Quotidian

Dear Children

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

Dear Children,
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.

 

Dear Children,
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.

 

Dear Children,

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.

 

Dear Children,
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.

 

Dear Children,

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.

 

Dear Children,
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.

 

Dear Children,

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.

 

Dear Children,

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.

 

Dear Children,

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.

 

Dear Children,

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.

 

Dear Children,
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.

 

Dear Children,

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.

 

Dear Children,

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.

Promise.

* This Day currently on sale (now – 30th September)  for R100 on the Modjaji website.

Originally posted on my Books Live Blog

On Black Dog Arriving

Originally published on Books Live

Black Dog Arriving

 

On paper my life has been through a bit, in the last three months. 2014 ended with an accident. 2015 began with a death. Another member of the family is gravely ill. Tucked around the loss and worry have been the more everyday life-hitches: Eskom load shedding, Telkom incompetence, a burst water pipe (again, and again, and again), an employee breaking a leg, a minor operation (me), a stomach bug (child)… The physio keeps strapping me up and sending me back out there, like a coach during a game. So it goes, Kurt Vonnegut would say.

The morning after the death, husband and I sat side-by-side, bleary eyed and stunned while a waitress brought our drinks. We were at a rest stop outside Swellendam, facing their picturesque mountains. In an adjoining field, our dog, Orwell, joyfully ran, delighted to be travelling with his family. His bliss was so great you could practically hear Born Free playing as he romped. Smiles crept across our weary faces. I said to Husband, ‘Really glad we brought the dog.’

Then we returned from the wake and Orwell fell into his post-holiday-with-other-dogs-slump. So it goes…

Between the accident and the wake a friend dropped by. After saying what is said in these times, the conversation wandered into the more everyday. He mentioned he had started volunteering at the SPCA. He regaled us with his humorous encounters with dogs that would never suit our family. Then he paused. ‘I probably shouldn’t tell you this…’ But he did. A blind Labrador puppy. ‘The thing is,’ he said, ‘You’d never know at first that she’s blind.’

And my ears perked up. Labrador is the right size to be a friend to Orwell. Blind dog might not try to usurp our un-Alpha-but-still-like-being-in-charge dog. And he really needs a friend because every time we return from holiday that involves other dogs, he goes into a slump. Plus a blind dog would probably be less likely to catch a chicken while we train her not-to-chase-the-hens. But this was not the time to get a second dog. We were still travelling back and forth on a moment’s notice, hoping death would be held at bay. She’ll be adopted by the time life has calmed.

She was still there.    

I could tell you all the reasons people told me not to get another dog. The list is long and their objections are sound. I could tell you all the reasons people say you should never adopt a blind dog, too, as many were eager to share their thoughts. But there are times when decisions don’t make sense on paper. I wanted a dog. I can take care of a dog. As I told my father during a recent telephone conversation, ‘Everyone keeps telling me not to over do it, until they want something, like dinner and laundry to be done. If life is going to be this busy and this chaotic, I’d like for some of this crazy to be for good reasons.’

Because the truth of the matter is, when your health limits your physical capabilities the greater world can forget about your need to participate in fun. Unintentionally, these caring souls try to make my life even smaller than it needs to be. You could just watch. Be careful! Are you sure you should? Oh, please take the kids to school and activities. You want to what? You might get hurt! Is dinner ready? Have you seen my shirt?

Hey, if I’m going to hurt, it would be nice to be hurting because I love dogs, and not because of the damn dishes. And let me be the first to say, my most debilitating injuries I’ve suffered in the last four years were all acquired while doing not-fun-things! Like saving a child from poor traffic choices. Necessary, but not fun.

Almost two weeks ago I went to the SPCA and asked to see their kennels. I told them I was cautiously interested in a second dog. I did not, however, inquire about a specific one. I stood there and examined them all, and there was one dog – more than any other – that tracked me as I walked around. This puppy was alert, energetic and showed promise of intelligence and was sweet as any dog lover could want. So then I brought Orwell to see what he thought. Then the kids. And then a few days after that, the black dog arrived.

