At the end of the year, we assess the past and look forward to the future. We make plans, set resolutions, outline intentions and dream of goals. We buy fresh notebooks with blank pages and imagine what may be written on them. Our calendars stretch before us with blank days to be filled with exciting and new adventures.
Except if you live with a chronic illness. Then this time of year brings a painful reckoning, just as milestone birthdays do. When you’re sick for years, you look back and survey the wreckage and see all that your illness annihilated. For me – that’s been my career, financial security, motherhood, my thin body, freedom, self-agency and self-reliance, private health insurance, marriage and nights and nights and nights and nights of sleep. I could list more, but if I sat and thought about it all, I’d be as wrecked as my life. I’d be a bucket of tears because I don’t dare make a bucket list. Even the ability to dream has been stolen from me.
Once, an interviewer asked me where I saw myself in five years. I replied, “I don’t do that anymore. It’s too painful.” The divide between what I may imagine and what pans out is too vast. The disappointment overwhelms me, so to manage that frustration I curtail my aspirations. I’ve been sick now for nineteen years. I was a young woman of 34 with so many dreams and hopes in 2000 when I got sick. At 51, those dreams are gone, most never to return or to be reclaimed.
So what is a safe and pragmatic way to approach the new year? What do we need to do in order to find meaning in our lives despite chronic disability? How can we celebrate and be joyful when small daily tasks like feeding, cleaning and resting our bodies are so challenging? Why look forward to another year of mere existence?
There are two ways to look forward without anguish. First, we must redefine what it means to hope. And second, we resolve not to do, but to be. In that way, we can aspire to a mindset that can actually enhance our lives.
When we hope, we look towards some thing, some event, some time. We desire and yearn. We expect. We trust and have confidence. I recently discovered a new philosopher, Benedictine monk David Steindl-Rast. In an interview, he said, “Hopes are something we can imagine…but hope, in a truly spiritual sense, is openness for surprise, for that which you can not imagine.” In suggesting we stay open for surprise, Steindl-Rast advocates we relinquish our expectations.
As does the classic philosopher Seneca. I first read of Seneca during a long visit to the Mayo Clinic in 2001 in Alain de Botton’s Consolations of Philosophy. In a chapter called “Consolations for Frustration,” de Botton described how Seneca had trained for a career in politics but in his early 20s got very sick (with what historians believe was tuberculosis). As a result, he fell into a suicidal depression. “His experiences had taught him a comprehensive dictionary of frustration, his intellect a series of responses to them,” writes de Botton. 1
If when we make our wishes, we can stay open and flexible, then when they meet an unyielding and obstinate reality we can avoid unpleasant feelings such as rage, bitterness and self-pity. If we don’t expect but try to stay open, we can enjoy more. We have to recast hope to be not a dream for a particular outcome but as a trusting openness of possibility.
With that foundation, then we can set resolutions about how we want to be in the new year. However our circumstances, whatever our illness, whenever we can, we may nurture ways of being that can give our existence not only more joy, but more meaning.
Stay open for miracles and the unexpected. This is hard, but so worthwhile. In my closet, I have a little sign that says, “Good morning! This is God. I will be handling all your problems today. I will not need your help. So have a good day! I love you!” That reminds me that I can relax and not worry about being too sick to do anything, but most of all I am encouraged to trust. Just relax and trust.
Be kind, especially to yourself. The negative self talk just adds to shame and self-doubt. A lot of what I say to myself is the result of comparing myself to others. I feel I should be able to do this or that. I believe I should have the ability to exercise, and that it’s just not fair that I don’t. Often though, we are overly optimistic about what other people are like and are doing. Suffering comes in all shapes and forms and affects all of us. Unleashing unhelpful narratives in our heads serves nothing and no one. So much pain comes from what we think should happen and from comparisons.
Cultivate joyfulness, not momentary happiness. Create a lasting happiness that is not dependent on circumstances. We don’t have to be grateful for sickness, death, misery or the state of our country. But we can cultivate joy to spite all that. Look for avenues to produce lasting joy everyday. Don’t try to battle-ax your way through your difficulties (you don’t have the energy anyway) but creatively side step around them. Seek ways to make yourself laugh often.
Take advantage of every possibility possible. This requires conquering fear. The fear that a shower will use up what energy you have. The fear of someone saying something stupid or hurtful. The fear that you won’t be believed. I’m going to try more, because chances are missed when we don’t even try. And disabling symptoms may arise anyway, so you might as well.
Buried in a rejection of mean behavior is a belief that something is better. When we repudiate unkindness, it’s because we believe in kindness. Righteous boundaries help us to feel secure in our relationships. Of course, everyone makes mistakes. We are human. And forgiveness helps us more than them and is essential, but we can forgive without subjecting ourselves to continued hurt. So when wrongs have been explained and the cruelty continues anyway, then don’t feel guilty for having to draw a line to secure your health and wellbeing. Doing so makes clear that if apologies are sincere and followed by actual change, that whole and real relationships can evolve and grow. We can be open for surprise here too.
The latest Scandinavian trend, after hygge, is lagom. Niki Brantmark, the lifestyle and interior designer of MyScandinavianHome recently published Logam (Not Too Little, Not Too Much). In my Buddhist training, my teacher talked of not too tight, not too loose. Episcopalians talk of the middle way. That means I don’t completely relinquish all my aspirations for what I want to accomplish and do. I’m going to aspire but with flexibility. I’m still doing a food cleanse to try and lose the weight that medicine caused me to gain. I’m still making plans for my business and striving to make some income. I’m still organizing a movie club in my apartment so I can connect in person with my friends. But I also abide the fact that sometimes I just won’t be able to, and I will approach that with patience, kindness and ease.
When you’re sick you don’t have to worry about time management. Time is the one thing you have too much of. Empty days are plenty. Energy is not. So I will be more mindful and systematic about what and on whom I spend my energy. This can be challenging because my energy and ability is not always predictable. When you live with myriad of symptoms A + B does not always = C. But I will be more conscious and check in with myself and with my body to assess carefully and mindfully how much energy I have to expend. This is an endeavor all spoonies know. I want to be better at how I spend my spoons.
These are my goals for how I wish to experience and to be in 2018.
My overarching word for 2018 is open – open to possibility, open to hope, open to fear, open to joy, open to anger, open to nurturing, open to change, open to trust, open to growth. Even if I don’t have the energy to do everything, I aspire to stay open to the belief that everything is going to be okay. Yes, even opening my heart to that surprise.
I also very much wish that you can too as we support and encourage one another.
1 de Botton, Alain. The Consolations of Philosophy. New York: Pantheon Books, 2000, p. 79.
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"Hope, in a truly spiritual sense, is openness for surprise, for that which you can not imagine."