December 8, 2012 | A Little Off The Top: James

Today I got a haircut, I think it's the finest I've ever had. Here's to you B.

I'll try not to bore you with my musings on life, but perhaps I can share a short insight. There seem to be a million theologies, philosophies, and ideologies for where we come from, what we're doing here, and where we'll end up. Whether we meet in the sweet by and by, are reincarnated through transforming energy, or become Gods of our own device, there seems to be proselytizers for any who will have them. Does it matter which one we choose? Not to me. However, just as I choose not to window shop for afterlives, I also have no interest in condemning others' beliefs. It makes little difference to me whether my neighbors attend the Native American Church, or the tabernacle. That is, as long as they possess a sense of dignity and loving respect for the world around them. While I do not believe in atheists, I find this to be a fitting time to share my personal observations as an agnostic.

Bethany's condition comes as a grave indicator to me of the incredible beauty in the world. I suppose in times like these it would be simple enough to shake my fists and cry into the heavens, God Damn you! Perhaps I could wallow in despair, break my knuckles in anger, or drown myself in ecstasy to escape the absurdity of such a situation. I suppose it's also a fitting time for a 'come to Jesus moment' as well, bowing lowly and begging forgiveness, asking that my transgressions be relieved, and asking to be taken back into faithful service. Cliches come easy in times like these, “It's so unfair” or “how could this happen to such a wonderful person?” Yet I find little reward in these circles, and refuse to stagnate in bitterness. I cannot be afraid, and I cannot retreat. It makes little sense to do so, and although I can't quite find the logic in all of this yet, I'll keep trying.

One line of reasoning does occur to me in these sifting hours. Suppose we take the most cold approach to this entire conundrum, and view life as nothing but straightforward. Say for argument's sake, we take away the archangels, sacred cows, and origin stories. Let's assume for just a moment that there is nothing after we die, no one cares what sins we commit, and that our inclinations to hang tooth and nail to every scrap of life are simply genetic programmings passed from millions upon millions of years of organisms with a will to live outcompeting their more complacent counterparts. Remove the symbolism, remove the glass panes, and just view this thing in the moment. Sure brain cancer changes some of our plans. Of course I don't like to think about the labyrinth of possibilities. But what's really happening? Here. Now. Simple. I'm in love. I've found the person who makes the most sense to me in the entire world, and she's alive. We're alive, right now. Even more so, there are things to celebrate every single day. And I don't mean in a stale, glass half full kind of way. I mean really celebrate.

Today started with Bethany vomiting her breakfast in her lap, sitting cross-legged on the bed. She was not smiling, nor was she happy to take pills, sit up, eat, sleep, talk, or do much of anything else. Not a great start, but it left a hell of a lot of room for improvement. We thought we might travel back to Moscow today. That was a bit presumptuous. Instead we extended our stay and focused on healing. We cleaned Bethany, the bed, the clothes, and the dishes. Then we focused on tidying the room, organizing her personal pharmacy, and settling into some simple goals and priorities for the day. A few hours later, with another attempt at medication and food, Bethany once again heaved our efforts into the toilet. That's a start right there. It may seem simple, but having someone vomit into the bowl is a lot nicer than on herself. Furthermore, we had a place to start. With patience and love, we steadily made it through the day finishing Bethany's pill regiment, holding down food, and getting some good sleep. We also were able to start exercising, making multiple trips scooting up and down the flights of stairs. To top things off we were able to start carrying conversation, and smiling once again. I played secretary while she napped, filing through the incredible lengths of loving support that people all over the entire world send this miracle of a woman. And lastly, we laughed. All of us, together, in pure joy and overwhelming love. Those were all moments worthy of celebration.

When you watch the other half of your inner being dramatically shift into an opiate zombie, paralyzed with pain and drowsiness, bedridden and fragile, a part of you comes alive that you didn't realize existed before. Whether it's a soul, a heart, synapses firing in the right spot, or a natural inclination to fend for your family, this thing inside of you shudders in breathtaking awe and compassion for the beauty before you. The tough, hungry little girl with a swollen face and scars running a zigzagged railroad across her shaved head, suddenly becomes more beautiful than any starlet to grace a magazine cover ever dared to be. And when she laughs, you want to cry, those salty tears that come when you feel Atlas' burden beginning to lift. I'd say that's worth celebrating. I'd say staring into the mirror as the barber gives you your solidarity cut, and the man in the neighboring chair covers your bill when he overhears the motivation for the haircut, that's worth celebrating.

If for no other reason, is not the simple beauty and mystery of every day compelling enough to live for? Regardless of whether we live with divine direction or not. Is the love of life not reason enough?

