On the 3rd of September I, and three other authors, were invited to be speakers at an SPCA fund raiser. Yes, four introverts were slated to be the entertainment. Yes, I was to speak about a time that I’ve now left to history. During the run up to the event, my mind was blank. I couldn’t think of anything I hadn’t already said, to say. Then one morning, in the shower (where all good ideas emerge), I began to think of all the things I wanted my children to someday know about This Day.* So that’s what I did, letter by letter.
3 September 2015
Today I was asked to give a little talk on why I wrote a book. Instead I’m reading letters I’ve written for you, to read someday, but not today. I’m not ready for you to hear these words, even if I’m speaking them to others. Because I’m not sure you’re ready to understand. Or maybe you are and it’s me that isn’t ready. Either way, you can wait.
As much as I tell people I wrote the book for me, I also wrote it for you. Don’t bother to search for your names in the dedication. They’re not there. I couldn’t forget that my first published book, about an unexpected pregnancy, became an actual experience after I landed an agent.
So then there was you, my son. The first child. Who arrived without invite after a hideous year of good-bye. Good-bye due to old age. Good-bye due to suicide. They kept coming, even after your birth. Such as the day I held the finger of your eight-month-old playmate. A cold, they said. But by the next day he was dead.
Then there were the almost good byes. Near misses. One from depression. Then two. Then you, my second child, my daughter, whose faulty umbilical cord should have killed you during birth. But it didn’t.
Nevertheless, forgive my superstitions. There was no way I was putting your names on a book that opens with a mother writing a letter in the sand to her dead son.
I wrote a book about living life in a world that is far from fair. How not everything in life can be cured or fixed, nonetheless, we must learn to live in that space. Because when times got hard I began to reflect on the women I most admired, including my grandmother. That the single attribute that all these women shared was that they tried. No matter what life tossed at them, even if it killed them, they tried to keep going. This was despite, I am sure, going through periods where they weren’t sure what they were living for.
Remember, my children, life isn’t a contest. All I ask is, you try.
You don’t remember me as I knew me up to the age of thirty-three. I was strong, sporty, never used prams, instead I carried both of you in slings. I even managed to teach basketball classes with one of you on my back. All of which happened before the time you began to store your memories, for now and the future nows.
The me you know, and will remember, is a mother who can’t always use a knife. Who isn’t supposed to lift heavy things. Who sometimes can’t drive a measly 55ks. She spends a lot of time on the computer. She is always sore. Sometimes she can dance, other days not. She’s supposed to exercise a lot, but also rest-rest-rest, take daily medication, wear funny tape and braces, all of which change depending on the day. But at least we now know I’ll be okay. It doesn’t kill you. That’s something, at least.
There is a rumoured poem by Charles Bukowski containing the line Find what you love and let it kill you. James Rhodes, a pianist, wrote an article of the same name for The Guardian. In it, he discusses rediscovering his love for the piano, even though the endless repetition from practising can be hard. Boring. Means dropping other activities he liked all for the one thing he loved to do more than any other.
The world is an interesting place. There is so much to do and explore. But sometimes you are forced to make choices. Sometimes you can’t do it all. James chose the piano. I picked the book. A book I wasn’t sure I would physically be able to finish. Things were still unknown during that time. So on the first day of writing I wrote the beginning and the end. Then, in a way, I could say it was done.
This is called hedging your bets.
I wrote a book about how your spouse, your partner, can never be your everything. That society often expects too much from lay people – our friends and families – when it comes to dealing with hardship and poor health, including depression. That it is wrong to believe that your spouse has some magic ability to fix or support all that life tosses your way. They have their own demons to battle. Society will try to isolate you, in grief, in hardship, in illness. But often the answer is outside of your relationship. Even then, the answers might not be a fix. They may only be how to make do.
Making do is better than nothing at all.
I wrote a sad book where people still laugh and make jokes. Because that’s what real life is like. You can be hurting, things can go terribly wrong, yet still find something inside that moment, funny. Even during a funeral. Don’t apologise for this.
People used to tell me, after I had you, to treasure every moment. The truth is, parenting is hard. Children sometimes behave terribly. Not every moment is wonderful. And that is exactly how life works, too. The key is, no matter how awful life has become, is to be able to laugh. I read in an article by Glennon Melton, ‘Don’t Carpe Diem,’ that rather than to feel regret for not always being happy, to simply be satisfied with Kairos. Kairos, the Greeks called this the time of the gods, those moments that take you out of the everyday, full of chores and responsibility, the hardship and the pains. Life is not easy. But you’re okay, so long as you can still see these moments, that raise us up from the rubbish, as Kairos. If you ever reach a point where you can longer can see these times, when the laughter is totally absent, please, get help.
I wrote a book where women talk to each other, and not always about men or children. These women have ideas, impulses and random thoughts about a variety of topics. Because that is what women do. I was tired of books that didn’t show this.
When I began the book, they didn’t actually know what was wrong with me. There I was, thirty-three, losing the ability to use my hands and everything hurt. Experts kept making suggestions, but things only got worse. At that time, we didn’t understand that Hypermobility Syndrome paired with something like Fibromyalgia, if left untreated, can create havoc on the autonomic nervous response, mimicking other chronic disorders that are very scary.
During this time of fear, I was losing all that I used to do: surfing, knitting, cooking, piano, gardening. My hands were working less and less. And nothing I’d written up to that point was good enough. I wanted to say, at least once, that I’d written something beautiful, even if it was a bit sad. To leave it for you. So I decided I would. Even if though it hurt. Even if nobody published it. At least I could print a few copies to show you, my children, that there was a me that could do things before I no longer could.
That’s why it is a short book.
I wasn’t sure I had much time.
I really wanted to make sure it was done.
Then things turned out better than I thought. Not great. But okay. And during this, somebody agreed to publish my little manuscript.
There are more than two copies around. Honest.
While it is trendy to claim that everything can be solved with positivity, this isn’t actually true. Sometimes, no matter which way you turn a situation around, it still stinks. It’s still awful. You still wish it didn’t happen. It’s okay to vent. To cry. To say you’re angry and upset. But in the end, you need to keep going. But keep going doesn’t always mean try harder. It sometimes means try different.
While writing the book the doctors discovered that I was okay. Well, not really. There is no cure for HMS, a chronic degenerative condition, or Fibromyalgia. But neither condition is as bad as some they were testing for. You can live a long life with both. And that while that life will never be easy, most people’s lives are not. As Marian Keyes put it, ‘I’ve realised I’m not special.’ Everyone lives with challenges, some are visible, others are not.
However, I may have passed it on to you. Actually, we already know one of you has it. But you have your own choices. We know more about how to live with it. Your experience might not be so bad. In fact, right now, you both seem to be living well. Active, but not too much. Even so, should it start to snowball – the doctors still don’t know why it does for some and not for others – at least we now know what to do. For me, it means proper meds, tape, exercises and braces. For you? We shall see. Science is still exploring.
Now that I know I can still write, this book is hopefully not the last. I’m working on another. I still have to write slowly, but not as slow as before. I’m stronger. I don’t require as much rest.
Yet, I’m still trying to write for you. And me. But this time, it is two stories: the one that I planned and another that consists of the main character you demanded. This book is a massive mess.
You see, writing This Day was the most physically taxing thing I ever wrote. But the voice of the main character was easy. I walked with her. Understood her. Could hear her, clearly.
This mess is physically easier, but the voices are loud and keep talking over each other. It is the most complicated storyline I’ve ever tried to create. Even so, if that book is ever published, I’ll dedicate it to you.
Originally posted on my Books Live Blog