get the Myasthenia diagnosis I feel screwed with the treatment options. If I don’t, I continue to be exiled in the grey haze outside of the nirvana of diagnosable conditions, still waiting for a tangible label.

In the bigger picture, I’ve had to slowly accept that these conditions are likely lifelong and now it’s time to figure out what the way forward will look like.

It always feels like every ounce of progress that is made must come with some sort of setback or hardship, like the game is rigged for an unwinnable victory. Yet, I believe “defeat” and “success” are not absolute terms. They can be self-defined inside and outside of the parameters of this chronic illness game. I believe we are masters of our own destiny despite whatever external forces try to push and pull us from our trajectory. 

So if I really am in a Kobayashi Maru simulator, I need to figure out some cheat codes to either cope with these seemingly unwinnable scenarios or hope that someone accidentally steps over the plug and I go back to my normal life.

Stay with me on this metaphor. Recognizing that illness is like a no-win simulator is not a matter of resignation—it is a hail Mary, hard-fought, grit-filled realization that acceptance is the only way forward. It is the courage in realizing that you may not win the war but you won’t give up the battle, no matter how ugly it will get in the trenches. But it doesn’t have to be a no-win scenario. You have to find other ways to “win.”

You can change the game, change the rules, change perspective. Dig deep and find your inner James T. Kirk and change the conditions of the game and get away with it on pure charisma and bad-assery.

You have to find your own cheat codes. Even if we can’t rid our bodies of illness, we do have the power to change our perspectives. These are some “cheat codes” I’ve come up with, things I think of or try to remember while fighting what seems like a no-win battle.
*You can find a printable version here

     1.   In the dark depths of a bad day or a bad week(s), try to remember that they serve to punctuate the sweetness of the ok days and even the once in a blue moon great days

     2.   Remember what you do have control over in terms of your illness and your life, whether it be your diet, your routine, your exercise efforts, your attitude, your will to keep going, your passions

     3.  The hard times and dark periods are like battle medals: you fought hard to win them. You survived this long, so you can survive whatever may come

     4.   You can live in denial that leads to endless frustration, or you can live with acceptance and find a path forward for the best life possible. This one took me a long time to really learn

     5.   The past and future barely matter. The present is really the only reality that matters. Live the fullest life you can in just this moment. 

     6.   You are the ultimate decider when it comes to how you handle and treat your condition. I really believe that we still have choices, even when it comes to medical treatment. Your intuition is an asset. Hold onto your voice because you are not powerless

     7.    Even if you have a tenuous relationship with hope and you and hope part ways for a brief time, hope will always be there waiting for you to return when you need it most

     8.   You have a story to tell that matters. Never surrender it

     9.   You play this game long enough, you get even better at it

    10.  Success and victory can be self-defined. The conditions of the game may constantly change and continue to seem insurmountable, but you can adapt and “win” each day on your own terms

Bonus: Chocolate is a great listener 

Keep up the good fight no matter what obstacles are placed in front of you. Cheat if you have to. We got this. 

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Thursday, May 14, 2015

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 durĂ©e.—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?