Whether one believes in God has no bearing, we all live by some form of dogma or another. It matters not whether it's bestowed upon us from an elderly virgin in a golden throne, or the enculturation processes of life. We all have our codes. For me, I believe in God. I just don't call her the same name as others. My God doesn't carry a staff or have a flowing beard, sitting on clouds to judge the quick and the dead. My God reaches peaks through suffocating cloud cover, is made of the deepest greens and the bluest blues. She is enormous, and incomprehensible. She is simple and sweet with tranquility that flows and ebbs, and vile with tempests that rage in furious horror. My God is absolutely, unfathomably gorgeous, and worth celebrating.

Furthermore, I am a reverent man. If ever there is something a god would like for us in our magnificent days, it would be to appreciate the living artwork and beauty present in every single moment, of every day. I cannot weep anymore, and pity serves no one. The love of my life loves life, and so shall I.

January 19, 2013 | Walking the Skyline

The nurse told me on the phone this morning, “take it easy today.” I didn’t tell mum or Guy that (I guess they'll find out soon), and without knowing they were unsure whether I should be joining them on the ‘Skyline walk,’ which is a hike that stretches for 13 kilometres along the hilltops that make up one horizon from our house.

We began climbing Mount Kaukau, a steep uphill with stunning views. My hands clasped on my abdomen, we made it to the top fine. There were a number of people up the top, some talking about how they were going all the way to Karori, a faraway suburbs. Some were older and some simply looked unfit, and so I said to mum, “If these people can do it, so can I!” “Sure, but they’re not recovering from an operation yesterday and in the middle of radiation,” was the response.

The procedure yesterday to retrieve the eggs was a lot worse than I had expected. I had thought I would just breeze in, hand them over and breeze out. Typical Wellington though, it was a cold morning and my hands were cold (okay, typical me.) They spent over half an hour just trying to find the right vein to put the sedative into (so I now have little pricks and bruises dotting my arms), and then the actual egg collecting was just as much painful as it was uncomfortable, even when sedated.

I waited today in a sunny little cemetery to be picked up after our walk, contemplating death as you do in gardens of the dead. I could help but notice all the eerie ‘reserved’ spots for people who wanted to be next to each other, and the things that people were remembered for. “Loving husband, father and grandfather” was the most common [male] remembrance. Wealth doesn’t matter when you’re gone, neither success. We all know this logically but it really hits home in a cemetery.

So I was sitting there on a bench thinking about the value of family when you’re gone. Just then, a young family came by with three yelling, misbehaved children whom they looked quite fed up with, and not bitterly, I couldn’t help but thinking about how people don’t quite realize that it’s lucky simply to be able to have children. I say this as three of the six eggs they got out yesterday have fertilized overnight and they are quite frank when they say “you’re lucky if you get more than one to succeed.” Many women undergo multiple rounds of IVF before success and in this case, we can only hope that our age helps the success rate so we can at least have something to freeze for a later date.

And so now I am back at home, which is beginning to feel a bit like home (although I still do consider Moscow home). I may be ambitious with trying to keep living, but I’ll be the first to admit it’s really hard to get started on online classes half a world away that I am already late in beginning. To write a blog and help with the housework, or start this class that I’m already behind in and feel distant from? I have to ask myself. I guess you can see which option won this time. I don’t know where time goes – and am hoping to have more time now that IVF is finished and it’s all in the hands of the embryologists. It’s so much better being able to attend real classes, something that in regularity we often forget to be grateful for and emit the occasional complaint about.

Week one of radiation is officially completed! It’s really not too bad. In fact, I have a lot of fun striding into the radiation treatment rooms, greeting the lovely receptionist lady with a smile (who always says “why hello, darling, just go on through Bethany”). The radiation nurses are incredible too, I feel that in some ways they are my friends (although perhaps that is due to my current relative lack of physical friends). I take my earrings out and lie down in the position on the bed I have come to know is aligned with the lasers, and wait while they do the position checks. “Perfect,” they say, and then leave the room. When they have left the room, on blasts the song of choice for the day in a feeble attempt to drown out the dying bumblebee sound of the radiation beams. After about six minutes stuck under the mask, I am free and can breathe properly again. I thank them, grab my earrings and phone and wander out, making sure to say goodbye to everyone on the way.

There are just 25 of these days to go, and I understand that things are going to get harder and my hair will conveniently fall out in patches, permanently, about a week before James returns. It’s nice there is a build up as it gives me time to develop my mental strength in the situations, so I can be stronger when the dreaded chemotherapy begins.

Alright, that’s it for now, thanks for listening to me ramble about this new, crazy life! 

January 28, 2013 | Hair

Five minutes ago I had an itch on my head. Just like any other itch, this itch demanded that I reach my fingers up and, making sure not to use nails (it can be tempting) give that spot a good rub. It was a good itch.

