10 Things I’ve Learned Since
Chronic Illness Entered My Life at 33

June 20th / 2017
Enlightenment

If I had known on the day I graduated from Vassar that I would have less than 12 years before I got sick with a debilitating illness, I would have made other choices. I had no idea I would spend nearly 2 decades of my life in bed sick with fatigue, weakness and pain – living a very constrained life and perforce a much different reality.

Over those 12 years, I got forced out of one job and fired from another, went to law school and got my first F, waited on lots of tables (at times with Paul Ryan), studied in Italy, bought my first apartment and then my first house, and eventually secured my dream job at PBS. Then, I started studying part-time for my masters in creative writing basically because I was a super over-achiever and bored in the evening. And then there were the love affairs that I barely made time for because I was so focused on my career. I didn’t pursue the most serious one because he didn’t seem to be interested unless I uprooted my life and relocated to the mid-West. I loved my life too much and him too little for that.

In the midst of that at the prime of my life, I got sick. I got mysteriously sick. I received multiple misdiagnoses, and even made a pilgrimage to the Mayo Clinic. I tried everything recommended and then some. It took a while to figure out what I had. My symptoms were ever-changing, with no rhyme or reason, like a hydra. My world went upside down and tossed me around. I confronted the hard fact that there’s a big difference between a treatment and a cure, and it turned out doctors could offer me neither. Weeks stretched to months stretched to years, and more years and more years and more years.

“Pain expands the time,” as Emily Dickinson acutely notes. (#967) I have had expansive time to consider, well, everything.

At the age of 51, looking back, here is what I know now that I wished I knew then, half a lifetime ago ::

1 / Seek Out Truth 

Be keen to know the truth. I don’t mean facts though those are important, now increasingly important, too. Not everything can be looked up on Google. What I mean is emotional truth. I mean the truth that is revealed in stories. Seek out stories that move you and connect you to the deepest part of yourself. As Kafka wrote to a friend, “A book must be the axe for the frozen sea inside us.” (From a letter to Oskar Pollak dated January 27, 1904.) Look for stories that challenge you, break you open and show you truths, your truths. Stories are powerful and can enliven your life, brighten the world and change minds by illuminating truth.

2 / Be Curious

Do not allow your assumptions to blind you. Ask more. Know more. Dig deeper. Always nurture and maintain that confidence to inquire. Be curious about ideas, other people, other cultures, other ways of doing things. Even once you become a “master of the universe” know that the true masters are not over-confident and continue to inquire. The others are just poseurs.

And ask with delight, joy and a lightness. Challenge assumptions, thought and convention – your own and others – with a light touch and tone. You’ll learn a lot from the answers you’ll elicit. Keep asking, “Why?”

 

3 / Expand Your Horizons

Leave your comfort zone because you may not be able to later. Doing so is always hard but trust me, it does not get easier. Move away from home; travel to learn. You’ll discover so much about yourself by contrast. Immerse yourself in another culture, and learn what is pivotal and essential for you. Discover what is truly universal. And I do not just mean abroad; the United States encompasses many cultures, all of which will show you different ways of living a life. So venture to explore.

4 / Find Meaning

So much of life is magical and miraculous and mysterious. Stay open to these aspects of life which are non-linear, non-logical and non-sense. If you have a tendency to shut yourself off to those aspects, do not dismiss them. Do not be one of the “walking dead,” living your life without reflection, without course-correction, without happiness.

Life is not fair and often unpredictable. Much of life will seem like nonsense and stupid. You’ll need meaning beyond the tangible to survive.

Create meaningful rituals in your life to mark passages, achievements, and failures. They connect us to each other, our pasts, and our stories. Seek out and adopt rituals for yourself that speak to your heart.

Find people to listen without judgement and to serve as a refuge for you for when you face great adversity. Because you will. Nurture a web of people you love to support each other. If you ever feel defeated or you can not go on, reach out to them. Nothing is more essential than human connection. That is life’s meaning.

5 / Think of Others

Rabbi Hillel in 100 B.C.E. said in a sermon, “If I am not for myself, who will be for me? If I am only for myself, what am I?” The arrogance of youth is a cliché for a reason. You don’t yet know what you don’t know.

I got hit young and hard and had that youthful arrogance knocked out of me. I learned I was not as self-reliant as I felt. I needed others. And I hated it. My prior selfishness, as natural as it was, did not make my neediness less true. I just wasn’t aware of those needs until I got sick. We are all interdependent.

I recommend you counter that inclination towards self-involvement with a deliberate and assiduous effort to consider others. Consider their experiences, their points of view, their needs. Offer help. You never know when you may need some help yourself.

