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What Does 'Fighting' Really Mean When You Are Severely Disabled?

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Grab the cuppa of your choice, and make yourself comfy, this is a long one. But it may also be the most important and passionate thing I’ve written.

I love Dylan Thomas’ poem “Do Not Go Gentle.” (Click here to go to YouTube to hear the full poem read by the man himself.) I know, I know, it’s about death, but actually I think it’s about life and how you live it. We all have challenges of one kind or another; do you just resign and submit to the hand you’ve been dealt? Or do you strive for “life in all its fullness?” And what does that mean for those who are very severely ill, who are already in a “living death?”

Another poem I’ve thought a lot about lately is “Invictus” by William Ernest Henley:

Out of the night that covers me,

Black as the pit from pole to pole,

I thank whatever gods may be

For my unconquerable soul.

In the fell clutch of circumstance

I have not winced nor cried aloud.

Under the bludgeonings of chance

My head is bloody, but unbowed.

Beyond this place of wrath and tears

Looms but the Horror of the shade,

And yet the menace of the yeras,

Finds and shall find me unafraid.

It matters not how straight the gate,

How charged the punishments the scroll,

I am the master of my fate,

I am the captain of my soul.

“Invictus” is Latin for “unconquered.” Henley wrote the poem after undergoing a leg amputation and while recovering from intensive surgery on his remaining foot. The poem was part of the inspiration for the recent Invictus Games in London, “an international sporting event for wounded, injured and sick Servicemen and women… about survival in the face of adversity and the strength of the human spirit… a celebration of resilience and passion.”

I love this concept. I am rarely able to watch TV, and the noise and fast movements of sports are particularly difficult, so I only watched a tiny bit of the Invictus Games, but I saw enough to be moved and inspired. I used to work as a Support Worker for people with long term neurological conditions (ironic, I know), and I have always been passionate about facilitating people with disabilities to find their own ways of living their lives to the fullest. I love the incredible opportunities out there these days for people with disabilities. Like the Paralympic Games, the Invictus Games and the two poems mentioned above all fan the flames of my passion for life and for fighting against adversity. It’s beautiful stuff. And also a bit troubling.

I look at those athletes with disabilities, and I find myself inspired, moved and troubled, because, if I’m honest, I’m a teensy bit jealous of them. 

I have huge admiration and respect for them, and nothing in this post is meant to diminish their incredible achievements or disregard/make light of their challenges. I know many of them have been through huge trauma and pain, all of them have faced overwhelming hurdles. My body is not outwardly scarred by my illness; I can see, I can hear and I have all my limbs. But I can’t do a tiny fraction of the things they can do. Many days the toilet is as far as I can get. It has always been my ambition to run the London Marathon, but now I am not even able to watch it on TV. Does that mean I have any less willpower, strength or determination than athletes with disabilities? Of course not! It just means our situations are different and we are each doing the best we can with the hand we’ve been dealt. To put it somewhat crudely, people with disabilities can often be split into those who are “fit disabled,” and those who are “sick disabled.”

Society isn’t great at accepting people with disabilities. People don’t like to be reminded of the frailty of the human body or see anything that doesn’t match up to today’s false and unattainable standards of beauty and success. All people with disabilities have had to deal with discrimination, ignorance and prejudice of some form or another. However, things are improving, and events like the Invictus and the Paralympics have definitely helped show people with disabilities in a positive way. But what about those in the “sick disabled” group?

Society is inspired by athletes and others with disabilities who achieve great, heroic deeds in a blaze of publicity, but I think we should be just as inspired by the severely sick people who struggle behind closed doors each day, who don’t give up the fight, whose spirits, though wounded, are unbroken. For many, just continuing to breathe is a harder feat than climbing the highest mountain, and they do it hour after hour, day after day. That is strength, that is determination, that is resilience.