I just so happened to look down at my fingers afterward, perhaps to thank them for relieving the itch. My hand was covered in a big clump of hair. Now, no matter how much you are prepared for the fact that your hair will be falling out this week, the first sighting of a hair-covered hand is still a shock.

I’ve been meaning to write about hair for a while now, and it seems like a fitting time to do so. Even before this experience, friends and family can attest to the fact that I have always hated the way something as futile and dead as hair can define people. I hated the way people thought they were able to hide behind it – that you could hide a face between shocks of hair and it really doesn’t matter how your face looks – no, almost certainly it’s the dead follicles around it that people will notice first.

This was a major reason why I thought it would be fun to try cutting my hair off before in my life. And dying it, dreadlocking it, straightening it (a mistake), having it torn at twice in West Africa to experiment with fake braids, etc. I guess if there was one style I never thought I would electively try though, it was baldness.

--It’s lucky I don’t need to try this particular style quite yet, that comes with chemotherapy. No, this new style, I have been informed by doctors and nurses, is likely to be a permanent “extreme receding hairline”, a hardy patch left on top while the rest of it just disappears…

Lucky I’ve always been experimental, I think. Lucky it’s me and not some other 21-year-old female who absolutely must have their hair. I’m not thrilled, but I’ll take it (I will also take the grant for headwear and wigs of about $2300 from the New Zealand government, though, thank you!).

I am reminded now that not everyone has the fortune of having hair. There are many out there with, beyond cancer, medical conditions with which they have trouble growing hair. It’s like the reminder that not everyone can have children – you don’t exactly want to be surrounded by a whole lot of mothers and babies when you can’t have children. You can, to an extent, avoid this situation…but there is no way to avoid people with hair.

Sometimes when a bout of “unfairness thoughts” hits me, it can be tempting to say to people going on with their regular lives who don’t look grateful for their existence nasty things like “hey, celebrate, you don’t have cancer,” or something awful like, “hey, you have hair, how wonderful!” But this, of course, would never happen (since being with James I have learnt more etiquette than that). Some animals don’t have hair anyway, think of them! Okay, well most do, but what about the poor little Sphynx? He doesn’t need a hair straightener or dye, or whatever other contraption hair needs, no he’s quite content to let people love him for his lack of fluff.

I really am not sure what I am trying to say about hair here. Is this an ode to my hair that has been coming out as I have been writing? Nope, this is something I can cope with. Is this to make all you hairy people out there feel bad about taking for granted of having hair? That is far from it. Then what am I trying to say?

Perhaps, yes, it is a farewell to that hair. I only hope that people I see each day can have the decency to respect this different hairstyle of mine emerging, and only hope that James, although he will try to pretend not to care, will come to learn that beauty is so much more than dead follicles. In fact it’s really for myself, the final test in a lifetime of hairstyles to see if I really don’t care like I have tried to prove I didn’t. 

February 21, 2013 | Hair #2

We had a rather special visit from Jenny Rankin this week. Amongst the delight of swimming naked on the beach where she and her husband lived 22 years ago with my parents (me growing in mum's tum) girly massage breaks and laughter over wine, Jenny encouraged James and I to begin the transformation of our words into images, both moving and still. Now me being a technophobe, I found this rather daunting.

The reason why I am excited, however, is the fact that I often find myself unable to adequately express the reality of our life here simply in words. Each visitor we had had here, including Jenny, has found it pleasantly refreshing to join us in the daily routine of radiation. While the machine is certainly space-age and a little intimidating, seeing the smiles on everyones faces and the evident support of all the staff, alongside our own happiness, the picture of treatment is a lot more encouraging than one may imagine.

It's entirely possible to be happy even when tired, or in pain. I know I've said this before, but now we will begin to show you. The first way in which I'll show you is displaying the issue of baldness and wigs. Now I know that the prospect of having permanent hair loss may seem a little depressing to some, but I've done a cost/benefit analysis and come to the conclusion that no hair is better than hair.

Here are my reasons:

1) You can choose the hair to suit your outfit/mood/plans, rather than having to do the opposite.
2) You will never have a bad hair day
3) If you want to change the colour of your hair, it's not damaging or expensive (or time consuming) to do so.
4) You can confuse people by changing hair secretly at a party
5) It's quicker to shower
6) You hair won't get tangled while sleeping
7) A wig keeps you nice and warm when it's cool
8) You are not defined by your hair
9) You can play different roles
10) You can try different styles and colours than you would usually be afraid to
11) It gives you a fresh perspective of what physical aesthetics really are, and what the value of hair really is.

James took these photos with our new camera that Jenny gave us:

The wig that used to be my cousin Evie's

...and her other one

The wig that the NZ government paid for (thanks!)

Cheapies from the US (everything there costs less)

Evie's again

I had the NZ one cut by a hairdresser as it was too similar to the other. 

Keep an eye out for more photos and eventually video - I promise they won't all be about hair!