“This year is potentially my last before death. I decided to do what I love most: climb.” Six years ago, mother of five Lindsay Jarrett (42) was diagnosed with an incurable genetic condition. She tells Sarah Stirling why she has decided to come off her supportive meds, let nature take its course and try to climb as many routes as she can.
I live in the Highlands where I was born and raised, surrounded by mountains and water. My playground as a child was Poldubh Crags in Glen Nevis, Fort William. Despite visiting them repeatedly - now with my own children - I never tire of them. My favourite climb is Storm, HVS 5a. It was my first HVS multi-pitch lead.
I started climbing aged seven. My father was a mountaineer and Mountain Rescue Team member. I spent all my summers in the hills and developed a deep love for them. I was affectionately known as ‘The Walking Rucksack’. From very early on, I was often carrying a large climbing rucksack and you could only see my legs sticking out the bottom!
I started having breathing problems in 2008. I’d just had my fifth child. Doctors couldn’t understand why my lungs were behaving like someone who had smoked all their life: I’d never smoked. Eventually they diagnosed Alpha-1 Antitrypsin Deficiency.
Without a double lung and liver transplant I will die. My lung capacity is around 25% and I’m oxygen dependent. One infection would put me on life support. It’s as fragile as that. Lung transplants are not often successful, though, even if I could get one. It’s not like kidney transplants; it’s much more precarious.
There’s currently no cure for Alpha-1. Augmentation therapy is available in other countries; it involves weekly infusions of human plasma. This prevents decline, negates the need for a transplant and prolongs life. In the UK this is not an option. I moved to Belfast to access a medical trial of a version of this medicine for a year.
I had to try. I owed it to my five children aged 25, 18, 9, 7 and 6. The eldest has my lung condition and is at present quite poorly but despite this is running the Belfast Marathon in May for charity.
My other four children all climb and the three little ones also have my condition. Mia, the 9 year old, is an exceptionally talented climber, already leading competently and competing in indoor competitons.
I took my two youngest children with me to Belfast: it was horrible to separate the family. I flew back every second weekend. I was extremely poorly throughout the trial. I wanted to give up many times but there was no other option available.
I came home in May 2013, in a wheelchair, unable to carry my own oxygen supply. I was on morphine and many other medicines in an attempt to combat, although not cure, my symptoms. It seemed only a matter of time before my body would give in. I was weak and struggling to breathe.
When I returned home I found it unbearable to be amongst the mountains with the thought that I would never climb again. That’s when I made a bold decision. I thought deeply about the fact that I should allow nature to take its course and opted to detox from all the supportive medicines. After all, none of them were a cure.
My father instilled a 'never give up' mentality in me from an early age. I knew that mentally I was strong. Perhaps it was slightly arrogant of me but I believed I could climb one last time. I felt I had to.
I live close to the Ice Factor - the largest indoor ice wall in the UK - and started visiting most days in my wheelchair. It also has additional climbing facilities. With encouragement from the lads there I took steps towards climbing again.
I had sold all my gear the previous year as I was not expected to live as long as I have. Big mistake! The guys stripped their own kit and muddled together enough for me.
I then started going to the gym and found if I did that first, it opened up my lungs and I climbed better afterwards. All the while, I was still attached to oxygen but now I was walking about and carrying it myself.
No wheelchair and no unnecessary drugs in my system. I felt alive for the first time in a very long time. My lung capacity is so limited that when I exert myself, my heart rate rises phenomenally. It was a powerful mind over matter exercise. I soon began flying through grades at the indoor wall.
It was scary and it was sore on my lungs but despite this I felt amazing. Happy, at one; on a journey of living and not a journey towards death. This was what life was and had always been about to me: climbing.
The hardest part was watching everyone going out onto the rock and knowing I was not strong enough. Besides, my oxygen would run out as the system is not geared for activity. I am supposed to live a sedate lifestyle indoors in front of the TV. Not going to happen!
I didn't give up. I couldn't. I wanted it too much. I continued to train all through the summer and combined it with the gym and short hill walks. Again it was tough: I frequently stopped breathing for short periods, was sick and felt like I was going to have a heart attack.
As the year came to an end I went with the lads to the Scottish Tooling Series. I loved it! I wanted to do it! Once again, the boys loaned me kit, taught me and coached me. I took to it naturally and became a tad obsessed. I ended up tooling constantly for around six weeks.
Over the year I discovered that being in the Ice Wall was great for my breathing. When poorly I sit in there with a chair and an oxygen tank! On this basis I decided to get back on a snowboard too. I figured the cold was good for me.
My children are immensely proud of me and happy to see me full of energy! My oxygen system is very poor as it is not geared up for an athlete. As a result we have had to adapt things and do what we can. This means that crags with short walk-ins or roadside are optimum because otherwise I would use up all my oxygen on the walk-in.
Lots of UK crags have short walk-ins. It made sense to me to experience as many as I could. I wanted to fill my soul with the feel and smell of climbing outdoors before the inevitable happens.
The next step was to look at the opportunity and see how I could help others along the way. From May to September, I want to climb as many crags as I can in the UK. It will be hard and it will be sore but if you give up mentally, then your body gives up too. I want to raise awareness about Alpha-1 by doing my sport and also raise funds for Climbers Against Cancer.
My dad died of cancer, so it’s close to my heart and there’s not one of us who hasn’t been touched by cancer. Once I’ve done all that, at the end of the year, I’ll put myself back on the transplant list.
I was approached by Berghaus and DMM. They wanted to sponsor me on the basis that I climbed to a high indoor standard while on 25% lung capacity and carting an oxygen tank with me!
I wanted my children to have a huge impact memory that taught them the simple lesson my dad had taught me: never give up. This seemed the perfect way to me. If I do pass away, my children will be able to say that their mum pushed herself to the limits, and never gave in.
I love Tremadog in North Wales and am very excited about getting down there in the summer. It would be awesome to do Unbeatable Vector (E2 5c) again. Little Chamonix (VD) in the Lakes is also a favourite and one that I can’t wait to get Mia on this summer. Not a hard climb but it's fun and I think she will love it. Again Shepherds Crag in Cumbria is ideal, as there’s little or no walk-in so less use of oxygen.
The pressure on my lungs is harsher the more strenuous the climb. I think this journey will be quite emotional as I revisit and realise that this time round things are very different with a disability. I am not sure how to prepare for that.
Lindsay aims to be top veteran at the Scottish Tooling Series this year and is raising money and awareness for Climbers Against Cancer through her climbing.
Read more about Lindsay on her blog.