With his refined and cheerful English demeanor, Simon Henson has a clear message for those who have experienced a loss of mobility “Don’t look back, look forward.” This advice isn’t from a man who believes in ‘keeping a stiff upper lip’, remaining stoic, and avoiding a display of weakness, but rather from an individual who truly feels the only way to show courage and resolution in the face of adversity is to look forward. If you look back, according to Simon, you’ll regret what you’ve lost and not see all the things you can do. Taking a step into your new life can give you hope and inspiration as you rediscover your capabilities, but you often need help in this journey onward.
Like many who are confronting tremendous loss, deep sadness and depression set in when Simon least expected it. Two years post amputation, Simon sought out the counsellor he met during his hospitalization. “I was wondering when you were going to come in,” she said, “You must deal with your problems to be released from them.”
With guidance, Simon is ‘getting on with life.’ He is very active and enjoys yoga, going to the gym, biking and has even started a Facebook group called, ‘Club HQ’ (hind -quarter). That is the level of amputation Simon lives with, as do I. It’s a group of 50 members who have a rare high-level amputation (missing 3 joints) as a result of primary bone cancer. New members can get support from more sage individuals living with this type of amputation, share stories and meet once a year. Simon also volunteers his experience of disability with various organizations such as The O2 and LondonUK airports. He provides insight to ensure that treatment is compassionate and buildings are accessible. He has some surprising stories to share.
In ‘getting on with it’, Simon continues to step forward and welcomes a challenge. He is naturally motivated by discovering what he can do. And from my view across the pond, that’s a great deal.
Tell me about your journey as an amputee
It was an interesting period when I first had my leg off, which was all very sudden. I went in on a Thursday to have my hip resurfaced, and then two Tuesdays later, I lost my leg, hip, and pelvis. They found a pelvic chondrosarcoma, so there wasn’t any sort of run-up to it. At that point, I was in such pain, and it built so quickly, that I would have been very happy if they had taken both my legs off. It was emotional when I was first told, and after that, something kind of kicked in and then I just decided I had to get on with it.
It was a major operation; I had 25% of my body removed. It was just a bit scary, and then when I came around, the fact that I was not in pain anymore made a huge difference.
I think initially, everyone says you’re going to have a completely new view of life, and this is going to change your attitude completely. I think it did at first, and then afterwards I went back to being the same person I was.
Do you find support within the amputee community?
I was fortunate to have a great mentor who sadly is no longer with us. My brilliant surgeon, Professor Robert Grimer, asked me to start this club called Club HQ. We’ve all had a hindquarter amputation, when you lose the whole hip and leg, and maybe a bit of the pelvis. It started slowly and now we have about 50 members. We have a Facebook page where people communicate, and I think the best use we have is that when there’s a new amputee, they can come on the page and ask all sorts of questions about phantom pain, body dysmorphia, prosthetics, wheelchairs, crutches, and everything else. Otherwise, there’s really nowhere for them to find that information. We meet once or twice a year for lunch, and everyone chats away and makes friends. It’s been a really good network because, as you can imagine, you don’t otherwise come across many people like you. You might think that you are one of the only people around who has had this very unusual amputation.
Did you suffer from any emotional distress after your operation?
It’s quite debilitating being in the hospital for 4 weeks; you lose something like 25% of your musculoskeletal mass. From having been pretty fit, I became very unfit, and then of course the matter of getting fit again takes a lot of time, and you have to do it in a different way.
I didn’t think I had any emotional problems until about two and a half years after my amputation. I felt really bad, and I didn’t have any problems with my family or home life or anything like that; I just felt really negative and down.
I went to see a counsellor – the counsellor who had seen me when I first had my leg amputated – and she said “I wondered when you were going to come”. I said “Why is that?” and she said “Because you never accepted that you had cancer. Whenever I mentioned it, you always put the shutters down, so you’ve never emotionally released that problem”. We talked for two or three sessions, and then I was fine. I think we’re all badly affected, but we show it in varying degrees.
There are two levels: People either get on with it and say “why make this the focus of my life?”, or retire to a chair and make a minimum effort at rehabilitation. Some people take the latter course. I think people can be inspired to do things because you can play wheelchair basketball, or tennis. One Irish Club HQ member is doing a two kilometre swim for charity, and I think a few of us are going to go to Ireland to support and watch her.
The thing is, you have to go forward. The important this is to not look back and regret what you’ve lost. You have to look forward and celebrate what you’ve got, because if you look back, you develop an entirely negative outlook, and it makes you very unhappy. I could beat myself up about the fact that I can’t do the things I used to enjoy, but actually, I just do my best to look at the things I can do.
Do you feel any bias from others based on the way you look because you’re differently abled?
