Right to Die? Right to Live is better!

Posted on April 18, 2013 by Mik Scarlet

Yet again the press is filled with the story of a campaigner who are going to court to end the terrible suffering of their life as a disabled person. This it is Paul Lamb who is claiming that his life is should be ended at the hands of the medical profession, as he feels he no longer wants to go on but is too disabled to end his life himself.

I am so saddened that another person feels that they have the right to even consider taking this case to court, whatever their disability or condition. I keep hoping that our society will start to see that if we do go down this road, we are starting out on a very slippery slope. Once the law has been changed to allow doctors and medical professions to assist a person to die, where will it end? I know from own experience that some doctors see someone like myself as having a “poor quality of life”, no matter how much I have tried to make them see how wonderful and fulfilling your life can be when you are disabled. But we never see that anywhere in our media, not even when the Paralympians were going for gold. It’s always how amazing we are in spite of our disabilities, not thanks to them. And you never see anyone who feels like me, that becoming disabled was the making of them. The constant barrage of negativity creates a stereotype of disability that feeds into the psyche of everyone, especially those people who suddenly find themselves with a new level of ability. Something that is really important about Mr Lamb’s case is that he is not terminally ill. No he has a static disability, and therefore is not being “saved” from a ever growing level of illness or incapacity but rather from his feeling that things just cannot get better for him and people like him.

I know, as while I have been disabled from birth, when I became a wheelchair user at the age of 15 I really thought my life was over. I just couldn’t see how I would live, work or find love. I imagined the kind of life which Mr. Lamb describes when he talks about his own. Yet this is not what happened. Instead, with the support of family, friends and many others, as well as taking advantage of all of services that the state provides, I began to build a new future for myself. Within a few years I had started out on the road to becoming the man I am today, with the amazing life I live. I now look back on my newly acquired level of disability as a truly positive thing, the day my life started for real. I truly believe that everyone could learn to feel this way, if they were given all the assistance, guidance and support that is required to help people come through what is a hugely difficult process.

This is what Mr Lamb really needs. Not a change in the law that would open a can of worms for all of us, whether we have a disease, disability or are elderly… or eventually squinty, ugly or just undesirable. No he needs help! From watching his interview on the BBC earlier this evening, it is obvious to me that he is depressed. Not only is this a normal effect of learning to live with a disability, and I myself went through a serious depression early on in my life on wheels, but it is also caused by chronic pain, another issue that Mr Lamb complains of suffering. Yet again this is something I fully understand as I also have long term chronic pain as part of my disability. So I really do understand why he feels this way, but I just can’t support his quest for assisted suicide. I would instead want to see a campaign that ensured that people like Mr Lamb were supported to have the kind of life he wishes he could have, which is possible no matter what society might believe.

We must stop always focusing on the negative stories of the very few people who are finding it difficult to cope and instead expose the myriad of positive stories our there of happy, contented disabled people. It will be of benefit for all of us, disabled or not, and will go a long way to changing the lives of so many people who are having such problems with building a new life after coming to a disability. The thing that saddens (and worries) me the most is that this campaign coincides with the big government push to cut costs and services. To me this is not by accident. Why spend all that money on creating a society that ensures that disabled people can live fulfilling, happy, independent lives when you can assist them out of this world and save all that lovely cash for the fit healthy non-disabled? Combine this with the terrible way disabled people have been portrayed as drains on society or fraudsters and it is a perfect storm for this story.

So please, everyone who reads this; stop and think. Next time you see someone begging to be “put out of their misery”, no matter how much you might buy into the stereotype that this must be the only human thing to do, please understand that you are entirely wrong. The only true act of humanity would be to stand beside them, support them and help them through on their journey to a new understanding of what is possible for someone with a disability. If we all fight to create a world were that is the reaction to seeing people in Mr Lamb’s position then not only will they benefit, and thus become less and less common, but so will we all. Because at the end of the day the fear of how people would cope if it happened to them fuels the public support for this campaign, and of course all non-disabled people are just disabled people the day before the accident or illness hits them. So if we could remove that fear and instead start living in the knowledge that we would all be helped to create a new, and possibly better, life, then the word “disability” would no longer have all the negative connotations that are currently associated with it.

Being disabled should never be considered a reason for a person to be put down. I just hope that one day being disabled will be something that people feel proud about. I know I am… very.

The Old "Makes You Stronger" Line?

Posted on October 3, 2012 by Mik Scarlet

Sorry for not finding the time to put my thoughts out there into the internet recently. I have been so stupidly busy that time was something I didn’t have. Of course I will not complain as busy means financially viable, and in today’s world that is amazing. But yesterday I took an afternoon out of my hectic schedule to attend a meditation class for people who suffer from chronic pain.

