I was born in October, 1971 and grew up in a loving family in the beautiful Dandenong Ranges, on the edge of Melbourne, Australia.
As a little girl, I used to love being outdoors and especially climbing trees. My parents house sat on top of a hill with expansive views, and I would spend hours in the upper branches of a large chestnut tree looking over the roof of our house to the distant hills beyond. This feeling of openness and space always gave me a sense of freedom and possibility.
While we spent time in the forests next to our house, we were not the sort of family to head out camping or to really rough it in the outdoors, and I was not really a very sporty sort. We did, however; take an annual trip for a week each summer to Thredbo, a ski resort in NSW, and for a week each winter to Falls Creek, a ski resort in Victoria. Just as I loved sitting high up in our chestnut tree, I absolutely loved these trips and the time spent up above the tree line, in our Australian high country.
I really did develop a love for the mountains during this time, and when I was about eight, after admiring a painting of a mountain which may have been the Matterhorn, and some books on mountaineering adventures at my grandparents house, my grandpa gifted me a little brooch with an ice axe and mountaineering boot, and from this I believe a seed was sown- one day I wanted to become a mountaineer!
While I had been a happy go lucky little girl, in my later primary school years I was bullied severely (I was a somewhat gifted child academically, which did not bode well with some of my less academic classmates and they reacted to this by being rather physical). Entering into high school, I had lost a lot of my childhood confidence. After a couple of years of struggling to fit in as the ‘nerdy’ teen in a more football and netball centric local high school, to find social acceptance, I tried my best to dumb myself down and instead play more of the role of rebel teen. This certainly played off in the social stakes, however; ultimately led me down a path that saw me making some rather questionable choices, including dropping of out school in 1989, only a few months into Year 12.
The next months were spent finding numerous ways to act out of accordance with social norms- my friends consisted of skin-heads, graffiti artists, punks and numerous other young people seeking to find ways not to conform. Beyond hanging out with these non-conforming friends, I never really did find any sort of truly rebellious identity myself, and after spending most of what would have been my Year 12 year trying to find a non-confirming pathway and just being quite lost, I ended up returning to finish my schooling.
My mum, no doubt sporting many more grey hairs after my rebellious year, came across an ad for a vocational Year 12 course that was based upon outdoor education and involved engaging in a range of pursuits and classes that related to hands-on learning, and this opportunity served as a life-changing opportunity for me. Starting out in this course, with the exception of skiing, I did not feel confident in my physical abilities at all, however; over the course of the year we were introduced to rock climbing rafting, kayaking, canoeing, bushwalking, snow camping and other activities, and over the year I found the confidence and self-assuredness I had carried as a child starting to return.
I went on the next year to spend a year working as an outdoor education assistant at Ballarat and Clarendon College, in country Victoria, and then continued on to study a Bachelor of Arts (Outdoor Education) at LaTrobe University in Bendigo, and finally found what felt like my true self again after a good few years in my teens of really lacking any sense of personal identity.
I particularly fell in love with rock climbing and ski touring, spending many weeks in summertime camped out at climbing areas, and many nights in the winters in a tent in the snow. I began to read stories of different adventurers and explorers, and I also often looked at the little brooch my grandpa had gifted me and my dream to mountaineer grew stronger and stronger.
I spent a few years working in the outdoors taking young people bushwalking, ski touring and climbing, and I loved seeing their confidence grow just as mine had so significantly when I was re-finding my way a few years earlier. I also spent time teaching skiing in Australia and in Colorado, and continued to feel a real sense of freedom and possibility up in the mountains.
In 1996, I took a trip to Nepal, and I spent a magical night staying near the Ama Dablam base camp and experiencing the sheer joy of a group of mountaineers who had summited this majestic mountain the day before. Looking at this amazing peak, I knew that one day I wanted to come back and experience the sheer beauty of the Himalayas from atop this special mountain.
Nepal in 1996 with Everest in the background (me in the centre).
In 2001, I became a mother, and in that moment, my dream of becoming a mountaineer and climbing high and challenging peaks lost its shine. I remember watching a film of a woman climbing K2 and nearly dying, and thinking to myself, “well she must not be a mum”, and realising that while I had always had the vision of climbing myself, I most certainly did not want to risk my life in any way.
Over the following years life was interesting and adventurous and I brought three wonderful humans (now 21, 17 and 13) into the world, worked in numerous outdoor education and schooling settings and experienced the world with my children, living in different states and countries including the USA, Vietnam and South Korea, and travelling to many more.
My dream to mountaineer lay dormant through much of this time, until in 2008, after the birth of my youngest, and while living in Colorado, I became unwell, and there was the mention that I may possibly have MS.
