Maryanne OHara - Little Matches

For Nick and Dad

for Andrew and Jess and Katie

and for every kind stranger

Little Matches is a book about losing my beloved only child and my search for answers to the hard questions. Where is she? Is she? Is there more to life than this life? Does consciousness survive death? Does my existence have any real purpose? Does anyones?

Its also an exploration of the growth I experienced as parent and friend to a gift of a human being.

And its a meditation on universal truths about loving and losing and needing human connection.

Caitlin was born with a genetic, progressive diseasein her case, cystic fibrosis (CF)and like many children who live with serious illness, she was wiser than her years. As she grew sicker, and particularly as she grew into an adult, she became a kind of sage for those around her. She often joked that if she hadnt had CF, she might have been a shallow sort of person, which was her modest way of pointing out that she didnt think she was particularly special, it was just that having to face your mortality makes you look at life, and the world, with a much broader and deeper perspective.

She was right. People who face trauma, illness, or severe loss often find themselves transformed, and come to question or better understand what life is really for.

During her long wait for a lung transplant, I used a blog, 9LivesNotes.com, to keep loved ones abreast of news. After her passing, I kept it alive and every time I posted somethingan insight of my own, or some of Caitlins old-soul wisdomI would receive what I called the you dont know me letters. You dont know me but, they would begin, and go on to say how helpful it was to read honest, unsentimental reflections on suffering and loss, and on the mysteries that connect us as human beings who find ourselves alive, with questions, on a wild and nurturing planet.

People also found inspiration in my accounts of our strong mother-daughter bond, in how Caitlins wise words and ways became sources of insight and hope, even after her passing. These readers asked for more stories. They urged me to turn the blog into a book.

Even though writing the blog posts had been my salvation, at first I was too catatonic with grief to even think of tackling a book. But nine months after her passing, I realized I was adrift, that I no longer had any kind of rudder. If my writing about Caitlin was going to serve a purpose, then I wanted to do it.

I had to decide how to distill the material of our story into one that could inspire readers to contemplate for themselves what might really matter at the end of our temporary, beautiful lives. Here is what I came up with. I start with a chapter called Knowing, wherein I put myself and my reader right inside the worst of it: the stunning, sudden loss of Caitlin. I call this one-chapter section , I put in some pieces written by or about Caitlin that may be of interest. These are followed by a list of books and resources for those who would like more information on the various topics that I discuss in the book.

In real time, I looked for revelation. I became every human who has ever looked for answers to big life questions inside books and science and in the natural world and inside personal relationships. As the narrator of my own story I moved back and forth through time, much like memory works, and came to focus on a few ideas: that purpose in life is necessary, and probably a prerequisite to joy and contentment; that by acknowledging the inevitability of our mortality, we can actually better enjoy the time we are alive; that we are all connected; and that we all have work to do.

I am not the first person to have lost what was most important to me. Humans lose every day, and lose hard: children, beloveds, sacred homelands, freedoms. Little Matches is for anyone who loses and asks, Now what?

When Caitlin was clinging to life during her final days, she called us to her bedside. She was serious, fierce. Listen, she said, I need ferocious positivity from everyone.

Ferocious positivity isnt a meme or a passed-around quote. Ferocious positivity is here, in her last posted words:

My thoughts these days arent the skate-on-top kind of normal life thoughts. Theyre up and down and trippy and depressiveand we have a lot of laughs. And lots of crying. And weird creative urges. I just want to say thank you for listening to what sometimes must be very emotionally over-the-top sounding writing. And to reassure you I dont take myself too seriously. I do take life seriously though, Ill be honest... because its a seriously wild business.

Life is a seriously wild business. And its all ours, for a little while.

Someone recently referred to Little Matches as a healing garden of words. The metaphor took me by surprise. The speaker had just met me, and he did not know that Caitlin had spent the last two years of her life trying to save a world-renowned hospital healing garden. He did not know that since her passing, I had been trying to think of how I could create a kind of physical, real-life portable healing garden, a place where people might find whatever comfort and inspiration they needed. I wasnt even sure what a physical, real-life portable healing garden would look like. Now I think it might look like Little Matches.

In the middle of our lifes journey, I found myself in a dark wood.

DANTE

Its as horrible as I knew it would be. It is silent, internal hysteria, and it is unbearable.

People say, I cant imagine, and I think, Really? You cant imagine?

Maybe having healthy children protects you from letting your mind go to the darkest places.

One friend says, Im so sorry. I dont know how you can close your eyes at night.

Heres how I do it: I close my eyes. I ask the universe to give me an hour of unconsciousness. Somehow it works.

Im learning to talk to the universe.

I think, I can bear it if I know I will see her again.

I nonstop devour the kinds of books she and I sometimes liked to read and discuss. I call them soul books: We Dont Die; Many Lives, Many Masters; The Light Between Us. These particular books are intelligently written, credible, and they provide some comfort in the moment. Yes, they say, we birth into this life knowing, at a soul level, our lifes plan. Yes, there is more to life than this life.

When I close them, Im a frantic human mother again, sick with doubt and grief.

We are all so present in these two worlds we live inthe old natural world of relationships, of day-to-day existence, combined now with our digital selves, our presence in ten thousand photographs and videosthat the abrupt absence of any one of us, overnight, seems exponentially impossible.

We say what humans have always said, I cant believe I will never see her again. Yet there she is, talking from the small screen in my palm. There she is, existing. Disbelief compounded.

The brain gifts us with that disbelief. At the instant of comprehension, it shuts down, protecting us, I suppose, by feeding us small bits of reality at a time.

The only thing that makes me feel better, makes me feel connected to her, is writing on 9LivesNotes.com, the website I set up just before she was formally listed, on April 24, 2014, for a double lung transplant, the end-of-the-line fix for people with severe cystic fibrosis. We had heard of people who had had to wait up to a yearsometimes even longerbut the transplant team stressed that the call really could come at any time.