I have made no secret of the fact that pain is part of my world, whether it’s the back ground pain of my spinal injury and the nerves trapped in the surrounding scar tissue, the various bone issues I have thanks to the decrease in density that goes with not using your legs, the ageing process that is hitting home in my shoulders or the neuralgia that strikes every now and again. It is the neuralgia that made me want to find a different coping mechanism, other than the usual pain medication. When it hits, the pain makes me a little crazy and can get too much to cope with. Pain killers won’t touch it so I thought I would search for another method of coping, and found a system called Mindfullness. I won’t explain it to you, mainly as I have only one session and am still trying to learn the method.

Instead, I wanted to explore my feelings on pain. I can’t mention any of the other people on my course but hearing their stories made me realise that pain is all relative. Some had obviously serious health issues that caused pain, other had conditions that led to pain that was unbearable for them but less than others. But everyone there was trying the class as they had reached a point where their pain had got too much. So whatever that cause or level of pain each member was going through, we were all in a similar place. Pain is like that. All relative. There is no level at which you can’t cope, as everyone has a different ability to handle pain. And there is no right way of coping either.

While we were discussing our stories one person stated that they hated the Nietzschean idea that what doesn’t kill you makes you stronger, as chronic pain is something that doesn’t kill you and doesn’t make you stronger. That funny thing is that I have always felt my pain does exactly that, makes you stronger. But maybe that is just the effect of my method of learning to cope with it. Treating it as an external force that needs to be beaten. I am the boss of my body, so it cannot be allowed to dictate to me how I live. It might be a typical masculine way of coping, but it does mean I have learned to beat a high level of day to day pain.

During our session we did a “mental body scan”, which involved meditating on our bodies and exploring them with our minds. This was a very unpleasant experience for me, as I had forgotten how many places on my body hurt. A great deal of my pain had become part of my background day to day life and I had stopped noticing it. So this exploration of body opened me up to a pain I had learned to cope with, and led me to spend the rest of the day in great discomfort… and I still am today. But it proved that you can learn to cope with pain and that ability does make you stronger. It also showed me that the reason why some of my pain still gets to me is that this that it is the straw that breaks the camel’s back, so to speak.

The thing that stuck me is that pain is something that is invisible but that can eat away at your day to day life. With the current obsession with getting people off sickness and incapacity benefits, those people who suffer chronic pain are among those most effected. Yet they really are entitled to support and assistance. While I may be able to cope with most of my pain, I have had it since birth. Even I have days where it effects me so much I can’t work, especially the “going off to work in an office or factory” type of work, so those who develop pain during their life cannot be expected to be able to carry on with a “normal” life. They need help to cope with the pain and support while they do.

So if you have pain in your life, don’t worry. You can learn to cope, and you can rebuild your life. For the rest of you, when you next hear all the rubbish the government is spouting about getting people off benefit remember that some people need and deserve those benefits. But more than that, remember that illness or disability could strike you tomorrow, or even later today, and that’s why the system exists. Make sure that if you ever need it, it still exists for you to call on.

Right, I’m off to relax and rebuild my coping strategies ready for another full day tomorrow. No rest for the self employed eh?

The Last Taboo? Pain – Why does it hurt us to admit to it?

Posted on April 13, 2011 by Mik Scarlet

Chronic pain has been part of my life for thirty years. I have always had periods of pain ever since I was born, but after my spinal collapse at 15 pain has been a constant companion. In fact I grew to treat it like a separate entity, that accompanies me where ever I go, one that has moods and throws strops if I ignore it or forget to treat it with respect. Having said that, I do not let this awkward unseen friend effect my life and what I do.

Through out my life I have met other people who experience chronic pain, and have found that they have tried to find their own ways of living with it. The one common thread that ran through all the discussions was they wanted to keep the pain they were in a secret. No matter how much the chronic pain haunted their lives, everyone I spoke to asked me not to tell anyone.

A few years ago I worked with someone, who I shall called X. One day they noticed me wincing behind some filling cabinets, and seeing signs they knew well invited me for a coffee. We sat and chatted about our secret relationship with pain. They admitted that no one in our office knew, and they wanted to keep it that way. To be able to go to work they self medicated with a mixture of morphine, a legal prescription drug, and Amphetamine, an illegal stimulant. At the weekend they took a legal cannabis derivative and fell into a pain free trippy sleep. They were sure that if our bosses found out about how they coped with their pain it would be the end of their career. Years later I met another fellow of the pain, I shall call them F, and they coped with it in a very different way. They swore by alternative methods, and found that some worked to great effect. They also asked me to keep their secret.

In the past I have always tried to keep it quiet, and have even over compensated for something that no one else knew about. During my years working with on the BBC’s From The Edge program I tended to be considered their “action cripple” and was asked to do the items that involved doing crazy things. I always said “Yes”, even though I knew they would cause my pain to flare up to almost unbearable levels. I could easily have turned the job down, but felt by doing I would be letting pain control my life. I never told a soul.