I had experienced a few strange health episodes in previous years and had often felt that I was a bit of a hypochondriac, as frequently had some degree of physical discomfort or fatigue. After coming down with a cold, I spent several months in 1995 barely able to walk. Doctors could not pinpoint any real cause, and as I was in my final year of my outdoor education degree and scared of becoming completely sedentary and not being able to finish my degree I decided to get up and going and headed off on a ten day ski tour and this brought me back to life.
In 2003 I was hit by another strange bout of fatigue and at this time was diagnosed with chronic fatigue syndrome. Just prior to this diagnosis, my then husband and I and our two year old daughter had accepted a position to run a very unique outdoor education centre called Wollangarra (www.wollangarra.com) and so decided to moved our lives out to the bush, and I was again brought back to life.
Over the years between 2003 and 2008 I experienced a few more strange symptoms, such as warm or tingling sensations on my skin, and some episodes of fatigue, and then in 2008 after my third child was born I suffered an episode of double vision for a couple of days, and extreme dizziness that lasted for about six weeks. An MRI showed a single spot that a neurologist thought may have been a single lesion (see the page on MS for more information on lesions).
From 2008 until 2018, I saw a number of doctors and neurologists, and had a range of tests including CT scans, MRIs, spinal taps, neuropsychological testing and blood tests. No-one could definitely offer a diagnosis and vasculitis, small vessel disease and multiple sclerosis all seemed to be possibilities.
Over time, I had noticed that my memory was not quite as good, and sensory symptoms were increasing- my tongue would often feel like it was burning, my vision would blur or become double at times, and fatigue would come and go. Nearing my late 40s, so much of this could be attributed to menopause approaching, and also to any number of other conditions, and so its not uncommon for MS to be very hard to diagnose.
It was a routine MRI - something I had started to have annually in an attempt to work out what was causing increasing small white spots on my brain to show up - that led to my eventual diagnosis. This MRI noted the white spots from previous scans, but this time also had words including congruence and progression that led my GP to send me back to a neurologist ,and within weeks I was officially diagnosed with MS, over ten years after this had first been suggested.
Throughout my long journey towards this diagnosis, I had only every really felt truly upset once, in 2008 at the first suggestion that I may have MS- having just had my third child, and not knowing a lot about MS apart from that we did a readathon at school to help raise money, and remembering meeting a friend of my parents when I was a child who had been very sick and could not walk or feed herself, I had no idea what it really meant to have this illness so it did scare me to have a medical professional suggest I may have MS. However, this was momentary, and I then decided that I could accept whatever my fate was, so long as I could find some purpose and motivation through it, and so in 2008, I decided that if ever I was actually diagnosed with MS, I would get out and climb a mountain and do what I could along the way to raise funds to somehow help others as well.
Over the years it took to finally be given a diagnosis, I learned a lot more about MS, and by the time I was actually diagnosed, I understood that it was not a death sentence, that it could be life altering, that it may shorten my life span by a few years, that there were new drugs emerging all the time to help slow and perhaps even prevent progression and to manage symptoms, and extensive research going into ways to promote re-myelination of damaged nerves and hopefully to one day fine a cure.
I started on an injectable medication called Copaxone immediately on my diagnosis and for the next few years I gave myself injections three times a week to try and prevent my illness from progressing. During this time I had a couple of episodes of extreme dizziness and fatigue, each lasting about six weeks, that would have been debilitating were it not for my stubbornness to push on and an MRI in early 2021 showed my MS was still progressing in spite of this medication.
I felt quite devastated to learn this, as at the time of the MRI I had been feeling really fit and well, and the thought of having to start a different medication that would likely cause more extreme side effects, or let my MS keep progressing felt quite disparaging. I asked my neurologist what he felt the outlook may be if I opted to not start another medication, and he advised that based on my lesion loading, it was likely I would need to use a wheelchair in 3 - 4 years.
I did a lot of reading on medications and decided that I would start a new one called Tecfidera, and hope that this would keep me progression free for my foreseeable future. I also decided that, given my MS was progressing, it was time to realise my dream of becoming a mountaineer and also help fundraise to help others with MS in some way too.
And so my dream to climb mountains moved from something I hoped to do one day to something I was committed to doing as soon as possible, and now here I am, telling my story, planning my next trip and continuing to raise funds, and I could not feel more excited or more grateful to have this amazing opportunity to follow such a special dream! I invite you to share in my journey through following my blog on this site, coming along to fundraisers, donating to MS research and the Forum for the Welfare of Himalayan Children, sponsoring me, or simply meeting up to learn more about life with MS and my grand adventure!
With deep gratitude,
Jen Willis