Being an athlete, whether you have a disability or not, requires great sacrifice and incurs significant physical pain. But athletes choose that lifestyle, and they can choose to stop; they can choose whether or not to train that day, they can choose to cut a training session short and they can choose whether or not to continue with their athletic career. People with illness did not choose to be ill, and they cannot choose to stop being ill. All they can do is fight the illness by doing all they can to maximize their health. People with myalgic encephalomyelitis (M.E.), especially those like with very severe M.E., have our achievements measured on a totally different scale, and there are no medals hanging around our necks. But just because our achievements may be measured in millimeters rather than miles doesn’t make them any less noteworthy.

So, to get back to where I started this post, how do people with severe chronic illnesses fight? How do we “rage against the dying of the light?” How do we strive for life in “all its fullness,” become the masters of our fate and keep our souls unbroken, unconquered? Because triumph over adversity doesn’t mean the adversity goes away. Maybe the phrase should be “triumph in adversity.”

Pre-M.E., I didn’t exactly have a clean bill of health. Complex gynaelogical problems caused all sorts of issues, including extremely severe chronic pain. (See the first few paragraphs of this post if you want a bit more detail.) Things were tough-going for a while. The only way I could mentally and emotionally cope with the pain was to pretend it wasn’t there and just “push through” it. I became a pretty good actress, and even those closest to me could often not tell when the pain was getting worse.

“Pushing through” became an ingrained coping strategy. People have told me how inspiring I was to them, how much they admired my fighting spirit and my ability to keep going — and that’s lovely, but it wasn’t a natural or even necessarily healthy way to be. Pain and other physical symptoms are there for a reason; they are the body’s signals that something is wrong and we need to do something about it, and ignoring those signals is tantamount to self-neglect. But I was striving to make the most of my situation, and I didn’t know how else to do it.

And I must admit, that striving did serve me well; after local surgeons said there was nothing more they could do for me, I decided to take control of my own health care. I did a load of internet research, which led me to a national specialist surgeon; long story short, he operated on me and gave me my life back and made it possible for me to have a child. So I don’t for one second regret my refusal to give up on life, but the “pushing through” aspect of this coping strategy had become an automatic part of me, to the extreme that, some years later, I refused to believe there was anything more than a bit of bruising wrong with my ankle, when in fact I’d actually broken it. That’s not admirable or inspiring. I didn’t learn my lesson, though.

When I got M.E. in 2011, before I was diagnosed in 2013, this “push through” mentality came straight back to the fore. I ignored pain, numbness, dizziness, balance problems, muscle spasms, increasing cognitive impairment and more, compounded by the fact that when I did eventually tell my doctor what was happening they refused to take it seriously. So I kept going to work and I forced myself to exercise despite tears of pain and frustration. I didn’t tell even my closest friends and family how bad things really were — in some cases, I hid the fact that there was anything wrong at all — even when I had to give up work in 2012. I even set up a business from home and ran myself ragged trying to help friends. I had no idea how dangerous all this was because I didn’t know I had M.E. or what that meant; I didn’t understand why my health was getting worse and worse, despite healthy eating and exercise and trying to think positively and giving up work and everything else I tried. I thought I was looking after myself and trying to improve my health, but I was forgetting the most important thing: to listen to what your body is telling you.

The fact is, that no amount of exercise, positive thinking, ignoring symptoms and pushing through will help someone with M.E. — quite the opposite. Any amount of overexertion is dangerous and can cause a worsening of the condition, no matter how much you want to believe otherwise. I guess it’s not so surprising that I’ve gone from mild/moderate M.E. to severe in just a couple of years. If I had listened to my body, and if the doctors had listened to me and given me appropriate advice, it’s quite likely that my M.E. would now be far less severe than it is.

Once I was diagnosed with M.E. and learned more about the disease, I realized I had to unlearn all those old “push through, ignore the pain” coping strategies that were doing me so much damage and learn to listen to and respect my body. I took myself to task and did the difficult work of changing my unhelpful thinking patterns, and was rewarded with a greater level of stability in my health. By August/September 2013, I realized I was having less health “crashes,” and some symptoms had actually improved.

Accepting all this vitally important stuff, though, is not without its dilemmas. If I couldn’t “push through,” how could I “rage against the dying of the light?” How could I fight?

