I never had a desire to travel the world. I suppose I was naive to what lay beyond our shores. But then, at the age of 19, I found out that I was going blind.
The diagnosis was completely unexpected. I had made a comment at a routine eye check-up that led to a series of tests and then, the news. Within a month, I went from having never heard of Usher Syndrome to being categorized as legally blind with severe tunnel vision and night blindness, both of which will continue to deteriorate. Whether or not I will lose all of my sight is still unknown and unpredictable with this condition.
Upon diagnosis, my first reaction was to just accept it. It sounds simplistic, but it is truly what I did. It did encourage me to re-evaluate my lifestyle, though. Soon after, I left university and eventually shifted my aspirations away from having a professional career and toward having rich, perhaps non-traditional, experiences instead.
Although I remained positive, I began to notice changes in myself. I became anxious as the day came to an end and darkness approached. I questioned life directions more. I developed a fear of being rejected by potential friends due to my disability. At each stage of deterioration, and with each new subsequent diagnosis, there is more adjustment, more grieving, more resting before re-emerging in a new way. I constantly have to work with myself as this process continues and as my abilities and comforts change.
Soon after the initial diagnosis, my uncle bought me a holiday to Bali for “being a courageous kid”. It was my first trip overseas. I made friends with other travelers and they looked after me when crossing the road and we shared laughs at the physical traps that lay in our path. This trip, and another a couple of years later, filled me with gratitude – I felt so lucky despite all the challenges I was facing. They also spurred my wanderlust; suddenly, the knowledge that I was losing my sight became the catalyst for a desire to see the world. I wanted to do as much as possible before I no longer had the chance.
Now in my mid-30s, I have a decent set of travel memories created since that shock diagnosis. In fact as I write, I am sitting in a temporary abode in the Swiss Alps, resting sore muscles from a strenuous hike. Outside the window, snowflakes are falling.
I am traveling the world with my husband and realizing the grandest and simplest dreams, seeing as much as we can, while I can, and noticing other sensory input with full appreciation. I have a partner in life who wants to experience it all with me, and who gives me steady support to reach beyond the familiar. This year, we packed up our home to embark on our longest holiday yet: 200 days exploring Europe, the UK and wherever else our adventure takes us. Before we departed Australia, I had developed a strong itch to break free of our home for a while. I had recognized an increasing struggle within myself and knew that if we didn’t do this trip, I was at risk of falling into a comfort zone that I might never emerge from. Now, we are nearly halfway through our journey and I am so proud of myself for being honest and facing these fears. It’s exhausting and sometimes stirs up complex emotions, but to know that I’m doing something so enriching pushes me to keep rising to it.
Traveling as a vision-impaired person means remembering to laugh. I giggled when I confidently told friends “there was no doggy-do in Paris”, only for my husband to gently interject and say “darling, you didn’t see any because I was steering you around it!” I made fun of myself when, albeit fit and healthy, the elderly Italians overtook me walking down the thousands of steps on the Amalfi Coast as I could only see one step at a time. I chuckled when a self-portrait showed me stumbling over the only log to be found on a deserted black sand beach in Iceland.
I celebrate the beauty seen in my limited vision through the camera lens and within my husband’s photos. To share a love of photography is not only a symbiotic pursuit as husband and wife, it is truly a gift for me. Through his images, I see more of what is around me, framed in a different way. In Iceland last year, I could not see the Northern Lights. I stood utterly blind, holding onto the tripod as my husband created images of the swirling phenomenon above. I listened to others moving freely in the dark on top of this icy cold, windy mountain and experienced a moment of deep sadness as I remembered just how blind I actually am.
But these moments do not linger for long, because I prefer to focus on what I do capture for my own daily joys and memory bank, and for sharing. The joy of eating food, smelling the surroundings and feeling my body move through a foreign place is addictive. I have expanded my taste buds by trying new foods and forming strong associations between that first taste and the location – a hot chocolate with cream on top immediately transports me back to the town of Capitola in California where I felt the hot cocoa slide through the cold cream to my lips. It was a chilly night and the sand was just inches from my feet. I feel myself taking in the world with more sensitivity to smell and walking around a city gives me an up-close exposure to them. Conversely, these sensory triggers also bring home around the world with me – when I hear a deep bark, for example, I think of my adorable guide dog at home (enjoying days of retirement “gardening” with his grandparents!). My experience of a place is not on the grand scale and is devoid of what many others sense, but the little moments, scenes within my tunnel vision, sensory experiences, emotions and thoughts, and connections with people and animals are my stories. I realize how different my experience of these places and activities can be. But they are no less meaningful.
It is through the generosity of other people that I also see more. In South Africa, my sister-in-law told me to look down from our open-sided vehicle. In the glow of the tracker’s torch, I looked straight into the face of a beautiful lioness just beyond arm’s reach. I held my breath, the only thing between us, and tried to squeeze every bit of sensory perception from it. To think that this is what I am filling my mind with as I lose my sight; I am so lucky!
I deeply value interactions with people (and cute fluffy animals) when we travel: the resplendent smiles on the faces of the Shangaan tribe as I fumbled my way through a few words in their language; the new friends who link arms and with utmost acceptance and help me navigate foreign surroundings; the strong, courageous, elderly Italian olive farmer who spoke no English but cried and hugged me goodbye many times.
In this journey so far, the tears have fallen from my own eyes once or twice. I have been overthinking as I step outside of comfort zones, worn bruises and pain from collisions, and felt absolute exhaustion. Yet I have also adapted far beyond what I thought I could, felt immense pride, valued my imperfect but capable body, and paused often to remember I am achieving my goals to grow. Every day, I look at my husband and am thankful for his dedication and patience; he makes these adventures possible. We are a team. Then I think of our loved ones at home and I feel so enveloped in this cheer squad.
We do not know what the future holds for my deteriorating vision and yes, sometimes that scares me. But I do know that standing still and not experiencing life, not loving people or not traveling is truly frightening. Love, family, connection with other cultures and people, new tastes, stunning views, excitement and cheesy grins, a feeling of belonging in foreign places, walking amongst history, seeing the origin of food and traditions, snow fights, cuddling animals, uncontrollable giggles, tired muscles and hilltops reached, creating memories, listening and learning, understanding beyond the superficial, and personal growth; I am losing my vision and yet I can’t help but feel like I am seeing all that matters anyway.