As I get older I no longer feel the need to hide anything. As I tend to admit that I have issues with pain I keep finding that so many people I know have similar problems. They nearly all want it kept a secret. What is at the root of the desire to hide how much pain we are in? Part of it is not wanting to conform to the stereotype that disabled people are sickly and weak, but this is a secret kept from everyone, even other disabled people. Another factor is that look of sympathy that we get if we do admit to it. Recently I saw an old colleague from the DPU and we had a chat about the old days. When I told them about the amount of shoots I went on while in agony, I saw that look. I also wonder if we are ashamed of the pride we feel by fighting our pain. I mean the world around us seems to buckle under a head ache yet we battle through in agony. See, we’re tough. I know how great it makes me feel mentally when I do something that my pain should prevent me from even thinking about. So maybe I still an action cripple, just an ageing one.

Last weekend I met a gang of wheelchair using action junkies and one by one they all admitted that they had issues with pain. These discussions led to them all admitting that doing adrenaline fuelled stuff was their version of self medicating. One of the great parts of meeting these guys was being able to talk about pain openly. Pain and embarrassing hospital stories, but that is another blog.

Whatever the reason, chronic pain seems to be one of the last taboos of disability. Until those of us who live with it feel we can come clean, we can never really be ourselves and if we do come out with the chant of “in pain and proud” then I think we’ll find that we aren’t as alone as we imagine.

Anatomy Of Addiction

Posted on October 6, 2010 by Mik Scarlet

While I am out of the woods on the pain front at the minute, the drugs I took to cope with my last episode has left me thinking about addiction. You see I am currently going through withdrawal from high doses of Codeine, which is a medical grade drug and similar to Morphine. As we all know Morphine is what the medical profession call Heroin, so this type of pain killer is highly addictive. So I hope you can imagine what fun I am having right now. If not, let me explain.

We currently live in a society where the word addiction is used a bit too freely. People claim to be hooked on shopping, sex and even chocolate. Now I don’t want to be too insulting about these claims (actually I do but I won’t) but at the most these people are addicted to the rush gained by indulging in their “habit”. It is the same as people who claim to be gambling addicts. The endorphine rush gained by risky behaviours like gambling is greater than that of shopping, but it is still only enjoying the chemical high that endorphins release. These types of addiction are really just a case of not being able to resist something that is enjoyable. Even the crushing tragedy of gambling and the damage it does to families is only fed by the need for the rush and misguided belief that “this time I’ll win”. Whatever people in the field of trouble gamblers say, it is not the same as needing a substance that alters the way your body functions physically.

Using substances such as drugs and alcohol over a long period lead to a change in the way the body works, and mean that any user reaches a point where they need that substance to function normally. While recreational drugs and alcohol are things you normally start taking for fun and then fall into addiction, pain killing drugs are something that you have to take. Annoyingly they are also very addictive. Really really annoyingly the way they manifest this addiction is to lessen your ability to cope with pain and when you want to come off them they make your brain create false pain. So I end up with bad headaches and aching wrists. Mostly. Of course many other “phantom” pains can manifest themselves. Today I have stomach cramps. But that could be part of another fun side effect of coming off Codeine, tummy upsets. Opiates bung you up big time, but as your body gets used to them your body returns to normal. When you come off them you can get all manner of stomach hassles. Sometimes they can be as violent as the poo the bed scene in the film Trainspotting. Nice.

Now every character in Trainspotting took drugs for fun, well at first. Whatever your feelings around recreational drug use, withdrawal is pretty much the same. The body needs the drugs to maintain a normal function, and so you have through the discomfort of the resetting of you body’s systems, as well as whatever your body throws at you to get you to take the drugs again. That is what addition is. I think that society needs to focus on this part of the drugs debate when discussing how to make drugs less appealing. The best argument a drugs is that everything has a balance effect. The highs that drugs bring means that the lows will be equally dramatic. When I take my pain killers I know that the effect of lowering the amount of pain, which is nice, will have an equal effect when I stop taking them, which is not nice. But you won’t get one effect without the other. It’s the same for all physically addictive substances. Luckily I have been taking various types of pain killers since I was 15, and now know what to expect and how to best fight those effects. Not saying it’s easy but knowing what is coming does make the process of withdrawal less scary.

Anyway, I have a around a month to go and should be back to being clean. Then all I have to do is hope that my next bought of pain won’t happen too quickly. Fingers crossed eh?

Anatomy of Agony

Posted on September 27, 2010 by Mik Scarlet

I have finally come out the other end of a period of chronic pain. Spending three weeks coping with a level of pain that meant sleep was impossible, driving would have been very inadvisable and even dressing became too difficult to consider has dramatic effects on both your physical and mental well being. Everyone who suffers from chronic pain has the same experience of this debilitating problem.

