Goodbye

IT is funny how one small thing can change everything.

It happened to me today. I was reading a cancer survivor’s blog. She said, “I don’t want cancer to define me.” Suddenly I accepted something I have been fighting for a while. I let go.

I was clinging to it out of loyalty and wanting to “be there” for othes who have just found out they face a transplant, or who have just been diagnosed with cancer. It, of course, is this blog. I am saying goodbye.

I started it because when I faced my transplant I could find little that told me that life could be normal after such a huge operation. I wanted to write something honest and hopeful. The way several people have reacted shows me that I have done so, and I am enormously humbled and grateful. I have found enormous self-affirmation in this.

If a fairy appeared before me now offering to wipe the experience of having cancer, and the experience of having a transplant from my life I would say no thank you. I have been greatly blessed by both. I have learned the depth of the gift that is life, and its fragility, I have made peace with my mortality, I have learned that if I died my loved ones would survive without me, but that I am deeply loved. Both of these last lessons have humbled me and also enormously enriched me.

I have learned that honesty and vulnerability are some of our most important attributes, and I am learning to reopen a heart that put up armour. I have learned that life is short, and generally wonderful, and a hardened heart doesn’t really protect you from pain. It just locks it in.

I have discovered that kindness is to be cherished, and that letting go s an important part of personal development. That is why I am letting go of this, despite a smigeon of guilt that I am “betraying” people out there facing the crucibles of dread disease and its treatment.

To hold on is to stay in a place where cancer (which I no longer have) and having had the transplant define me. In a way they always will, but thinking of topics for this blog keeps me holding on to the effects of two defining experiences that need no longer be my most important definers.

Goodbye, and thank you.

Dandelion Flowers – Blowballs at Sunset

Lessons in Humililty

I AM bad at surrendering, to anything. It goes against a need for self-reliance that lies deep within me. My transplant operation taught me the beauty of submitting to my new physical weakness, even if I wasn’t that good at it. (Just so you know, it took me a while to bring myself to write those sentences. Me admitting surrender and submission? It’s a hot summer here, but it may just snow.)

When the physio arrived the day after the operation to make me walk — I think I made it around the bed — I wanted to do it, to be impressive, to prove to myself I was undefeated. I needed her to lean on. Lesson one in humility.

I was enormously proud that I left hospital fairly quickly, after two weeks. It proved to me that I was strong and somehow special. But here’s the truth: after 10 days in hospital a doctor said, “Well, we think you can go today.” Part of me crowed with pride, but there was another part of me that didn’t want to go, that worried about how I would cope at home. I was afraid of my need for help.

When I did go home I wanted to get going, to cook and clean and look after myself, to regain my place as mother, queen of my domain. The doctors, however, had demanded that I not be alone and my mother-in-law came to stay and do all of those things. Part of me wanted to do them myself, but I found them enormously tiring and I had to let go and let her take over. For someone like me, bent on proving my independence and regaining my place, that was humbling too.

The thing is, I didn’t stop being wife and mother and even a friend when I was so weak, but for a time I lost the outward power of those roles. I was forced to surrender to my weakness and to others’ love and care. I was enormously humbling when I realised that people loved me, not for the things that I do, but for who I am.

After a year I was mostly myself again, those first three months off work, slowly recuperating seemed fairly distant. They seem even further away now, almost three years later, but it is good to remember that weakness and that even in it I was loved.

Our society is full of individualism, and we are so often judged on what we do. When we meet people, one of the first questions is often, “What do you do for a living?”

The tendency to independence runs swiftly in my blood, but having had this transplant is a constant reminder that I am not here because of myself and I am not loved only for what I can do. I certainly had a hand in my recovery, but I am here because of the love and care of so many others.

2015 in review

The WordPress.com stats helper monkeys prepared a 2015 annual report for this blog.

Here’s an excerpt:

A San Francisco cable car holds 60 people. This blog was viewed about 2,500 times in 2015. If it were a cable car, it would take about 42 trips to carry that many people.

Click here to see the complete report.

A very happy Christmas to you

Christmas. I love it. I also realise that to really do Christmas you have to be really present, with the people with whom you are having Christmas.

So, I am taking a break till new year. Even if you are not Christian, this Christmas I wish you all that is good about the season – love, cheer, goodwill, charity, giving.

