No Access

As I waited a bit anxiously, wondering if the coming squall would pass us by at the May Erlewine concert, I suddenly realized that I belong to no place. Even here among the white pines, cedars, and sugar maples. Such existential moments usually would not unnerve me. Here, in northern Michigan, in Leelanau County, the place where I grew up and love so much, it was unsettling. If I don’t belong to this place, where do I belong?

Sweet scene at Fountain Point, Lake Leelanau, where May Erlewine performed. Luckily we only had a few rain drops!

There is no mystery about why I feel this way. Having myalgic encephalomyelitis (ME/CFS) does not allow one to fully belong to this world. It feels a bit like diving into Lake Michigan (not that I can safely do this anymore). You are there, but you can’t quite see, can’t quite hear. With ME/CFS, life is muffled, coming in and out of different levels of ability and consciousness. Living life at 20-30% of capacity means you often are not well enough to connect with the people and places that matter most. This leads to a feeling of not belonging.

I can no longer access most of my old favorite places here or anywhere. Then there are all of the new places I have yet to explore. Yesterday evening, while out on a short drive, I turned into a natural area new to me, knowing that my journey would end at the parking lot. Still, I was hopeful that I would somehow be able to take in more than a trail leading away into a wall of forest.

This has happened over and over again since becoming disabled. Once an avid backpacker, it is a bitter pill for me to no longer have access natural areas like I once did. I am always disappointed and angry at the accommodations on offer, even in a place like Sleeping Bear National Lakeshore. The fact remains that there is no board walk that will take me to see the habitats and species that form the backbone of my love for this place.

Not being able to access my favorite places means that I feel disconnected from nature. Before falling ill, I studied the natural world, both as a profession and a hobby. Plant and animal species are like old familiar friends and I always took delight in meeting new ones. As a naturalist, I tended see the world differently than most. Rather than just a bunch of green stuff, I see exciting patterns and processes. Not anymore.

So the question becomes: how can I make this place mine now, as I currently am? What new traditions will allow me to integrate my previous experience with my new reality?

I have always had it in my mind that I will return to Michigan someday, and as I get older this desire only grows. But fantasy affords some safety and emotional distance, which might falsely allow me to conclude that moving here is a good idea. In my mind, it goes something like this: I have a life that is filled with peace, natural beauty, and my tribe. Michigan has all three of these things.

My dream is to have a small house near Lake Michigan, dogs, and a little vegetable patch. In this dream, the house is comfortable, filled with the few things that truly matter to me, is clean and in a beautiful surrounding. There is a 1000-piece jigsaw on the table, various unfinished projects, and piles of books. It is a modest dream, but one in which my life and my values are well aligned.

My reality as a chronically-ill person is likely to be very different.

I long for equanimity in my life, but perhaps I have gone about finding it in the wrong way. I have found equanimity here, in Michigan, and with certain people. It is usually something external like this that gives me this feeling. If I can have that feeling here, or with another person, it stands to reason that this feeling is something that I carry with me wherever I go and regardless of who I am with. It isn’t that easy, though, and I rarely feel equanimity with this illness.

Having ME/CFS is one big exercise in fitting your life into small spaces and finding the joy therein. I am always up for a good challenge and tapping into equanimity has seemed like the ultimate one. Leaning into to hardship is a productive, if not entirely comfortable, way to learn about myself and allows me to find more acceptance of my situation. Finding equanimity seems like yet another extension of feeling around the dark box that is ME/CFS for the one place where you can find air.

I know I am up for the task of finding equanimity within, but sometimes I wonder if it has to be this hard. What if we could be where we want to be, doing what we want to be doing, with the people we want to do it with? Maybe that is the real challenge – to live life so authentically that you don’t have to search high and low inside to find peace. The Buddhist in me questions this wisdom, as ultimately we are the ones – not external forces – that determine what peace we will have in this life.

Lake Michigan sunset over North Manitou Island.

6 thoughts on “No Access

  1. Blessed that I got to spend some (way to brief!!) moments with you in our lovely heart home by Lake Michigan 🙂 I believe there is a path to healing for you… I hope you do, too!!!!!


  2. Thank you, Caroline, for your honest update – as always written in such a beautiful reflective way. I wish your visit back home, as bitter-sweet as it seems to be, was easier to fold back into your life now. “Home” is a difficult thing, place, feeling, and notion – and bringing it back into ourselves is the right thing to try to do — as difficult as it is to do, especially in your situation. Thank you for introducing me to the music and beautiful voice of May Erlewine! I would love to see you in the fall — will be in touch. Greetings and peace from Southern France -misha


  3. My dear, sweet friend, I’m reading your post 2-weeks after your wrote it. I love you and honor your journey in life and in a serious chronic illness. I feel terrible that I let any time be spent with you in Michigan where I did not share with you anazing places where you have access. I’ve been walking in a few particularly beautiful spots that I know you WILL love, next time you are here. Your illness has severely altered your life and yet it has not taken away all options for you to experience what you love so much. I’m creating a list of places to visit next round. Keep your vision for being here in Michigan alive and know I am here to share it with you. There will be beaches, forests, meadows, streams and more. The only question is when?
    I can’t wait.


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