The holiday season means a lot of different things to a lot of different people. Sure, some celebrate Christmas, others celebrate Hanukah, and an increasing minority celebrate no religious holiday at all. But I’m talking more about the fact that this season reminds me of the eruption of an emotional volcano, when many adults ooze with a lava of anxiety, trepidation, fear, anger and resentment. Really, it isn’t very straightforward. For me, I love the smell of the Christmas tree and the excitement of driving home with it on the roof- the annual ritual of bad Christmas music blasting and tree trimming fills me with excitement and gratitude. But it also leaves me feeling a bit guilty and more than a little bit sad; this idea that my family sits in a warm home buying way too many material gifts while the vast majority of the world population sits in desperate poverty. It’s the ultimate paradox of Christmas: the season brings to the forefront the deeply disturbing material culture that we have become so accustomed to, and the pettiness of family drama often drives home this idea that our priorities have become warped, and our morality often adrift.
Like many, I spend a lot of time reflecting this time of year. I grab at opportunities to better myself (read: a gym membership to make my ass just a little smaller and a package of mindfulness meditation sessions to learn how to keep my cool just a little bit longer). I think about what I am grateful for and ponder the ways in which I can dedicate my time and money to make the world just a little bit less sad. But, more recently, my health has put a lot of these ideas in a precarious position. Full-time work has become a lofty dream and regular workouts? Impossible. Time to spend with friends and family is often scant and the sicker I get, the more in debt we become and the more priorities need to be regularly reassessed. This puts me in a position- and I have never been more sure that those of you with chronic illness find yourself out in this same corner, year in and year out. I think many of you able-bodied readers can relate, too, as adulthood forces us to continually reassess our priorities and subject ourselves to criticisms in the process.
Whether it be a result of the stresses of parenting, or the eternal hardships of chronic health issues, we are forced to make priorities. This isn’t a terrible thing in and of itself: it forces us to critique our relationships and become critical of how we spend our time and money. In other words, we become masterful at prioritization. On the downside, we are subject to deep and hurtful criticisms by many, as we are not the only ones that have opinions of how we should spend our precious resources:
Or, another wildly familiar complaint:
“She had the money to buy [insert here], but couldn’t do [insert here]?!”
Being chronically ill is shitty enough, but hearing these things can put us almost over the edge. Often, 100% of our time and energy is dedicated to simply being able to wake up in the morning- and when that doesn’t need to be our priority, we become laser-focused on how we want to spend our fragile and fleeting time. Yes, you read that correctly: I said, “want” and not “need.” Because illness does not preclude us from allowing ourselves to live some semblance of how we’d want to live our lives. In fact, illness only makes it all the more important that we do what we want when we can. We are painfully and acutely aware that tomorrow may not come and, if i does, we may not be well enough to experience it in health.
It has taken nearly 16 years to get to where I am today. It has been a project in building confidence, strength, and optimism. Where I am today is a place that is nine surgeries deep, with one more on the horizon. It is a place that has seen five rounds of IVF in 2016, with one more impending. In 2016 I lived through the heartbreaking loss of a baby, the loss of my ability to carry my own child and a mind-staggering medical and family-building related debt that could have put three children through college.
But it also saw a once-in-a-lifetime trip to Ireland with my Irish grandmother, mother, daughter and aunt. It wasn’t easy: I had a pseudoaneurysm in my groin and was in considerable pain when I got on that plane- but the memories were priceless and I put a lot on the line to get there. I did this because my grandmother has dedicated her entire life to the wellness and happiness of myself and the rest of her family. My last chance to experience where she was raised with her by my side was something I was going to raise hell to get to. And I did. For her. For my daughter— but mostly for me. And I will offer no apologies for it.
2016 was, hands-down, the most emotionally complex and trying year of my life. But it brought me to where I am today; to this place I have been aiming to get to for nearly two decades. It’s a place where I have removed myself from the expectations of other people. It’s a place where I allow myself to experience joy and happiness when I am well enough to do so. It is a place where I constantly question whether my choices are just and moral, and if my answer is yes, my answer becomes the only one I care about. Because my life can only be lived by one moral compass- trying to live by several will only lead to an abyss of resentment and anger. Recently, a fellow IBD patient called me asking for some pretty general life advice. This is what I told her:
“You’re going to have very limited periods of time where you are well enough to do the things you love. In those times, do what you love and do not apologize for it. And, perhaps, above all else, never expect anyone to understand what your life is like. And as you let go of your expectations of them, let go, too, of their expectations of you.”
For those of us without health on our side, Ferris Bueller’s advice rings especially true:
“Life moves pretty fast. If you don’t stop to look around once in a while, you could miss it.”
And in those few times you have the space and health to look around, just make sure you’re looking at the things, places and people that you want to see: those people and places that have earned your love and respect. The few that show up to your hospital bed and stand by you when things are terrible- not the ones that are only there when it’s convenient and desirable. There are no barriers to this: no gender, age or blood-relation can pardon a lack of respect or a show of love for you when life goes low.
So let go of all of the bullshit. Because unlike those with health on their side, we really don’t have time for anything…or anyone else.