Cancer, perseverance and life

PERSEVERANCE is not something our world often talks about.

This morning as I was leaving home I saw a friendly, deep orange face in my drought-stricken garden. We in South Africa are facing the worst drought in 20-something years. I have no idea how farmers are coping. I feel deep frustration and an unending background sadness every day as I watch clouds build up and then dissipate and I am a city-dweller.

There it was. A lovely, deep orange nasturtium flower bravely blooming despite the surrounding dryness. Later, swimming at gym, I thought of that flower. I was sluggish, I felt a lack of power in my arms and legs as I cut through the water. Bad Sue thought, “Oh well, it’s not meant to be today, maybe you should do 10 lengths and leave it.” Good Sue thought of that flower: “If the nasturtium can do it, so can I.”. I did my usual 40 lengths (1km) and felt better for it. Yip, I was slow and it was tough, but I persevered and that in itself gave me a sense of power and accomplishment.

Here it is:

Some things in life are hard, but in order to succeed we have to battle through. A tough academic course, radiation, a marathon, chemotherapy, learning to play the violin, watching a loved one suffer. I have faced some of these things, and I know that the reason I am still here, happy and (relatively) healthy, is because I am lucky enough to have been blessed with perseverance. Some may of course call it stubbornness, but I think perseverance is different, more like determination. The determined will keep going while there is reason to do so, reason is not considered by the stubborn.

The obvious question, then, is was my pushing through swimming perseverance or stubbornness? I’d say it was perseverance. I was not injured, I was just physically tired, possibly from the previous day’s gym session. Determination kept me going, stubbornness would have kept me going despite an injury that should have been rested.

There’s a lesson here for those who are facing things like cancer and other “dread diseases”. Perseverance and determination will get us through the various treatments, many of them really horrible, that may cure us or buy us some time to continue with “quality of life”. Stubbornness, however, might have us demanding these things when it might be better to let go and let life end.

Let me sow peace

THIS week I am just going to leave this here. With all the problems the world has, and all the sadness so many people hold within themselves, it doesn’t matter what your religion is, or even if you have one, in fact, even if you are a confirmed atheist, these sentiments are just wonderful (if you are not religious, just skip the eternal life bit).

Lord, make me an instrument of thy peace.
Where there is hatred, let me sow love;
Where there is injury, pardon;
Where there is doubt, faith;
Where there is despair, hope;
Where there is darkness, light;
Where there is sadness, joy.
O divine Master, grant that I may not so much seek
To be consoled as to console,
To be understood as to understand,
To be loved as to love;
For it is in giving that we receive;
It is in pardoning that we are pardoned;
It is in dying to self that we are born to eternal life.
– St Francis of Assisi

• Photo of African Jacana in the Okavango Delta, by my husband.

Book Therapy

TWO British women who love books have started a business that offers reading lists to people with problems. Bibliotherapy, they call it.

Books have often been my therapy. There is perhaps no better illustration of this than that for the first 18 months after my transplant I almost disappeared into books. Reading involves stepping completely away from the self and into another world completely, one that knows nothing about you.

 

Amused, comforted and intrigued at the idea of bibliotherapy, I have come up with a list for those facing life-threatening illness. It’s not complete, or perfect, but here it is:

* Charlotte’s Web, EB White.
I know of no lovelier tribute to the power of friendship and trust; nor any gentler, more open-eyed view of death and its transcendence.

* To Kill a Mockingbird, Harper Lee.
In which we learn that kindness and dignity need not involve surrender; and also that there is much in life that is unfair, but that need not erode our dignity.

* Sense & Sensibility, Jane Austen.
To learn that hiding feelings leads to heartbreak, but so does an excess of them, and, importantly, that friends want to help, and most easily give practical help. When they offer, we should accept.

* Anti-Cancer: A New Way of Life, David Servan-Schreiber.
A book that gives lots of practical advice the implementation of which made me feel I had regained power and agency. Servan-Schreiber does this without ignoring the emotional. I read it three times and got something new each time.

* The Lord of the Rings, JRR Tolkein.
Another book that shows the power of friendship, loyalty and love, and one that shows that the battle against evil is always worthwhile, no matter how the odds are stacked.

* The 100-Year-Old-Man Who Climbed Out the Window and Disappeared, Jonas Jonasson.
Because we need to know it is OK to make it up as we go along.

