First Published, 25th May, 2014
I always use my blog to write about myself and my own experiences. I talk about other people who are part of this but I haven’t yet written a post dedicated to someone else’s story.
I want to change this because there are so many inspiring people out there who influence me and motivate me to train. One of these people is my amazing cousin Henry.
Henry suffers from a condition called Friedreich’s Ataxia, which he describes as:
“a progressively worsening neurological condition with no known cure or treatment. It breaks down the body’s movement capabilities – every bodily function from walking and talking to sight and hearing is meant to deteriorate.”
This is his journey through disability, movement and creating an amazing life for himself…
Friedreich’s Ataxia, or FA, is a double recessive genetic condition that affects the myelination of the nerves resulting in poor nerve conduction, which then reduces strength and control of the muscles and reduces physical sensation and proprioception. This leads to weakness, a loss of balance and ataxia (a lack of control of movements). No two cases of FA are the same and there is no recognised medical treatment.
Growing up Henry experienced symptoms which became increasingly worse as the illness progressed. This included urgency incontinence, a gagging/reflux urge and scoliosis, which is an abnormal lateral curvature of the spine. He also struggled with coordination and eventually lost the ability to walk. Due to the development of his scoliosis he was being advised by his doctor to have spinal surgery, which involves fusing the vertebrae together to prevent further twisting. This would have rendered Henry immobile as he would have no longer been able to move his spine in any real way, which would have further reduced his independence.
There were other things that Henry had to contend with like coming to terms with the illness and what it meant for his future. He went through intense denial after he was diagnosed at age 9, which meant he took no action to help his condition. He was socially withdrawn and was subject to bullying, which resulted in losing all confidence. He focused hard on his schoolwork as a way of escape.
Henry began body building at age thirteen. With poor self-esteem, weighing only six stone and faced with the prospect of spinal surgery he decided to try it after watching a body building documentary.
“I felt as though I had nothing to lose and everything to gain. I wanted to build up my body to be as massive as I could – to be noticed, to be attractive and to look strong.”
His training was all about dumbells, machines and the biggest weight he could handle. He was consuming as much food and as many supplements as possible, not caring where the calories came from. As well as wanting to achieve aesthetics he wanted to prove to the people who had been so negative towards him that he could be a strong and worthwhile person. He wanted confidence. However, the developing obsession with muscle size meant that Henry started to lose flexibility and mobility, and was restricting all other movement for fear of burning extra calories. At this point in time size meant health. He spent six years following body building diets and training and gained five stone. Even though he had achieved size his self esteem was still low.
Three things happened to Henry that changed his entire approach to training. He lost an arm wrestle to a female gymnast. He got knocked out of his wheelchair when it got hit by a slowly reversing car. And then he attended his first yoga class, which he felt was a complete embarrassment as it further highlighted the lack of core strength, functionality and structural integrity of his body.
“I was aesthetically pleasing but that was nearly all my muscle was good for.”
After these events Henry began to focus on regaining function. He started using yoga and meditation to reconnect with his body and to be able to start listening to what it needed. He felt he wanted to move away from isolation and the imprisoning body building routines he had so religiously followed. His changing attitude towards his physical health was hugely influenced by great movers, and one in particular, Ido Portal. Ido inspired Henry to start engaging in new forms of movement.
“I craved martial arts, swimming, climbing, archery, body weight exercises, flexibility, scapular mobilisation – MOVEMENT.”
Another change that Henry made was his diet. He moved towards a paleo style of eating, becoming far more conscious of his nutrition and how he fueled his body. He has cut out lactose, gluten and processed foods. Since he began this way of eating over a year ago his body has responded positively with his immune system and energy levels increasing. This is so important for him as he spends up to five hours a day training!!!
Regaining control of his body and focusing on quality of movement has changed Henry’s life in so many ways. Physically he is far more capable. He has reversed his incontinence and corrected his scoliosis, both a result of improving his core strength. He has improved his flexibility, his range of motion and overall strength. He is working on so many areas of movement, exploring as much as he can, from boxing to Yoga, and even climbing. His goal to push past his limits is what drives him to explore as many varied motor patterns as possible. Size is still important to maintain but it is no longer his only goal.
As well as hanging to keep his spine healthy, one of the most important movements he trains daily is a flat foot squat, which he feels is the gateway to being able to walk again… How many people can achieve this depth?
Looking at what Henry can do is so inspirational for me. It shows that it doesn’t matter what your situation is, you can always be better. He has proven his doctors wrong showing there IS ANOTHER WAY. This has been a long journey for Henry, where he has had to work as hard as he can to achieve the body that he has. It took six years of constantly eating and lifting huge weights for him to gain 5 stone. Now his goals have changed but it will continue to be a challenging process.
“This is slow, dedicated, often painful work – there is no shortcut to success.”
The other result of Henry’s journey is how it has influenced and changed him as a person. He doesn’t look for sympathy or sit around complaining that everything is too hard for him. He has developed courage, discipline, determination and tenacity. It has hugely improved his confidence and self esteem. He applies the willpower created through getting through each workout to every aspect of his life. Along side his training he studied at University and completed a degree in Chemistry. But movement is and always has been his passion.
One of the most important things Henry has learnt is how to take on any situation life throws at him and make the best out of it. So many people are afraid of making changes and putting themselves through discomfort but Henry has done this in order to create the best life he can for himself.
“The only way you can overcome any obstacle in your path is to turn, face and accept it. I feel now that denying FA’s existence to myself was a bad move. I really believe I LET my condition deteriorate through my own denial, and therefore inaction.”
The symptoms of his Ataxia may never be fully reversed and FA affects him and those around him every single day, but it doesn’t stop him doing what he loves. It’s a lot to contend with for him but he still gets up every day and works hard to strengthen his body, improve his ability to move and continues to be an amazing person. I am so proud of everything he has achieved and to have grown up with him in my life. I look to the example he sets, and it inspires me to train harder every day. No matter what your situation, there is NO EXCUSE not to take care of your body and be the best person you can be.
If you are interested in reading more about Ataxia then please visit http://www.ataxia.org.uk/
I want to thank my Aunty Felicity, Uncle Rupert and of course Henry for helping me write my article – It was a team effort!