At the end of July 2018, my world imploded when Rich, my husband and soulmate, unexpectedly passed away at the age of 37. Since meeting ten years ago, we’d become inseparable. We discussed marriage on our first date, and felt immediately that we’d become one. We lived for each other.
Whilst Rich had been born with NF2 – Neurofibromatosis type II, a rare genetic condition that causes tumours to grow on nerve endings throughout the body, his life expectancy had been normal, and so we thought we had decades more to love and enjoy each other. Neither of us had anticipated that Rich wouldn’t reach his thirty-eighth birthday.
Rich and I are passionate about walking and wild swimming. Every holiday and weekend was spent walking in the wilds, or swimming outdoors. It helped us manage living with NF2, when Rich was pretty much in constant pain from some of the tumours, and they and consequent surgeries had had numerous unpleasant side effects. For instance Rich had ended up with a tracheostomy after one operation (which almost killed him, and took away the last of his hearing), and was told that he’d never again eat normally. But Rich being Rich pulled the tube out after a few months, and insisted on teaching himself to eat again, despite a partially paralysed tongue, throat and airway. Not only did Rich eat again, but he loved to cook, and food was a huge part of our lives. We cooked from scratch every day, and made sure that our meals were a pleasurable experience, because as Rich said, given that eating was a leap of faith (he’d often choke, and I had to perform abdominal thrusts), then he wanted only to eat bloody good food.
But back to the walking and swimming. It’s what we did, it’s always been our thing, our way of exploring landscapes the world over. We had our last wild swimming adventure 8 days before Rich fell ill, when we got up at 4am to drive to Skenfrith to swim in the River Monnow for the Summer Solstice. We then cooked chocolate porridge for breakfast on Rich’s favourite piece of kit – a portable wood burning stove. The day Rich fell ill, we’d been due to drive to Anglesey for a week of walking and wild swimming. Rich was so excited, not least because he’d bought a new wetsuit to try out.
Rich’s death has devastated me. As soulmates we still have many connections, but his physical loss has meant that a large part of me died with him. My heart has been cleaved in two. I’ll admit to often wanting to join him, but when we’d had end of life discussions Rich had made me promise that I’d go on and make our plans happen, plans to help others living with disability and conditions such as NF2. That promise is enough to keep me from acting on the darkest thoughts, and when necessary to reach out and tell someone that I’m really, really struggling.
The walking and swimming, are very much a part of operation ‘why should I stay alive today’. When I’m in the wilds, I feel physically close to Rich. He’s there with me. Going back to our special places and retracing our walks, or completing walks we’d planned, gives me a reason to face each day. Walking in the wilds also allows me to grieve and mourn actively as there’s rarely anyone else around, and the exertion releases emotions and feelings that might otherwise stay locked away. Think you can’t cry walking up a steep hill? Think again.
So for the last few months I’ve been walking and wild swimming all over the UK, and will be spending the forseeable future doing more of the same. Eventually I’d like to take ‘travel sized Rich’ to our special places overseas, but I’m not yet ready to face airports or long flights again. As those of you who’ve experienced out of order bereavement will know, such things become even more of an assault on the senses, when we have to constantly assess who might be a ‘safe’ person, and who might dismiss our pain.
If you’d like to walk with me to talk about the loss of your soulmate, or a special person who’s gone decades before their time, along with your shared love of certain landscapes, please get in touch. I’m happy to travel to any wildscapes, including those that require a ferry journey.
Lots of love, Hayley x
Good company in a journey makes the way seem shorter. — Izaak Walton