6 / Allow Yourself to Fail

Be willing to fail. Don’t avoid it. And anyway failure is only failure if you refuse to get up and try again. Failure that does not defeat you and stop you is just experience. Failures will season you. Go ahead and take some time to mourn. Be sad. Grieve. Regroup. Rest. Then use that experience. Learn from the experience. And try again. And again. And again, if necessary.

If you come up against an obstacle, an immovable force or block, figure out a way to nimbly side-step it. Do not try to be a determined skipper of a ship muscling and trying to overcome a bad storm. We can not change the weather. Storms will come. They make wreckage and create havoc. Be instead a creative chef and make the best you can of what’s available. Open the refrigerator door and see what’s available. Make something good out of what IS possible.

And when there is wreckage, know that the mess will not be because you were not strong or smart. Shit storms just happen, beyond our control. Pick up the pieces, be diligent, and keep going as best you can. If your dreams aren’t coming true, keep dreaming. Always dream and strive.

7 / Show Kindness

Remember to always be kind. Do not judge others. Ask questions – what is going on? What does it feel like? What can I do? Ask if you can help, and do not assume you know what to do. Ask because you may learn something that did not occur to you. It’s always worthwhile to ask how you can be kind.

Also know sometimes when nothing can be done, that’s okay too. Silent companionship can be just as powerful as a solace to the unsolvable. Be a witness. Let the other know they are seen. That their reality and truth are seen. That their suffering is seen. That alone can ameliorate a lot.

Know and remember too that pain is invisible. That when one is hurt, withdrawal is a natural protection. Remember not to be dismissive or disparaging of those necessary protections. Everyone is doing the best they can to survive as best as their strength and awareness allows.

Be kind to yourself too. Don’t forget that. If you don’t know how to be kind to yourself, your kindness to others will not be as effective. Practice kindness at home and in your own thoughts towards yourself.

8 / Face Fear

Do not let fear stop you from doing now what you want. Do not postpone what you want to do until later. If you want it, get it. If you want to experience it, do it. If you want love, risk it. Drink life with thirst. It may not work out but you’ll survive.

My biggest regret is that I never married and never had kids. That pains me still, with every breath. I did not know my health and time would be stolen from me. I did not know marriage and motherhood would be stolen from me. So do not allow fear to paralyze you. Everything is figure-out-able. You will figure it out if things do not work, so do not wait.

And forgive. Often. Anger and resentment is a poison you drink yourself; the person who wronged you does not care as much as you do. A regular meditation practice changes your brain and will help you forgive more and fear less. And meditation helps you to be more resilient and happy too.

9 / Engage the World

Do silly fun things for no purpose other than delight. Don’t forget how to play. Be willing to try new things and new ways of doing things. Try food you never ate as a child. Or food you did eat but hated, because tastes change.

See plays and go to museums. Art matters. Learn the history of art and you’ll learn the history of the world. Explore the unusual. Engage with those unlike you and with ideas that are repulsive to you. Read lots of books and also poetry. Nothing is more magical than a surprising turn of phrase that makes you see something new and makes you feel less alone.

Do not postpone pleasure. Do not only reward successes. Comfort yourself when you fail. Experiment and explore to promote the creativity that breeds innovation. Take that less-travelled path. Look for parallels and insights within your expanded world view. Push and propel the status quo to a new and a better and a fairer and a kinder world. Innovate.

10 / Trust Yourself

Do not wait for old age to credit your ideas, your experience, your thinking. Intuition is invaluable. Allow your instinct to bubble up by creating space and times of silence. Do not always busy yourself with busyness to avoid the noise of your thoughts. Your thoughts and feelings and reactions are valid and valuable. Listen to them. Listen to yourself.

Do not be afraid of what you know and what you can do. Trust trying. Trust optimism. Trust progress. Trust truth. Trust faith. Trust stories. Trust love. But most of all trust yourself.


I’d wanted to post this essay earlier in June, but my symptoms acted up and prevented that. I should have started earlier.

Overall, that’s my advice: start early. Want to be married? Start early. Want to run for office? Start early. Want to be a parent? Start early. Want to move and live elsewhere? Start early. Want to write a book? Start early.

With delight and and courage and adventure, go. Go to your destiny. Do not take your time for granted. Or your health. Start early. Start right now. And congratulations!

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Pain — expands the Time — Ages coil within The minute Circumference Of a single Brain — Pain contracts — the Time — Occupied with Shot Gamuts of Eternities Are as they were not —

Emily Dickinson
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