The Ultimate Answer

In my early twenties I was sick for about three years with a debilitating problem that nobody really understood, and maybe three quarters of the world didn’t believe in. I didn’t look unwell, but I got recurrent infections and was exhausted all the time. I could marshall my forces and look normal for an hour or two here and there, but the effort cost me days of recovery time. In the early stages I spent weeks on the couch, barely able to get up and go to the loo. Then I started to get better, but quickly plateaued in a no-man’s land called Chronic Fatigue Syndrome.

The worst part about CFS was the disbelief. My own parents, and many others, found it impossible to believe in something that they couldn’t see, and that doctors couldn’t agree on. Fatigue is difficult to quantify, so it was much easier for my parents to assume I was doing too much, and just getting a little tired, than to face the devastating impact the condition had on my life.

I eventually recovered from CFS, but I was never quite the same. I couldn’t manage late nights, tired easily, and still got more infections than your average bear. Gradually I built up my fitness and changed my lifestyle, trying to eliminate anything that might be holding me back.

But what lingered more than anything was a severe self-doubt. Deep down I wondered if I was just a hypochondriac, or chronically lazy. Maybe I was nuts? During the darkest times I even wished I had something drastic, like cancer, if only because it was relatively well known and understood, and people might stop doubting me if I could hand them a neatly packaged diagnosis to excuse what I saw as my many failings. I felt awkward and self-conscious every time I left a party early. I felt like I needed excuses to justify who I was and how I behaved.

When what seemed like a promising new friendship collapsed after I left my friend’s party at 9:30pm, with her incredulous and disappointed response echoing in my ears, I could have screamed in frustration. Never mind whether there was actually a connection between the early departure and the end of the friendship. In my head my feeble body was getting between me and my life, and there seemed to be no valid reason for it. I felt like a failure.

Seven years ago, when I began to experience pins and needles in my hands and feet all the time, it seemed like another round of Guess The Diagnosis, and I wasn’t all that keen on playing. Although I was getting what felt like electric shocks in my feet with every step when I first got out of bed, it generally settled during the day, and was more odd than distressing. A normal brain MRI seemed to confirm that there was nothing much going on, and I stopped thinking about it. (In hindsight I should have wondered about that. What are the chances of my brain being normal?)

Then a few months ago parts of my feet started to go numb. I kept thinking I had something stuck to the bottom of my foot, because it felt as though there was some interference, something stopping my left foot from quite hitting the floor. I assumed it had to do with the toe injury I’d inflicted on myself when I ran through a doorway and missed a few years ago, until it moved to the other foot, which had a relatively good relationship with doorways and no injuries that I knew of.

The pins and needles got worse. Exhaustion became my constant companion, far more draining than I can readily account for. Random knives now stick themselves into different parts of my body, and then disappear. Sometimes my feet don’t quite clear the floor when I take a step, and today, just for something different, my fingers became weak and shaky and I started to drop things.

Working part time, kids, and life, are almost more than I can handle. Hot weather seems to make the symptoms much worse. I lose my balance occasionally. I get dizzy easily. A whole list of relatively minor complaints that seem trivial when handled individually become scary when you list them side by side.

Yet scary though it is, I almost want a disturbing diagnosis. I’m more afraid of not having an answer than of having a scary answer. More than anything I am looking for a reason to go easy on myself. To rest when I need to rest, without screaming at myself for being a useless slacker.

Yesterday I was messaging a friend about how frustrated I was feeling with myself. I was at Sorrento, and I felt I should have been making the most of being down there and going for a kayak, or at least a swim, but all I wanted to do was lie on the couch. My friend seemed nonplussed by all this self-aggression. “You’re allowed to do nothing sometimes,” he said. “You need a rest. You’re burning out. You need to go easy on yourself.”

As though I had been given a note to skip school, I immediately relaxed and did nothing for a few hours. But it started me thinking. Why do I need a diagnosis to be kind to myself? Why do I need a medical certificate to give myself permission to rest when I’m tired?

Sometimes, when people find out I have a PhD in Computer Science, they say “oooh! You must be so smart!” and I shrug ruefully and say “More stubborn than anything.” It seems I have turned this stubbornness on myself, and used it to push through and keep working, in sickness and in health, until I literally drop.

My feet still tingle to the point of pain sometimes. They go numb, I lose my balance, and I am so very, painfully tired. I have no diagnosis, although I have a specialist appointment in a few months’ time. But with or without a diagnosis, I’m going to write my own medical certificate:

To whom it may concern,

Linda McIver is suffering from extreme stubbornness. She may occasionally need to be whacked about the head with the frying pan of perspective. Until further notice she has permission to rest when she needs to without feeling the slightest bit guilty, and is under strict medical instructions to be nicer to herself.

Signed,

Dr Linda McIver, PhD.

I’m still looking for answers, but maybe first I need to work out what the question is.

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Heart strings

Grief never leaves you. Whether lapping gently at your feet or lifting you up and dumping you hard on the rocks, the waves of grief become a constant in a frighteningly inconstant world.

Sometimes I run from them, investing heavily in life in a bid to drown out the roar of death in my ears.

Sometimes I seek them out, obsessively reading about the grief of others, hoping to find the pieces of my broken heart in the words of strangers.

Sometimes they leap out at me from inside what seemed like a safe and lighthearted distraction.