* The Little Prince, Antoine de Saint-Exupéry.
This whimsical and insightful tale shows the beauty of existence and of the world; and — importantly — the necessity to tend to our loved ones and just what it is that makes a loved one unique to us.

* Winnie the Pooh and The House at Pooh Corner, AA Milne.
Not only do we get giggles, we get wonderful insight into what is truly important: friendship and complete acceptance.

Here is a link to the article on bibliotherapy http://www.newyorker.com/culture/cultural-comment/can-reading-make-you-happier

Shooting myself in the foot …

OTHER people’s emotions are not my — nor your — responsibility. I don’t know about you, but while I see the sense of that statement, I have a hard time acting accordingly.

It began like this. One of my sisters lectures engineering at a university. The students are writing end-of-year exams, and one of her final year students is a young man whose brother is dying of cancer. The dying brother wants his healthy sibling to write his exams. He is hoping to see his brother graduate.

“Yes, but that is selfish,” said another sister. “Too much pressure, and he should allow his brother to say goodbye.”

“It’s not selfish at all,” I countered. “It’s thinking of the healthy brother whose life is going to go on.”

So far, so good, but then I went on; neatly shooting myself in the foot.

“Believe me,” I said, “When you are so sick you think you might die — so not even when you know you will die — one of the hardest things is that you spend a lot of time managing other people’s feelings.”

I stopped to think.

First I had intimated a pure motive — thinking of the other’s future. Then I killed it with another motive entirely — managing the other’s emotions, so that their raw grief, or anger or whatever would not impinge on mine.

Emotions, especially intense ones — love, grief, anger — they are hard to deal with when they are unbridled. I doubt many would disagree that we shy away from them because of their capacity to consume us, whether they are our emotions or others’ directed at us. They terrify.

I know I am not the only one whose knee jerk reaction is to try to manage away other people’s emotions. “You don’t get to tell me how I react to your getting cancer again,” an indignant and distraught, friend told me once.

I had no answer. I don’t think there is one. The depth of her feeling shook me. We think we want to hold another’s heart in our hands until we do. Then the responsibility of it all has us packing sandwiches in a spotted hankie.

She was right, though. None of us gets to dictate another’s emotions. Heavens, quite often we don’t even get to dictate our own.

In Praise of the Ordinary

Imagine life without the ordinary daisy.

I’M SITTING here smiling at my arms. I know, odd, hey?

Just a few weeks ago I wrote about how I felt a new me emerging. One that wanted to get fit and strong, one that had at last shrugged off the need to cocoon myself. It’s fun, this new me, and (as regular readers know) it got involved in a push up challenge.

I think I’ve been training for just over two weeks now, and my arms are beginning to show a change; some muscle. Right now, the muscles over my shoulder are under gentle burn thanks to this morning’s session. It feels good.

Misery, they say, loves company. I found it easier to write this blog when I was battling physically and emotionally, there was material with which to work. Now that I am happier, and a lot calmer, I am sometimes stumped. It’s a good place to be, but it doesn’t make much of a topic to write about. My life is very ordinary.

I get up, do yoga twice a week, swim once a week, wake my daughter, get ready for work and school, work, go home, cook supper, watch TV with my husband, read a bit, go to sleep. Repeat. There are those for whom that description of suburbian domesticity will sound like hell. It’s my heaven.

Some very admirable people, after an encounter with cancer, a transplant, multiple sclerosis, bomb blasts …the list goes on, change their lives radically. They leave jobs, march across deserts, climb mountains, raise money for various causes, dedicate their lives to helping others. I salute them all. Their stories are inspiring.

Right or wrong, when I knew that I was going to have a transplant, what I wanted from having one was normality. I wanted my life to go on as it had.

Just before, and just after the transplant, that was hard to imagine, but here it is: ordinary life.

What’s more there is something to be celebrated in the ordinary. The world needs quiet, ordinary people as much as it needs heroes.

Every now and then someone who would otherwise have lived an unremarkable life finds themselves pushed to the leap into frozen rivers to save people from a capsised boat, or clamber into a burning car to drag out the injured. Interviewed they say they simply did what the had to do, that they felt they had no choice, sometimes that they didn’t stop to think, they just did.

