warm story about a woman in hospice at the end of her life, waiting for her friend, Harold, to arrive (and, of course, also waiting to die). This is the companion novel to another excellent book, The Unlikely Pilgrimage of Harold Fry, which I also highly recommend (reviews of both books at the links - no spoilers!).
In the novel, Queenie writes while she waits, and her observations are often so insightful and beautiful that I filled several pages in my Quote Journal with them. Given Queenie's situation in hospice, her insights are almost always relevant to those of us living with chronic illness. I could easily write a post too long for you to read, but I will try to choose just a few of my favorites that feel extra-significant for us.
"You don't get to a place by constantly moving, even if your journey is only one of sitting still and waiting. Every once in a while, you have to stop in your tracks and admire the view, a small cloud and a tree outside your window. You have to see what you did not see before. And then you have to sleep."
I loved this one, and it's a point of view I often write about here on the blog. Just because we are sick - even if we are homebound or bedridden - doesn't mean we have to miss out on what is all around us. Look out your window and watch the changing seasons, the clouds moving across the sky, and listen to the birds. Read wonderful books, watch riveting TV shows, enjoy uplifting movies that make you laugh or cry tears of joy. Look online at photos of beautiful artwork, listen to music that lifts your spirits, read poetry that moves you. There is plenty of joy to be had in life, even if you are currently stuck in one place, feeling in limbo.
"The sky and the sun are always there. It's the clouds that come and go. Stop holding onto yourself, and look at the world around you. ...You're upset. You're frightened. So what can you do? You can't run anymore. Those days are over. You can't make the problem beautiful by dancing. You can't even prune it. Those days are over, too. So, the only thing left for you to do now is to stop trying to fix the problem.
...Don't try to see ahead to the nice bits. Don't try to see ahead to the end. Stay with the present, even if it's not so good. And consider how far you've already come."
This passage also touched me. I think it is easy with these illnesses to fall into the trap of just waiting - for things to get better, for things to change. I know I did in the early years. But your life is still here, right in front of you, even if it is now a much more limited life. It is easy to regret the past or look forward to the future but more challenging (though also far more rewarding) to just live in the present.
"All journeys have secret destinations of which the traveler is unaware."
- Martin Buber, The Legend of Baal-Shem
This quote was at the start of the novel, and it immediately struck a chord with me. So many positive things have resulted from this unexpected journey of chronic illness (14 years and counting) - things that I never could have foreseen. With three of the four of us sick at home together for many years, our family became very close. We spent a lot of time together and relied on each other for enjoyment, as well as support and care. Now that our sons are both young adults, those bonds that formed during our worst years are still strong.
Just this week, we got together with four other families in our local area - the original members of the local support group I started six years ago. Yes, we still talked about medical issues and traded doctor recommendations and treatment advice over dinner, but these people have become some of our closest friends now. We share an unusual bond - something that no one else can really understand. When we get together, even if we're just talking about trivial things, we always know that the others "get it" without us having to explain. You can refer to needing to lie down in a public place or having to stay home from school or any other things that are a normal part of our lives and see smiling faces and nodding heads instead of looks of pity. We can even laugh together over the horror stories - the clueless doctors or passing out suddenly. They're our people. And they are wonderful, caring, fun people that we never would have met without this illness.
The same goes for all of the people we've met online (yes, I'm talking to YOU!). Helping others has always been important to me (I even chose a career where I felt like I was improving the world), and our experiences with this illness have allowed us to reach out and help hundreds of other people, all over the world. I never would have dreamed of any of this before I got sick, but now it feels like being able to help others makes our own suffering more worthwhile.
So, yes, this journey has brought with it many destinations that I never expected. Of course, if I had a choice, I would prefer that my sons and I had never gotten sick, but this journey has taken us to some pretty amazing places that have enriched our lives in unexpected ways.
Have you read either of these novels? How do you remind yourself to live in the present and enjoy this moment? What unexpected destinations has this chronic illness journey brought you so far?
Please share your experiences in the Comments section - and stop today to remind yourself to live in the moment and notice what is around you!