by Genevieve Brown
My story begins on an ordinary weekend in late February 2014. I hadn’t scheduled anything major that weekend because I knew I’d be washing and combing my hair, and as any black woman with a thick afro will tell you, this task requires time and patience.
As I rinsed the conditioner out of my hair, I happened to glance down, and to my horror, I discovered that masses of my locks were on the floor of the bath. I quickly reached up to feel my scalp and found a large bald patch near the front of my head. I was sufficiently distraught to make an emergency appointment with my local general practitioner (GP) on the following Monday. Given that I was rarely ill since registering with the surgery, I’d never actually met any of the GPs. So, when I walked in and noticed that this particular GP was wearing a toupee, I was relieved and thought that he’d be sympathetic to my sudden hair loss.
Instead, he listened distractedly as I described how my hair had fallen out and then proceeded to explain that since I was young and didn’t seem to lead a stressful life, it was probably dandruff or dry scalp and that I should just get some anti-dandruff shampoo. He quickly ushered me out of his office, and I was too shocked at this confusing and rushed diagnosis to put up any kind of argument. This encounter marked the beginning of a harrowing three-year period of misdiagnosis and medical gaslighting.
My health quickly deteriorated after that as I began to acquire a strange set of symptoms that I simply couldn’t explain, mainly:
- Severe fatigue bouts
- Brain fog
- Aphasia
- Memory loss
- Anxiety
- Depression
- Night sweats
- Joint ache
- Fevers and chills
My life spiralled out of control, and I felt like I’d fallen down a dark hole with no way out.
It felt like I was being sent from pillar to post as many of the GP’s and specialists that I was referred to simply didn’t believe or understand my symptoms. Some told me it was all in my head, and others that I’d be on antibiotics for the rest of my life. My life spiralled out of control, and I felt like I’d fallen down a dark hole with no way out. I was signed off work for a period, as I struggled with even the most menial tasks. As time went on, I lost connection with many friends and for the first time since moving to London in 2008, I felt truly lonely and abandoned.
So, when in 2016 – after 3 years of hell – someone suggested I go see a Naturopath, and I was game. During our first consultation, the Naturopath went through my entire medical history since I’d moved to London, and her first comment was “why haven’t they tested you for Lyme Disease?” It seemed pretty obvious to her that it was the most likely cause of my illness, so we decided to test for this first.
When the tests came back positive, I embarked on a yearlong intensive treatment plan. There is currently no cure for Lyme Disease so the best I could hope for was some sort of remission, managed by adapting my diet, regular detoxes and managing my stress levels.
What really struck me was that rather than feeling elated at finally figuring out what was affecting me, I sank into a deep depression. It was as if I came crashing down under the realisation that I’d been carrying a massive weight of uncertainty and misdiagnosis for 3 years. So, I started seeing a therapist to work through all the emotions I was feeling. It was during one of these therapy sessions that I realised that I could either become bitter at the medical professionals who had failed me, or I could do everything in my power to raise awareness about this debilitating disease.
From London to the South Pole
The idea to ski to the South Pole first came to me when I was introduced to Doug Stoup, one of the world’s leading polar explorers, at a work event. I shared my story, and he immediately encouraged me to consider doing an expedition in the Antarctic to highlight the difference that correct diagnoses and treatment had on my physical abilities. After all, to go from sleeping for 18 hours a day and needing care to skiing to the South Pole in the harshest conditions on the planet would be pretty epic!
I could never have imagined just how much my life would change after that! I was born and raised on the Dutch Caribbean Island of Aruba, and doing any kind of cold adventure seemed completely out of my comfort zone. However, I’d been granted what felt like a second chance at life after Lyme and I was determined to make the most of it!
I’d initially planned to cross-country ski from the last degree to the pole, covering 120km in a group. But over the years I decided to change that to a solo and unsupported expedition, skiing 1200km from the coast to the pole.
During the expedition, which can take up to 45 days, I’ll be pulling all my provisions weighing 80 – 100 kilos in a sledge without any assistance. To prepare for this, I’ve sought out people with specialist polar and ski skills, as well as trainers and coaches who understand rehabilitation and training after chronic illness. Currently, my dream team consists of a personal trainer, various ski coaches and mentors, as well as a masseuse, physiotherapist, and nutritionist to ensure that I can keep my Lyme fatigue flare-ups to a minimum whilst building my strength and endurance.
My training year is typically broken up into 6-month cycles. During the autumn/winter cycle, on weekdays, I’ll start out with a 4:30am, 2-hour strength session at the gym. The best way to train the body for the intensity of sledge hauling is to practise by pulling tyres in different terrains. I do a few short 1.5 hour-long pulls during the week and a long 6-8 hour pull at the weekend. Each day I also spend an hour in the evening doing recovery work such as stretching, yoga and Pilates. In the spring/summer season, I swap out the tyre pulling for running and roller-skiing whilst maintaining my strength training and recovery regime.
Because I live in southern England, with mild winters, I tend to go to Norway as much as I can during the winter months to build up my cross-country ski, winter camp craft, and polar survival skills. To date, I have completed a winter polar basic skills course, 2 week-long group expeditions and 1 solo mini-expedition. Next year, I plan on doing a ski-refresher course, as many weekend solo ski and camp trips as I can and most importantly, a 3-week qualifier expedition to be allowed to pursue my solo endeavor.
At present, my aim is to head to Antarctica in the winter of 2024/2025 to complete the expedition. I’ll fly to a base camp in Antarctica where I’ll spend a few days acclimatising and doing last minute dry runs.
When the weather is amenable, I’ll be flown to my agreed drop-off point where I’ll be left to navigate and ski to the South Pole. To be able to do this I will need to raise a significant amount of funds from sponsors to cover the cost of the specialist clothing and equipment required for harsh conditions, my training and qualifier expeditions as well as the logistics fees for the actual expedition.
Lately, I’ve found myself reflecting on just how far I’ve come since being bitten in the Autumn of 2013, and I realise that this isn’t just about overcoming Lyme Disease anymore. It’s about representation and the importance of inclusion and diversity in the adventuring world. It’s about inspiring and encouraging others to pursue their dreams regardless of their circumstances. Most importantly, it’s about not allowing other people’s limiting beliefs to restrict what you can or can’t achieve!
Fundraising has proven to be the most challenging part of the expedition so far, but I have enjoyed the challenge, and I truly believe that I will get the funds in time to achieve this amazing goal!
Genny Brown is aiming to be the first Aruban and Black woman to ski solo and unsupported to the South Pole to raise awareness about Lyme Disease.