Before I had cancer or a transplant I looked at anyone who survived either as remarkable. I don’t feel remarkable at all. I feel ordinary, which is great because that is what I wanted to be: just an ordinary person making the world a better place by being a quiet citizen trying hard to be good and kind and honourable.

There are millions of us, all over the world. We get up every day, feed the kids and the pets, take children to school, work as best we can, pay taxes, try to always speak quietly to the irritating, smile, say thank you, drive as safely as we can.

The world absolutely needs heroes, those people who inspire us, and show us that ordinary people can extend themselves, can step up to the plate when the going gets tough. The world also needs us ordinary people. We keep it running, we keep society ticking over. So, smile, chances are you are an ordinary hero too.

Living la buena vida

Here’s me, walking in the Namib desert after my transplant. It was hot – the long sleeves etc are to protect me from the sun.

A FRIEND phoned the other day and asked if I would be prepared to talk to someone whose husband faces a liver transplant. Of course I would. That’s the whole aim of this blog.

As I have said before, when I faced mine just over two years ago the worst thing for me was that I just couldn’t imagine what life would be like afterwards. Neither could I find much on the internet that showed that life was fairly normal after that big operation. There was a lot out there that was simply horror stories — all the stuff that can go wrong. Worse, all the pre-transplant training I had indicated (I think inadvertently) a life lived in some sort of hyper-clean bubble, cut off from others. Happily, I have found all this to be nonsense.

Here’s what life is like: pretty much the same, when you come down to it.

Yes, I take a step back if someone tells me they are sick. If you have something highly contagious, I will send WhatsApps or SMSes or Facebook messages instead of actually visiting. I am on immune system suppressing drugs and I have to be careful. Yay for modern communication techniques!

Yes, I use hand sanitiser more often, probably, than the average person. But that’s not even every day. I do wash my hands quite a bit. So should we all.

As I have said before, I’ve been camping (it was great), hiking (lovely), hot air ballooning (mind-blowingly fantastic), rock and indoor wall climbing (safer than what comes next), cycling (I have decided it is a contact sport best left to the brave, I shall cycle to the shops and back). I have travelled overseas (I didn’t even wear a mask in the planes, didn’t get sick once and my biggest challenge was working out taking time-specific drugs while halfway around the world, which wasn’t really a problem at all). My day-to-day life is very, very normal.

I wish I had known that when I was facing my transplant, it would have reduced my anxiety enormously, and I was enormously anxious. There are so many medical exams to get through, and you don’t know which ones might disqualify you. You have little control over what is happening, and, for me, the idea I might have a transplant came in one day. I went into a surgeon’s room thinking I would have part of my liver cut away, and came out having said yes to a transplant. The wait to get on that list is terrifying because you want that transplant, and a new lease on life, but what you want is also, in itself, seems terrifying thing. I am living proof it need not be.

I go to work every day, I go to the shops, including pharmacies (one fellow transplant recipient told me he avoided them, which is probably easier for a man than a mother), I eat out, even fast food (a get-ready-for-your-transplant nurse made it sound as though takeaways would instantly kill). I am more careful, yes. If something looks even slightly off, I toss it. If I am not sure, I toss it.

I would miss a beer on a hot day, but non-alcoholic beer tastes pretty good. I do miss a glass of red wine, but on special occasions I have a little bit, maybe a sixth of a glass. The pleasure is similar. They make pretty nice, dry, non-alcoholic champagne here in South Africa.

There are foods I can’t eat, and sometimes I do have a short flash of resentment — after all, who doesn’t love a crispy prawn with garlic butter, a gorgeous bowl of bouillabaisse or some squidgy Brie cheese — but, really? Food? It’s hardly the end of the world, especially as the things I was afraid I would lose I believe I will still have:

– Watching my daughter grow into a teenager and then a woman.
– Growing old with my husband.
– Dancing at my daughter’s wedding.
– Grandchildren.
– Seeing nieces and nephews grow up.
– Going to my brother’s wedding.
– Watching the sun rise from my tent.
– Growing old with my friends, and watching their kids grow up.
– Spring rain, Highveld storms, African sunsets and sunrises.

Life is good, and thanks to some enterprising doctors and some kind nurses, my friends and family and, most of all, my husband and daughter, I am here to live it.

I plan to die around 80-something, which gives me another 35-40 years. I can wait!