I’ve always had a bucket list. I add things all the time and I change my mind about which items are the most important to see with my own eyes. I have crossed a few things off – and every single one has been worth the effort, no matter how different it was from how I imagined it. There is so much pleasure to be had in identifying a goal and setting out to make it happen! Let me tell you about one of my favourites.
I do a bit of work-related travelling. Most of it has been very “first world”: trips to places like the US to meet with collaborators or attend meetings. This is what I think of as “safe” travelling. Going somewhere that I’ll be able to read the signs, most people will speak English, I have a fair understanding of the culture, it’s OK to drink the water out of the tap, and provided you have insurance, decent health-care should be readily accessible in an emergency. That’s the theory, anyway! I had a particularly difficult trip to the US a few months after I was diagnosed – perhaps a topic for another day – that left me very, very nervous about planning overseas travel for fear I might become unwell while away. I continued to go places once or twice most years, but for my first several years of living with MS, when I also lived with very frequent flares, planning overseas trips – even “safe” ones – was terrifying.
The first time I felt truly comfortable planning an international trip again was in 2006. I’d started on a new (to me) disease modifying therapy that had turned off my frequent flares almost overnight. For the first time in years I felt a little confident in my chances of staying well for a couple of weeks in a strange environment. And so it was that I agreed to go on a two week odyssey with a colleague, visiting various cities in the North West of India at the hottest time of year to run training workshops for the local medical staff. Talk about jumping in the deep end! We visited Srinagar in Kashmir – surely among the most beautiful places on earth, despite the political situation - where we met amazing physicians working so hard it made me tired just to hear about their lives. A few days in Jaipur, where it was 48C in the shade, were made possible by the uniform kindness of our hosts who plied us with cold, bottled water and ensured air-conditioning wherever possible. Seeing beggars wilting in the heat, some of them cradling babies with sunken, dehydrated eyes, was a stark reminder of how difficult survival in such a climate is for many. Then in the middle weekend of our trip we had one completely free day based in the centre of Delhi. Since I had never been to India before, the colleague I was travelling with offered to do whatever appealed to me. Out came my bucket list, and somewhere close to the top was stamped “Taj Mahal”.
Agra, where the Taj Mahal is located, is about four hours’ drive from Delhi and it costs little to hire a car and driver to take you wherever you want for a day. So, to fulfil my dream, we set off early towards the world’s best known monument to love. On the long journey there, we amused ourselves by reading in our “Lonely Planet” guide about all the locales listed on the highway signs we drove past– including horrifying accounts of Union Carbide and the continued failure to compensate victims of their chemical leak in Bhopal. Eventually we reached Agra, joined a long line of vehicles vying for parking some distance from the Taj Mahal and made a pact with our driver (using a mixture of broken English and sign language) about what time we would meet him outside a particular gate. Then the real adventure began!
First you have to get from the car parks to the monument’s entrance. No motorized vehicles allowed, but getting there on foot is also rather difficult, with a swarm of rickshaw drivers determined to have your custom. But slowly we inched our way up the dusty road to the gate, paid our entrance fees, and walked into the stunning grounds with dazzling marble pathways, manicured gardens and the lake.
It is hard to describe how hot the heat is on a 45C day when you are surrounded by snow white marble reflecting the sun’s glare at you from every direction. There is simply nothing you can do to escape it – and the teeming crowds in Agra on a Saturday don’t help! But somehow, the extraordinary beauty of the Taj Mahal was crystal clear, even to my usually heat sensitive eyes. We walked slowly across the park in the burning mid-day sun, took off our shoes where instructed, and ascended the marble steps to wait for our turn to go inside. I still don’t know how I made it up (and down) those hand-rail free steps in such intense heat without a fall, but somehow I did. And the sense of achievement was amazing! After we’d done all we had to do for me to cross the Taj Mahal off my list, I sat on the stone bench and had my colleague take my photo, just as Princess Diana’s photo was taken years ago. That was the first bucket list photo I ever sent to my neurologist – with a short but jubilant email telling him I’d made it, stairs and all, in 45 degree heat! If any of you have been through a period of very frequent flares and unpredictable health such as I had in the few years before that trip, you will understand both my sense of victory and my neurologist’s pleasure when he got the photo.
The Taj Mahal was the first big ticket item I crossed off my list in my “post MS era”. There have been others since, but that one will always be special to me. It marked a turning point in my life – a transition from years of paralysing fear and self-doubt (so easy to let them overwhelm you when you live with the uncertainty associated with MS!) to feeling able to plan and give things a go again. Part of the change has come through my health being relatively stable in recent years. Part of it has come from adjusting my expectations. I wanted to see the Taj Mahal, and I achieved my dream and allowed myself to revel in that. The “high” of getting there was not dimmed by having to stop half way across the gardens and sip water in the shade until I could scrape together enough energy to continue. The bone-deep exhaustion brought on by our time in Agra made just sitting in the car all the way back to Delhi an almost insurmountable task. But it was so completely worth it! As I lay on the cool, clean linen of my hotel room bed that night, too wiped out even to eat, my mind played over and over an internal slide show of the wonderful things I’d seen. Before sleep overcame me, the uncomfortable aspects of the day had already faded beside the memories of the dazzling white marble wonder I had imagined seeing for so long.
Since my brief adventure in India I have never deliberately turned down an opportunity to see or do something amazing. My long-suffering neurologist has been sent a “bucket-list photo” most years, and still seems to appreciate my little triumphs right along with me. Whatever my future looks like with MS, I don’t believe I will ever stop adding to my list or crossing items off whenever I can. The rest periods between events (already carefully planned for) may need to be lengthened. I may have to adjust how I get places. But I have plenty of fabulous dreams that will be achieved close to home, seated if necessary. I have not yet seen the Meer Cat enclosure at the Royal Children’s Hospital. I’ve never watched any of the “Star Wars” movies. I have yet to visit Central Australia or see the Great Barrier Reef. It was only last year that I achieved my first ride on a ferris-wheel. Entry to the National Gallery of Victoria is free, and I have not properly explored the great art works housed there in years. I want to take a guided tour of Melbourne’s best street art, too. One day I hope to learn another language – at least to conversational level – and I’d love to help a refugee learn English. There are lots of uncertainties in life, but one thing I do know about the future – I’ll never be bored if I stick with the motto of my local MS organisation: Face the challenges, retain the dreams.
The Unaffected One