There’s a lot going on in my life right now, and I am… somewhat vulnerable. So I took refuge in some timeout with William McInnes’ sweet and quirky new book, ‘Holidays’. Which was an excellent move right up until the last four pages, which picked me up and slammed me onto the rocks of grief before I knew they were even there. And then they hugged me, smoothed down my ruffled feathers and placed me gently back into my seat, where I sat, slightly stunned, with tears pouring down my cheeks.

In hindsight they were tears that have been hovering for weeks now. Tears of grief, of fear, of stress. Tears of love, of laughter, and of exhaustion. I knew they were there, but I wasn’t planning to let them out.

Caged tears, though, are as corrosive as flowing tears are cathartic. Far better to have a devious author sneak inside my heart and break open the cage without my consent than to keep trying to pretend the cage wasn’t even there.

There is a kind of camaraderie among the grieving. In McInnes’ book an acquaintance saw his grief and hugged him. I imagine it’s quite likely that this acquaintance has griefs of his own. He knew what he was seeing.

Once, when comforting friends in desperate grief, a fellow comforter looked into my eyes and said “this isn’t new to you, is it?” Grief marks you. It’s a club you never wanted to belong to but can’t possibly leave. But there’s an obscure comfort in knowing, once you’re in it, that it’s not a club of one. That others have been there, are there, and can recognise and even console your haunted heart.

I don’t know how to contact William McInnes, which is a shame, because I would like to be able to thank him. There will be other tears, and other cages, but his book spoke to me today, and they were words I needed to hear.

How to be a superball

I was lucky enough to hear Hugh van Cuylenburg speak yesterday about resilience. Resilience is the power to recover from trauma. Hugh describes it as the ability to bounce back, but also to bounce forward. To take the setbacks of today and make them the building blocks of tomorrow. To build everything that happens in your life into a new, stronger you.

We’ve all known people who bounce like a superball regardless of the trauma life throws at them. And we’ve probably all had times in our lives when it feels as though the next straw to land on our overburdened backs will crush us irretrievably. At moments like that, resilience seems like something elusive that only other people can have. Hugh’s message is simple and potent: Resilience can be taught. It can be practiced, and strengthened, like a muscle. And it is astonishingly simple to do.

At the risk of oversimplifying several hours of compellingly personal and highly entertaining stories, backed by solid research data, it boils down to three things:

  • mindfulness
  • gratitude
  • and empathy

Most of us live our lives like a kind of electron cloud around the nucleus of the present. We are a blur of thoughts about what happened yesterday, what might happen tomorrow, and all of the things we need to do. We are having arguments in our heads with people based on what we think they might say, and building mental bastions against situations that might never arise. We are everywhere, all at once. Preparing for everything to come, rehashing everything that’s been, and adding in a whole lot of hypothetical stuff that never was and never will be. It’s exhausting.

What is she thinking?

Why didn’t he return my email?

What does he think of me?

How am I going to get through this week?

What if she won’t talk to me tomorrow?

Why did I do that?

Unlike electrons, however, we have the power to come to rest on the nucleus of our present. We can decide to focus in on this present moment. On the world around us. On how we feel. On what someone is telling us. On what is going on right now. Research shows that this ability to be mentally present has all kinds of clear, tangible, physiological as well as psychological benefits.

But like deciding to play the piano, it’s not necessarily something we can simply sit down and do, right off the bat. We need to know the right techniques, and we need to practice them. We need to get into the habit of being fully present, rather than defaulting to being that buzzing, fizzing electron cloud, and only ever noticing the present once it becomes past. The good news is that as little as 5 minutes mindfulness practice a day can help you to live in the moment.

I’ve written about mindfulness before. It was Gratitude and Empathy that really struck a chord with me yesterday. New research shows that writing down 3 good things each day – 3 things that went well, that you are grateful for – together with their causes, can make you happier, relieve depression, and effectively inoculate you against future trauma. It doesn’t mean you will never be traumatised, of course, but it helps you be that superball and bounce back and then forwards, rather than dipping down into depression.

Hugh described it in a way that made a lot of sense to me. It’s as though we all have a level of depression and anxiety. Traumatic life events drop our happiness levels down, and can drop us low enough to tip us into depression. If our depression level is high, it takes less trauma to reach that level. But if our depression level is low, higher levels of trauma will still avoid tipping us into depression. Simply being consciously grateful for 3 things each day can significantly lower that base depression level.

depression, life events, and the impact of gratitude graphed
Gratitude can lower your level of depression and prevent traumatic events from pushing you into depression.

The final point, empathy, is in some ways related to mindfulness. If you are in the moment, aware of your surroundings, you will also be aware of the people around you. It’s only a short step from there to choosing to help them. Actively helping others has been shown time and time again to increase our own happiness. From random acts of kindness to helping out when someone is in a fix, empathy is also a way of building communities, and a sense of connectedness for both helper and helpee. Even a small thing like pausing to give someone directions can materially add to your own well being. There’s just no downside.

I found the research pretty compelling, but I also know that this stuff works on a deep and personal level. I have watched mindfulness and the Thankful Thing change my family’s lives. Sure, some days we forget to do the thankful thing. Sometimes we don’t manage to sit down and make space in our lives for mindfulness. But even though we don’t do it every day, it has transformed us. It has given us coping strategies we never thought were possible before. And even though we know how much it helps, sometimes we need to be prompted to get back to it.

Hugh van Cuylenburg gave us a powerful push yesterday. You can find him on youtube and on the web if you need a push of your own.