Refuse to fall down
If you cannot refuse to fall down,
refuse to stay down.
If you cannot refuse to stay down,
lift your heart toward heaven,
and like a hungry beggar,
ask that it be filled.
You may be pushed down.
You may be kept from rising.
But no one can keep you from lifting your heart
It is in the middle of misery
that so much becomes clear.
The one who says nothing good
came of this,
is not yet listening.”
― Clarissa Pinkola Estés
I began writing this post over two months ago and could not find the motivation to spend another minute on the challenges of chronic illness. It seemed to be a bit too “woe is me” and I hate to sound as if whining about things, it is not in my nature. What prompted a return to this draft was a series of events that cast me back into a much darker place of “why me” regarding autoimmune diseases and the way in which illness permeates every corner of my life, even if I like to pretend otherwise.
Spring has a history of being difficult on me. It is this time of year that I was diagnosed after experiencing a severe relapse that left persistent issues. It is also this time of year when I struggle most with fatigue and MS symptoms that flare up constantly with little rest for the weary. Maybe it is the temperature change or the long academic year wearing on me. All I know is that spring gives me a run for my money every year.
Thursday, I woke up feeling exceptionally tired. When I say tired, I mean like having just run a marathon and ready to dive under the covers for a ten hour sleep…that tired. I have a mantra I live by of “energy creates energy” especially in moments such as that morning. With this in mind, I made my way to the gym and limped through a workout, giving myself kudos for having pushed through the sea of brain fog and muscle fatigue. Rushing to work, I was foggy but somehow made it to school on time. Walking in the break area I grabbed a used napkin out of my bag to throw in the garbage, made a quick move on my right leg and momentarily felt the all familiar disequilibrium that plagues me. Before I could gather myself my leg gave way. I raised my upper body abruptly to catch my balance and instantly cracked my head on the hanging cabinet above.
What followed was intense ringing in my ears, pain shooting down to my feet, a leg that felt like jello and a flood of tears. Coupled with the complete embarrassment at this having been witnessed by a coworker, my day was not going well. An “MS day” as I like to call them, had outed me in the most public of ways. I had hurt myself for the first time because of the unpredictability of this illness. The tears keep coming for over an hour, something else that has changed in the past year. My emotions are like floodgates and for some strange reason I have no off button once the gates are opened. It is not depression, it is the inability to control the physical process of crying.
The day progressed with a few mandatory meetings in which I tried to pretend nothing was wrong, multiple visit from the school nurse, a risk management intervention and a local trip to the workers compensation doctor. The doctor was impressed with my vocabulary around neurological illness as well as the many tools I have empowered myself with. This did nothing to change the fact that I was sitting in a doctors office because of a balance and weakness issue caused by my constant companion, MS. Nothing could change that.
Safely arriving home after this whirlwind of events, I collapsed in a heap on the sofa completely spent from the physical and emotional drain of it all. It is unbearably humbling to realized illness can rear its ugly head at any time, disrupting every area of my life in an instant. Relaying this story to my sister, she sweetly reminded me that not everything is because of MS. People lose their balance and hit things all the time. While I especially appreciated her attempt at making me feel better, I knew my MS was to blame. I wish I could rationalize it all away somehow, but I could not. I knew how my leg and dizziness symptoms present and they did ever so grandly that morning.
“There are going to be frustrations in life. The question is not: How do I escape? It is: How can I use this as something positive?”
― Dalai Lama XIV
A constant challenge of this disease is the need for greater emotional intelligence and sensitivity in all instances. This need has been one of my most profound teachers. I have learned I can not expect, nor should I, a suitable reaction from others in their gracious attempts to comfort me. I have learned I will always doubt myself when it comes to discerning what is disease related and what is just age or illness. I have learned because my illness is somewhat invisible others will want to commiserate by sharing the story of a home remedy “that works!” I have learned to be kinder to myself in all of my failings and shortcomings, when I am unabashedly sad or a bit introspective and quiet. Finally, I have learned that I am fragile in my humanity and must be loving and patient with the process.
Our lives are short, minuscule in geologic terms. We are all terminal and it makes no difference what we might be afflicted with. Pain and suffering do not discriminate and come in many flavors. One does not need to have a disease to experience all of these emotions, it is important for those with MS to remember that others have challenges as well. In some small way this understanding helps me feel much less isolated and alone. Growing older gracefully with the added challenge of illness is humbling at best. I know that I am not alone in this journey and look to others for guidance and support when I am at my wits end.
Take a moment and really see those around you. If someone you know is suffering in some way, let them know you are there. No personal stories, remedies or suggestions are necessary. Just let them know you are sorry for their suffering and sit with them in whatever way feels right. That is it. Empathy is not providing solutions, empathy is feeling another’s pain and remaining with them in that place as support. As in all things, simple in its complexity and exceedingly difficult in action. Illness is a constant reminder to connect emotionally with those around us and to continue to be available in this way as long as is necessary. On Thursday, I was reminded that even the worst of “MS Days” is better than no day at all.