I like to write useful posts, and I’m going to try to spin this “leaden” topic into gold as it were. I think I can do it.
I am certainly getting many opportunities to engage in circumstantial alchemy at my college. I have to confess something. I had a rather disheartening interaction with a fellow student yesterday, and, because I process through writing, I thought I would write about it.
I’ve not written a lot about my health issues (at least I don’t think I have). My personal view of my health journey has always been that I’m a healthy person fighting off illness rather than I’m a sick person fighting to be well. That paradigm has kept me optimistic and positive. Sometimes, however, when you’re dealing with an unrelenting, chronic condition or many unrelenting, chronic conditions, there are trying days, and the illness(es) wins a few rounds. Truth be told, I’ve been a healthy person fighting off illness since early childhood. I’ve spent months that probably add up to a few years of my life in hospitals, and I carry multiple diagnoses and see four specialists outside of my primary care physician just to manage all of these diagnoses. Frankly, I became a bit discouraged because I wondered if I actually had one unknown condition that was the umbrella diagnosis manifesting as all these other health problems.
Last year, I ended up in yet another specialist’s office seeking more help because I suspected I had stumbled upon the X factor–the unknown umbrella diagnosis. I was, thusly, diagnosed with Mast Cell Activation Disorder/Mast Cell Activation Syndrome, and it could very well be the foundational problem underlying every other health issue I have. It is also a giant pain in the ass. My doctor moved quickly to get the right protocols in place so that I would stop experiencing anaphylactoid reactions every few weeks, and she connected the dots between her diagnosis and the other specialists’ diagnoses. That was a huge relief. She indicated that it was indeed quite possible that I didn’t actually have all these other conditions; it may all be a mast cell disease at play. I was both shocked and awe-struck. I left her office with an Anaphylaxis Action Plan in place. I now wear my Medic Alert bracelet all the time. Everyone close to me knows how to administer an Epi-Pen, and my very long list of allergens is up to date. I get monoclonal antibodies infused at the hospital every four weeks, take Gen 1 and Gen 2 antihistamines daily in addition to mast cell stabilizers. I follow a low histamine diet. I do my best every day. And yet, as most of us know, sometimes your best is not good enough.
Sometimes things still happen like stress or viral infections or food contaminants. Or, a nurse doesn’t administer an infusion correctly, and a mast cell activation event occurs that leaves you in bed for 10 days sending you to the ER for fluids, Zofran, and steroids. I didn’t know that could happen!
(Actually, two nurses mistakenly injected Xolair directly into my abdomen intramuscularly! Like they were rabies shots!!!)
It was while I was lying in bed last week feeling like I was run over by a truck and working myself into a nice, foamy lather over missing a week and half of classes that I comforted myself–“Your friends at school will get your notes for you. It’ll be okay. Your teachers know you. No, you’re not a slacker. You won’t fail out of grad school…”
So, finally, here is my confession. Here is the lead. When I was finally able to return to school, I greeted the people I knew and thanked them for putting notes in my mailbox. I approached a friend I’ve spent time getting to know, and her affect clearly indicated that she wasn’t interested in talking. I thought that she could be distracted, but then I realized that she was not interested in talking to me. I moved to end the conversation; my final remark was a movie recommendation and she almost scoffed, “Well, at least you did something positive last week.” Whoa.
Did you catch that? That’s shame right there. Whether she knows it or not, she was condemning me for being sick last week. For not meeting her criteria of engaging in “positive actions”, and embedded within that sharp retort was blame: “It’s your fault that you’re sick.” She then went on to ignore me–to distance herself from me–a perceived sick person. And, from an anthropological perspective, this is very mammalian–unless, of course, you’re an elephant.
