The Luxury of Despair

The Welsh singer-songwriter Martyn Joseph sang at a music festival in our village last August. A song was about the conflict in Palestina and the fate of those innocent civilians living there. „Despair is a luxury,“ he sang. (There’s the link – check the song out!)

Martyn Joseph singing
Martyn Joseph singing at our annual music festival in August 2018

Those lyrics struck a chord with me. I remembered how a neighbour met me in a train last May. My hand and arm were bandaged with a dressing of anti-inflammatory cream. The medication that had transformed my life since Christmas 2015 had been working less well in the previous months. Now it had stopped working entirely, and alternately my wrists, arms, knees swelled up. I had backache and felt exhausted, drained of  energy, not rested after sleep. We talked a little, and she said, „You are brave.“  I said, „I’m not. I have no choice.“

Inside I didn’t feel brave. I was frightened. Frightened that the joy of life, given back to me by the treatment, was lost. Frightened that I would go back to chronic pain, frightened that I might not be able to work, frightened that I would be too tired to go out into the world, and loose the social life that keeps my soul afloat.

Six months on, one of the alternatives that are currently available, does seem to be working. The swelling disappeared in June and the back ache that plagued July is gone too. Side effects are being controlled with another medication. I am energised again, able to get up early, go hiking, swim, go out in the evening and generally feel good about myself again. I’ve just been on holiday for two weeks of swimming, diving, reading, eating, fun with friends, and generally had an amazing time.

In retrospect, it‘s a shame that I allowed several months to be marred by feeling miserable. My doctors are caring and will do their best to find a treatment that will help me. I am incredibly lucky to live in a country where my treatment will be paid for, more or less whatever it costs. (Think of the people in poorer countries, where this is not the case; and for the Americans with disorders like mine, who told me that they will not get insurance cover, if President Trump’s health care reforms are enacted).  I have a job and an understanding employer. I have a secure home, and a loving family. There are plenty of things I can still do, even if I have aching joints. Things could be so much worse.

Despair is a luxury” sings Martyn Joseph. If you can‘t change anything, then despair has no use – it’s like a luxury. That’s how I understood the words of the song, So, if despair can galvanise me to go into action and change something, then it’s useful. If not, despair is only destructive and will never end. Acceptance and trust are the keys; enjoying every moment, when nothing is seriously wrong – and of course even during a flare-up, there are such moments.

Meditation is the greatest tool I know to instantly get into a mind-frame of acceptance, trust and happiness. But exactly when I’m in pain and feeling bad about myself, is the time when I don’t use it! If I have backache, or other aching joints, I find meditation most difficult….. Will I manage better next time? I’m working on it.

When things don’t go according to plan – An April Fool’s Day Joke?

It’s time to come out with it! In January I broke my leg skiing. Now it’s April, and I STILL have a sort of plastic brace on my leg. I’ve barely been out of the house since the accident, except to go to the doctor’s or physiotherapy. But I’ve been to many places inside my head and – thank goodness – I’ve come back again. Life is still an adventure, even within the constraints of hoping around the house. But this is an adventure I could probably do without.

Skiing below the Eiger North Face
Below the Eiger North Face minutes before my accident

So here is the photo of me just before it happened. I’m looking at camera in my orange jacket and black helmet. To the left is the Eiger North Face. We are a group of friends planning to ski down a long descent just under that iconic mountain. We even had a wonderful local guide/teacher with us. Now, on Easter Sunday, it seems such a long time ago.

I was concentrating on practising my new improved short turns in deep snow, and didn’t notice a sort of drop to my right, someone came too close and to avoid a collusion I veered right and at the moment of falling into the drop, I couldn’t decide whether to brake and fall sideways or try to jump cleanly into it, so I fell straight into it and at that angle my touring ski bindings didn’t open.

Just the day before I’d seen Tom Cruise on the Graham Norton Show breaking his ankle and then running on. I was so impressed, but somehow something uncanny resonated with me that evening. So when a similar thing happened to me the next day, I was very aware of what was happening and knew instantly that I had broken my leg (tibia for people who know about bones), and that this was going to be a long story.

My friends helped me back to the main slope where a sort of motor bike on skis picked me up and took me to the Alpine train station called Scheidegg. I was put on a train back down to Grindelwald. During the train journey a middle-aged man, who was obviously used to telling people what to do, hit my leg with his ski stick and told me to take it off the seat. I breathed deeply and managed to remain courteous, but my explanation caused him to beat a rapid, wordless retreat to another seat. At Grindelwald the ambulance was not there as promised, so two station masters carried me to a taxi, which took me to a local doctor, who seems to earn a good living in winter x-raying people and encasing their injuries into plaster. The doctor also gave me a bottle of an opiate based pain-killer that I know from serious AS flare ups, so I chatted nonstop and cheerfully to the woman in our group who kindly drove me home. Goodness knows what I found to talk about!

At home a neighbour helped me set myself up with cushions in bed and an office chair to scoot around the kitchen. Over the next weeks my son visited regularly and helped with things like putting the rubbish out and filling the bird-feeders, neighbours shopped, and the Red Cross taxi service took me to the doctors. The ice and snow only melted in mid-March, so until very recently it was almost impossible to go out safely .

My well-being is very dependent on lots of movement and sport, and when after 10 days I was suffering from acute backache, I was terrified that a AS flare was starting. I started taking NSAIDS (Nonsteroidal anti-inflammatory drugs) regularly again, and they upset my stomach and made me feel sick. However, massage and physiotherapy managed to relieve the pain, so I could stop taking medication.

I got very lonely sometimes. Many friends visited and that saved me. But my daughter had only just moved out two weeks before and was abroad, so I was living alone for the first time in about 30 years. Morning meditation was difficult at first because of the pain, but I kept writing a journal and trying. That time in the morning is special, because it helps me to reframe negativity, create intentions and a purpose for the day, and live in the present moment. An example: on days when I saw nobody was to pose the question: “Am I lonely, or do I have the opportunity to enjoy a day of solitude?” Around me are so many people who are stressed out by the demands of their jobs and other people, and who would love a day by themselves.

One of my friends who told me that she’d never broke a bone, promptly broke her left leg skiing too. So we are thinking of forming a Facebook group. Anybody else?

Andrea and Judith broke their legs skiing
Andrea and me both broke our legs skiing in Winter 2018

Now the weather is a bit warmer and the snow has melted. I can put weight on my leg. Next week is another X-ray and if the bone has mended, I will loose the brace. Only downside is a sort of wandering Arthritis. Yesterday my right index finger and left elbow were swollen and painful. Today it’s my right knee and a bit in my right wrist. I’ve had this twice before – anybody else know it?

But otherwise life is looking up.