 

Her name is Ziva. She’d like you to know she gets around fine, all on her own, thank you very much. That how a dog copes with a disability depends on the dog. Her presence has yanked Orwell out of his mope-slump and is keeping me from losing perspective in this current circus called 2015. Playing with my dogs is the ultimate stress relief.

And every day since I brought her home I’ve thought of Ella, from This Day. How throwing your energy into devoted, loyal companions keeps the beast at bay.  If our characters have future lives, may Ella be blessed with a dog – or two.

On 37

Today I am 37, or so my husband says. Last week I started to believe I was turning 38, which led Husband to inquire what exactly were in those drugs the doctor had put me on to deal with the most recent injury.

Been a funny year, good things and terrible things. The book being published was – undeniably – a good thing. Yesterday a piece I'd written for The Spark was published on Books Live. The writer is required to explain what sparked  the idea of the novel. Yesterday, I sat there reading it and thought, How far I've come.

I'm no longer the person who wrote This Day. It isn't that I'm better. (I'm writing this wearing two wrist braces, my neck is taped to prevent my jaw from dislocating after an incident and there is even more tape on my shoulders and back. The back brace is sitting at my feet – ever ready - should I have to put it back on, which I've had to do from time to time over the last two weeks.) The difference is I'm armed with knowledge on how to cope. The difference is that I'm no longer flaying in the deep.  The difference is that I no longer have the fear: I know what it is and it can't kill me.

I'm also better. – You just said you're not better. – I know. I am, yet not. The Fibromyalgia, managed with meds and a slight change in diet – is no longer causing parts of my body to simply not work, while the burn races along unchecked. Little breakouts occur and I now have tricks, which allow me to stamp it out before it runs rampant. Hypermobility Syndrome has also been helped in numerous ways. We've sorted out nutritional deficiencies (my body doesn't seem to believe making vitamin D is its job, nor is it interested in absorbing B vits from food). Exercises – based on where I am at on that day -  improves stability and keeps me strong-ish (I can now cut my food and turn the car on without feeling like a hero). I now know which braces provide support or prevent over extension of joints, without over restricting me and causing knock on problems. My nearly magical tape eases muscle spasms while, often, doing what a brace can more comfortably with less bulk.

The most useful tool, however, has been learning to read pain. The most serious signal doesn't even hurt – a tightness in the body if left ignored, eventually results in serious injury. I had one very bad 'whoops', and now know if I ever feel that again it means 'Call the physiso, now!' at we nip it in the bud before it becomes a major incident. Some pain, however, I simply put in its place and work through. Other bits tell my diet has gotten out of whack. Another – rest more. Another – rested too much. Some pain signals injury. Some is simply the body complaining that it was built (mostly) for 33 years of living-the-life-I-had, and I've gone past it. Overuse: too much, too much, too much. Should have led a gentler life. Ah, hindsight, you always arrive too late.

Yet.

Now is better. Life is no longer spiralling ever downwards. It is a series of ups and downs, much like owning a jalopy. My 'front bumper' might become too loose, so we work on fixing that; meanwhile a tire goes flat, so we patch it up, only to have the rear bumper fall off, so we strap that on, then my rear viewer mirror cracks. I won't claim to be a cheery person. But I am, as my physio wished, now living my life. It is a good place to be. Here is to 37 years: some jalopies don't quit; they simply gather a bit of rust.

On Twice

Thing 1: So did you and daddy have a divorce? 

Me: No.

Thing 1: Then how do you have two weddings?

Me:  It's a long story. 

Thing 1: I'll bet.

14 years since the legal wedding, after a UK paper pusher advised us it would be best to get married now rather than later if we wanted to avoid a lot of hassel and paper work.

6 years

I have now lived in this country for six consecutive years. At last I am able:

1. To be an official resident of the country. (Before then, I legally lived here, which is different. Apparently.)
2. To accept work-for-pay without having to obtain permission from my husband or the government.
3. To buy a car or a home, should I have such desire or finances.
4. To have a South African Driver's Licence.
5. To apply for a South African ID number (which takes six to nine months to process).
6. To have my very own cheque account.

As a resident of South Africa:

1. My husband no longer could have me deported by deciding he no longer wishes me to live in his home.
2. I no longer have to worry about somebody saying I 'volunteered' rather than 'helped.' (The wording matters.)
3. The Government cannot deport me for joining the PTA or school governing body.
4. I can travel freely between countries without risking being declared 'undesirable' by immigration.