I guess it all comes down to this:

People with M.E. have to change our perceptions of what “fighting” means to us and also change our perceptions of “life in all its fullness.” Fighting needs to become not pushing through or ignoring our symptoms, but maximizing our health by respecting our bodies, resting and learning to say no. Living life to the full needs to become about finding meaning and fulfillment in beauty, joy, laughter; in choosing our priorities; in connecting with others when possible; and in the things we do achieve, rather than measuring ourselves against society’s standards of achievement and success. Reaching out and finding mutual support with others in the same boat is key to this; most people would respond with a disgusted “ugh” if I told them I just had a shower for the third time this year or whatever, whereas people in a similar situation to me see this as a huge cause for celebration. They know this is my Everest, my Olympics; they cheer me on, and they understand why I am then not in contact for days because of the repercussions of such a huge activity.

This has a positive knock-on effect on your mental state, or at least it does for me; learning to see joy and beauty and meaning in the little stuff, stuff other people don’t even notice, opens us up to a world of amazing things. Those things were there all along for everyone to see, but life gets in the way and we just don’t appreciate them; it is joyful to re-learn a childlike excitement for life and the world. It is nearly six months since I last went down stairs and even longer since I went outside; imagine how incredible it will be when I can look at the sky again, smell the air and feel the wind on my face. I am so looking forward to that, but if I wasn’t currently confined, if I’d been seeing the sky every day, I would have no idea of how treasured that experience should be.

I’m not saying this stuff is easy to learn or to put into practice, and I’m by no means an expert. It was actually my mum who brought the “Invictus” poem to my attention; she said she thinks it embodies the spirit that keeps me going. This really encouraged me, but I think it’s overstating things somewhat and I definitely can’t say that I am “unafraid” or that “I have not winced nor cried aloud” (although I’m not so sure that’s a bad thing; I am still human, there’s no shame in admitting life is tough, and not giving vent to inevitable feelings of pain, grief, anger, etc. will only cause them to fester).

It’s extremely tough to keep an appropriate kind of fighting attitude going in the face of the world’s disapproval and judgment that we are “giving in.” So the public often see people with M.E. as lazy, demotivated and just not trying hard enough. To be fair, M.E. is a tough disease to understand, and if you haven’t lived with it, it’s hard to understand the depth of suffering or how exertion can be so damaging. So well-meaning people frequently try to encourage and challenge me to do more than I know is safe, and I can tell they think I’m giving in to the illness. It’s tough to maintain your resolve in the face of such attitudes.

What it is perhaps impossible for many to understand is that, by stopping myself from doing things I could perhaps sometimes manage by overexerting myself, I am not giving up or giving in to the illness; in fact, this is my way of fighting. It’s my way of keeping as stable as I can so I can still enjoy as much quality time with my husband and daughter as possible, rather than always being too sick to have them in the room. It’s my way of retaining some capacity for laughter, joy and the appreciation of beauty, rather than being blinded and depressed by overwhelming pain and other symptoms that may not have been so all-consuming had I been more sensible. It’s my way of doing what I can to reduce the likelihood of the disease progressing. Ultimately, it’s my way of trying to keep myself as well as possible so our daughter may be able to keep living with us, and there’s not much in this world more important to me than that. This is my way of “not going gently into the night.”

Everyone is different. We all have different needs, interests, family circumstances, priorities and passions. We find beauty and meaning in different things and have different things that keep us going. And in the M.E. world, there is a vast range of severity levels, which will obviously have an impact on the way in which someone fights and the choices they have to make. I am incredibly fortunate to be able to have so much joy and beauty in my life; people with very severe M.E. are much, much more limited but not through lack of fighting spirit or love for life. We need to be careful not to judge or criticize someone else’s way of fighting; we’re all different and have different needs, interests and priorities.

To all the M.E. warriors out there, and their carers: I salute you. You triumph daily at your own personal Invictus Games. Your endurance, fighting spirit and perseverance are incredible. If I could give you each a thousand medals I would, and you would deserve every single one. You rage against the dying of the light each day and strive to live life as fully as you can; you are a huge inspiration to me. Thank you.

A version of this post appears on Cheering From The Sidelines.

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Originally published: April 20, 2016
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