“Some scientists studying wild elephants have argued that, in addition to cooperating for survival’s sake, the creatures are capable of genuine empathy. Poole recalls, for example, one elephant flinching as another stretched her trunk towards an electric fence; it was fortunately inactive at the time but had been live in the past. Elephants often refuse to leave their sick and injured behind, even if the ailing animal is not a direct relative. [Joyce Poole, one of the world’s foremost elephant experts and co-founder of the charity ElephantVoices] once observed three young male elephants struggle to revive a dying matriarch, lifting her body with their tusks to get her back on her feet.” (Scientific American)
I felt as if a stone were in my stomach for the rest of my class. Like my heart had dropped low down into me. I was disheartened and disappointed. I did not understand this social interaction at all until just moments ago as I was trying to write this out, but I see it now. There was no compassion, and I don’t say this because I feel entitled to it. I merely observe it.
Living with a chronic illness is…weird. It’s too easy to say that it’s hard. For me, it’s not hard exactly. I find it strange. There are days in which I feel perfectly fine. I don’t have any pain, and I’m almost not fatigued at all. Of course, my diet is very limited. I’m practically a vegan because I can’t tolerate most animal proteins particularly bovine meat and milk. I have celiac disease so that means no gluten, and I’m deathly allergic to quite a few fruits and nuts. And now what with the MCAS diagnosis, I have to pay attention to foods that are “histamine liberators”. There are days that it feels very complicated, but, for the most part, I don’t really mind. Every day that I don’t literally almost die from anaphylaxis, I’m truly grateful. I’m not one to think in terms of fairness or justice because that smacks of a victimization. Illness is part of the human experience. Is it fair? Well, I cannot answer that. Suffering is part of life.
What I have gleaned from my experiences with long-term, chronic health issues is empathy and compassion for people who suffer from, well, just about anything. To quote John Mulaney, adult life is so goddamned weird. We do not have the privilege of foresight. We don’t know what lies ahead of us, but we do have the opportunity to cultivate a better personality with a richer substance and character that allows us to meet the unknown with courage and resiliency. And, what of this unknown? You may never get sick and stay sick a day in your life, but someone you love might. What’s more, they may do everything right and still never heal properly. Then what? Will you blame them? Tell them that they aren’t positive enough? Good enough? Strong enough? Dedicated enough? X enough? Will those well-meaning judgments most likely intended to spur them on to try harder actually help them? No. Why? If a person with a chronic illness could heal from trying harder to heal, then they would already be better. Trust me.
We are all human in the end and will shuffle off this mortal coil. Where then is the gold from this lead? I think that it is to be found in the how. How we live. How we treat others. How we view others. Even how we go about experiencing our diseases and disorders if we have a chronic condition. The one thing we are guaranteed is that we will all come to be intimately acquainted with suffering in either ourselves or other people. What then? Compassion. It is the only legitimate response. It validates, legitimizes, heals, and grows connections. Compassion mends the broken places and bridges the divides.
What of the people who blame, shame, judge, alienate, invalidate, and ostracize us for things that are no fault of our own? Well, sometimes we learn how to be better humans by observing others make mistakes.
If I wasn’t fully present to the reality of compassion and its utter necessity in the world before, I am now. I don’t feel angry at my fellow student. Oddly, I feel grateful. Her impoverished response acted as a mirror for me. For those of us who do deal with chronic conditions whatever they may be, we need to have compassion for ourselves because sometimes it’s in short supply. For me personally, I want to continue to develop compassion in my character and be mindful to exercise it. Unfortunately, you can count on other people to judge what they do not understand, and many people do not understand chronic illnesses particularly people who have been healthy for most of their lives. It is a lonely place when you are your most frequent and best advocate, but sometimes that is the road set before you until you find your tribe.
And, so, I will raise my voice today to join the other voices of compassion. There is absolutely no shame or reason to accept judgment if you have a chronic illness. Regardless of the overflowing fount of opinions in your life and the world at large, you deserve compassion, kindness, empathy, and a safe place to land where good friends will love you today. Just as you are.
Keep going, MJ
“Love and compassion are necessities, not luxuries. Without them, humanity cannot survive.”
― Dalai Lama XIV,