All of which is progress, me thinks.

On 13 years

 

On Permanent Residency

Filed in 2009. Recieved June 2014.
Take it Dolly. . .

 

 

On swearing

This Sunday a rather large South African newspaper published an excerpt from something I wrote.

Which was fun.

Except I was misquoted.

Which was hilarious.

To read more about this comedy of errors, click to the BooksLive post My Family Has Never Been Prouder.

On Hypermobilty Syndrome, fibromyalgia and an over active autonomic nervous system response

I have Hypermobilty Syndrome, fibromyalgia and an over active autonomic nervous system response (it is wonky).  Along with that, I have permanent damage in the right shoulder and wrist. Yes, HMS was always lurking in the background casuing little issues here and there since birth. But none of this was a very big deal until three years ago. Now that it is a big deal, people have questions.

Problem is, none of these conditions are easy to explain in a sound bite. Nor, from outward appearances, do they seem ‘logical.’ For example one day you may spot me wearing two knee braces, my everyday wrist braces, a pair of elbow braces and be covered in bright blue tape. Two weeks later you may spot me and I’ll only be wearing the wrist braces. Not a sham. I’m not cured. (There isn't one. To any of it.) It is simply where I am at that day. Nor do I always react ‘logically’ to a situation. For example, somebody can kick me in the shins, and while it won’t be pleasant and I’ll bruise, I will be fine. However, squeeze the wrong spot and you’ll trigger my autonomic nervous response and I may throw up or have (as it has done in the past) an arm decide it no longer will work. (Found that very disturbing.)

Nor do I have (thankfully) all the problems HMS has the potential to cause. It is sneaky bugger of a condition that manifests differently in every person – even those who are from the same family.

The purpose of this blog is not to go on and on about my health. However, people are curious, which is fair enough. Some people, due to misunderstanding what I’m trying to explain, often give very poor and undesirable advice. Others, such as the woman who approached me while I was having lunch with a friend, are suffering from other chronic conditions but when spotting my braces and tape want to know: ‘How’s that working for you?’ Because when you live with something for the rest of your life you are always on the look out on ways to live with it better.

However, it does get tiring trying to explain why I am how I am, over and over again. It also gets very annoying when people don’t trust the limits I have put in place:
 
I will not shake hands with you. It isn’t personal. I will let you give me a hug first, before I will allow you to touch my hands. I will never think it is funny, even if I am humouring you, if you keep goading me to ‘shake hands.’ This stands even if you promise to be gentle. I’ll think you are being a bit of an arse.

Yesterday a friend sent me a link. It is a wonderful link. If you are a family member, or a friend that interacts with me, I would be grateful if you would read the link. Because it gives a brief – yet clear - explanation of HMS, fibromyalgia and how these things impact the autonomic nervous system, digestive system and energy levels.

I don’t want pity. Nor is this a request for any. We all have problems. Problems come in a variety of packages and I’m not saying mine are worse than yours or anyone else’s. I’m simply putting this info out there to share. To help clear up misunderstandings while I keep trying to be part of family, friendships and the writing community, rather than sitting on the sidelines and have the world pass by.

On marketing

‘How do you write a literary vampire story?’ Husband said.

Ignoring a book called Dracula (haven’t read) and another called The Historian (have read) I said, ‘I’m not really sure.’

Which was a mostly true statement.

Listening in on the conversation were two children. Both of whom that had decided that my attempts at writing a vampire story that they might be allowed to read when they’re twenty was the coolest thing I’ve ever attempted to write. But then Thing 1 said, ‘I really wish you’d write a story with X in it.’

I laughed.

‘Aw, but I really want you to.’

‘Even if I did, you wouldn’t be allowed to read it.’

‘Until I’m twenty.’ ‘Until you’re twenty – if you’re lucky – and even then it wouldn’t be anything like you imagined it would be. This is me we’re talking about. I write scenes where the main character does nothing more than scramble eggs.’

‘Now that’s the way to market your work,’ Husband said.

- To read the rest of the BooksLive post click On abandoning the comfort zone