3 Things I've Learned From Looking Back Instead of Forward With Chronic Illness

Chronic illness means I have different benchmarks for accomplishments in my life. So, I don’t do the math in the same way I used to. One thing that is different is I don’t make resolutions in the new year. Rather, I look back at the year that has passed and think about what I’ve learned, take stock of the ways in which I’ve grown and changed and notice the things I’ve come to see differently. Some items on the list are related to illness (or influenced by it), some aren’t; some are just the process of growing older and, hopefully, wiser.

1. My business.  

I am not, in fact, talking about some learning related to earning. I am talking about business in the sense of “mind your own.” In “The Work,” written by Byron Katie, she says there are only three kinds of business: yours, mine and God’s. She defines God very broadly — essentially any business that is not yours or mine, is God’s. It is so easy to get confused about what is mine and what isn’t mine, so easy to get wound around problems or plans and start ceding mental real estate to details that just aren’t mine. And yet, when I stop and remember whose business it is, when I distill it to this simple property, I instantly feel relief.

I had a close friend stop being my friend this year. Without explanation, without preamble, argument or discussion, she exited my life and told me she wouldn’t be returning. I mean, ouch. Losing her in my life has been incredibly painful. It has lit up my worthiness-wounds and has given me no shortage of time to wonder what I did to feel disposable, and get all twisted around the why of it. But no amount of wondering will actually lead me to an answer. She has the answer. Anything I’m doing is just creating a story and then buying into my own invented narrative. Although it feels altogether personal (which is why I’m using this example), it isn’t. Whatever happened, happened to and for her. While I’m quite impacted by it and fascinated with it, it is, simply put, not my business. It is her business and maybe God’s, but it isn’t mine. Whew! So tough. It is terribly painful, and I can acknowledge the hurt and loss without making what happened my business. Until or unless she reads me in on what caused her to bail on our friendship, I can’t know. And it is not my business. To learn this ultimately brings me less struggle.

2. Care. 

The next thing I learned is related to the pain referenced in the previous paragraph. Wouldn’t it be great to just build up callouses and not feel the pain of these setbacks in life? What if I just didn’t care that one of my best friends evicted me from her life, wouldn’t that be preferable? I mean, yeah, that does sound nicer than the yawning ache of her absence. We are all looking for ways to short-circuit our pain.

But trust me when I tell you, caring less is not the answer. 

When we hot-wire our hearts so we don’t feel the heartbreak, we are also cutting ourselves off from love and pleasure; that is one of the sticky-wickets of being human. I must allow myself to care about the difficult and painful things so I can care about the wonderful and joyful things. It sometimes feels good to put up a front like, “I don’t give a shit,” but ultimately, that front only puts distance between me and real feeling. It takes the lows in life to help give definition to the highs. To pretend or to try to not care about the things that hurt me is not the answer. I must feel my way through, making myself available to the whole range of my emotional experiences.

3. Ready.

Without telling you any spoilers, I can tell you in the newest “Star Wars” movie, there is a moment when Poe is asked to step into a leadership role and says something like, “I don’t know how to do this …  I’m not ready.” To which his wise promoters respond, “Neither were we,” and, “Who is ever ready?” It got me thinking about this journey with chronic illness. No one dreams of this as their future. As a child, I didn’t think, “I’d like a series of progressive and potentially life-threatening illnesses to interrupt me at my prime, derail the plans I had for myself and just generally make everything more difficult.”

No, and I’m guessing none of you did either. No one is “ready” for this life no matter how you grew up. And yet, I’ve now been at this for a decade. I’ve been learning about myself and my body. I’ve assembled an incredible team, from my friends who have hung in, to my doctors I scoured long and hard to get, to my wife who has sacrificed so much to be by my side. I’ve learned how to advocate for my needs and figured out some things about what it means to really love and befriend myself. I may not want to be good at this, but I’m as ready as I’m ever going to be. If the options are to shy away from this and pretend it isn’t happening or step into the challenge, I choose ready.

I choose to walk boldly into this future. A future that looks very different than I imagined, but can still be meaningful, joyful and vibrant.

There is a lot of loss and grief accompanied with the life of chronic illness, and making room in my life to acknowledge that is a daily practice. Riding shotgun with that practice is gratitude. It’s easy to see the difficult, the hard, the painful. When I make time each day to count my blessings, I focus on and expand the things in my life that are going well. Five years ago, because of my illnesses, I was having difficulty swallowing. Two years ago, I was on oxygen full-time. Those things aren’t true today. That gives me a lot to be thankful for. Gratitude isn’t about wiping out or ignoring the burdens or hardships. For me, it’s about remembering not to let my attention get stuck on the hardships; to become myopic. In a life so defined by illness, there are still many things I have to be thankful for, from the roof over my head to the love in my life. As we finish out one year and head into the next, it’s nice to take stock of what I’ve learned and the things I’ve been blessed with. I hope you can count the blessings in your life and spend time with the people who count.

You can follow my journey on Annette Leonard.