Now I have a usual level of pain, caused by a spinal injury, a dislocated right hip, trapped nerves and aging shoulders (one of the joys of using a wheelchair, your shoulders do much more work than they were meant to and so age more quickly). I am used to dealing with this, and have found ways of doing so. Yes, it can be annoying and can mean that I find myself less focused or easily annoyed on a day when the pain is a little more than usual. However, every now and then events conspire to create a massive spike in my pain levels, and then things really do go off the rails.

This time I fractured my ankle, tore a muscle in my back and thus caused a set of trapped nerves to become inflamed. This led to my sensation below my waist to become “hyper-sensitive”. Hyper-sensitivity is where all normal feelings and sensations are increased to an almost unbearable level. When it happens I find wearing socks and trousers an agony, so you can imagine what might happen when it combines with a fractured ankle. Stupidly I did all this when trying to find out if I might be able to go back into club DJ-ing. Proof that however much this government might be trying to get disabled people back to work, until the built environment is fully inclusive this ambition is going to be one hell of a struggle. Whatever this event meant politically, personally it was a period of hell.

It started as a niggle in my right ankle and within two hours had grown to a level of pain that had me screaming the house down. My poor neighbours, they must have thought someone was murdering me. It felt they were to me. Pain is strange. When it takes hold it almost has a physical presence. I know when I had broken my back for the second time in 1999, as my spine collapsed the pain took on a physical element. As the nerves to my toes where being crushed I was kept awake by what felt like rats gnawing at my feet. Of course I didn’t have rodents eating me, but what was happening was the brain read the different nerve impulses and tried to make sense of them. But not only do situations like this happen, but pain itself feels like a entity has taken hold of your body. Especially terrifying as I could not feel my feet at this time. I know have full feeling below my waist, but at times of extreme pain this is not a boon. Oh no.

I will admit I have a strange relationship with my body. It has been the cause of many problems in my life, and so I do tend to feel that “I” live in my body and we are at constant battle. It’s how I have overcome many illnesses and debilitating physical problems. I battle them and my body equally. It never wins. When this hyper-pain strikes it isn’t my body that is fighting me yet again, it feels like something else. Like an dark entity takes over and it is trying to break me using pain as a weapon.

All this might sound like it is taking on a spiritual element but it is more that the way the brain struggles to cope with situations like this are what has led to our need to find supernatural reasons and causes. I know there isn’t an evil spirit taking over my body, and that it is a purely physical function of pain, it does feel like you are battling something “other”. I am sure that this is something that evolved to enable us to fight back, by battling against this entity instead of our own bodies. And it is a battle. Many times in the last weeks I have found myself unable to continue. Yet continue I must, and did. I also won. I always have. I always will.

During the moments where I feel the battle is too much to continue, I have an insight into those people who want euthanasia. Yet I know in my heart I will prevail, and so it saddens me. During the huge internal battle against this pain monster, I regularly am struck with tragedy of those who want to die, and especially those who do. I know how easy it would be to bow out, and what a relief it would be too. But there is no way I will go without a fight. Once the battle is over I know I was right.

I don’t know why I felt I should write this blog. I just wanted to put out into the ether my thoughts on pain and how it effects you. Everyone I have spoken to who suffers from chronic pain has a similar experience of it. Those who have continuous chronic pain seem to cope better on a day to day basis, thanks to finding mechanisms of treating the pain via various ways, but they do find that the pain gets to them eventually, whether it is physically or mentally. I know I am lucky. I have these periods ever six months to a year, and while they are terrifying while they last, once they are over I can go back to my usual pain and my usual life. Yes even my usual pain does effect the way I live, but it doesn’t stop me dead.

All of us that has pain as part of their disability knows how little that is considered by the greater public. No one looks at someone like me and even thinks of pain. In fact feeling isn’t normally something people associate with paraplegia! Many conditions that are hidden disabilities have pain within them. One day I hope that the public, and especially the government, understand how pain effects ones life and might even start to find ways of helping us fight the spectre of pain.

Still Ill

Posted on September 14, 2010 by Mik Scarlet

Hi there everyone.

No big rant today. Just a very short note to say sorry for going quiet. I’ve been struck down an attack of nerve pain that has stopped me from doing anything. Been laying in bed going OUCH!!!!! for nearly a week. It’s finally stopped now, but I still have to withdraw from the pain killers I need to take during these attacks.

The doctors never tell you about these hassles when you go into a chair, and they sure has hell don’t tell you that getting back your feeling will make them worse! I can honestly say that this week has been like being tortured. So if anyone in the secret service reads this, I know I would make a great spy. If I was captured then nothing any torturer could throw at me would beat what my body hands out. I tell them nothing! Ha ha.

So hopefully I’ll be back to blogging in a few days, once the fog of Codeine and Morphine lifts. Groovy man.