Funnily enough, I think I’ve had the exact opposite experience. I think if you walk into a room and it’s obvious that you’re incredibly confident on crutches, there’s nothing really wrong with you at all, except you are minus one leg. If you can behave normally and don’t make a fuss, it’s very simple. I don’t think people mind.
People view me differently when I’m in a wheelchair. When you’re at an airport or that sort of thing, I think you’re seen more as a disabled person, because you’re sitting in a chair and visibly incapacitated. One of the members of our club is an expert on disability, and he runs a company that specializes in consultations for big companies and venues like the O2 in London. They advise people on how to deal with disability, and how to make things more accessible. He and I went to talk to the company that runs most of the assistance programs at airports, and I complained about the way they treat people in wheelchairs like suitcases, rather than people. They were absolutely amazed. They just had not realized.
We have a very well-known author and journalist called Melanie Reid, who writes a column in The Times’ magazine called Spinal Column. She’s a tetraplegic, I’ve come to read; she’s just got the use of her arms. I asked her if she could give me any pointers as to what it’s like to be dealt with in a wheelchair, and she said “If someone moves your wheelchair without asking you, it’s like being assaulted”. Now, I’d never thought of that, but of course, she’s in her wheelchair all day, every day. It’s part of her, and it’s just like being assaulted if someone moves it without asking. They should communicate with you, and tell you what they’re doing and why they’re doing it.
What’s your favourite thing about your SideStix?
I’ll tell you the truth: 34% of people with bone cancer who had the same operation as me last 23 months. I was rather fatalistic and never really bothered to buy much of anything initially.
When I got to five years, and was doing quite well, I thought, “Well, I think I can improve”. I got a bicycle, and then I decided that I should get some decent crutches. I looked around and I liked the idea of SideStix and especially the fact that you could go to the website and see that they were used by people who went over rough ground and all that sort of stuff. They’re simply the most comfortable crutches I’ve ever had. They have a closed, padded cuff and suspension, and they look cool.
Most importantly, they are very kind to the shoulders which is vital to continuing to stay mobile on crutches. The carbon fibre ones don’t scratch or get damaged at all. I’ve now got two pairs. I have one pair for everyday use, when I go out in my garden and get muddy, and another pair that looks immaculate – my dress-up pair!
What do you do to keep active?
I cycle on a recumbent bicycle. Otherwise, I go to the gym probably three days a week and do a lot of rowing, which I find is a good aerobic exercise. Just before Christmas, I took up yoga. It’s quite a long haul to get everything loosened up, but it’s slowly coming. All amputees ought to have a go at that. My target is the Sun Salutation. I’m getting close.
What are some of your passions?
I’ve become a beekeeper in the last three years. It’s good fun, and it means you’re out in the fields every week. I love travelling. We’ve been all over – to India, Russia, Burma, Laos, Cambodia… it’s wonderful to see how other nations live.
I’m 73, so I had sort of lived my life by the time I had my leg off. I was actually retiring, but I’ve gone back to work now. It’s just more fulfilling.
I’ve always got lots to do, because I’m involved in an artificial intelligence (AI) business in Switzerland that uses machine learning for psychometric testing. With their particular system, you deliver your CV on video for two and a half minutes, and minutes later you get a complete analysis of your character and traits. The great thing is, you see, it’s completely unbiased. If you do it with a human being, they meet you and immediately decide if they like you or not. They measure the way you speak, the way you look, your smile, your eye movement, and are self-consciously making an analysis of what they think of you. All this is doing as a machine is measuring all those metrics and transposing them into a report. It’s very new and interesting.
How do you stay motivated?
I think I’m just one of those people who is naturally motivated. I think you always have to have objectives, and one of the things I’m sure other amputees know is that your thought process changes completely because you have to plan everything. You don’t do anything instantaneously anymore. You think “well, I’ll go over there and pick that up, then come back here, put it down there”, and map everything you’re going to do in advance. There’s always the chance you’ll think “that’s quite a bore, perhaps I’ll just sit down and won’t bother to do it at all”. But I think I’m motivated by excitement: the excitement of doing something new, meeting new people, going to a new place. I’m just naturally inquisitive.
What advice do you have for other crutch users?
One thing that’s really important is to have well-fitting crutches. So many people I see haven’t got the length right or don’t use them properly. They sort of hop and use the crutches for stability, rather than using them as a swing through.
My personal hobby horse is persuading all amputees to concentrate on getting, and staying fit. Anyone using crutches is effectively walking with their shoulders, and shoulders are not designed to be used like that. Walking with your shoulders gives them a reduced lifespan, but if you keep fit, you will stay mobile for much longer. My advice to everyone who has had an amputation is to get into the gym and start training. You have to look after what you’ve got left!