On life, death and "fatigue"

A personal essay by Maija Haavisto, written for CFS/ME awareness day 2008.

I'm having a hard time picking an appropriate cliché to start with. There are so many good ones, like "I am sick and tired of being sick and tired" or perhaps something about "growing as a person". Everything seems so trite in this context. It is easier to write about other people than about yourself.

It is pretty awful to find out that you have a progressive neurological illness with little chance of recovery (gee, who would have guessed?). It is not something that sinks in at once, it may take years. And even after years, you find yourself thinking that it can't be possible, it can't be happening to you, there must have been a mistake. I am still a bit in denial. I am much more concerned about other people with CFS/ME (or another serious illness) than about myself. I guess this is a mechanism I use to retain my sanity.

When I found out about it my first concerns were of the practical nature. Can I get on disability? (No, there's no chance in hell). Can I get a wheelchair? (You wish!) Will there be someone to care about me? (Maybe if you win the lottery first.) And how do you tell others? This has been one of the most difficult aspects. I've been especially shocked about the way many people just completely ignore the whole thing, as if I never said anything at all. If you ignore something, it doesn't exist. This is how people deal with us, this is how the society deals with us and occasionally also how we cope with ourselves.

I can break out a secret for you: everyone with a chronic illness mourns for what they have lost. Even us who aren't depressed do. Even those who seem the bravest and like they have excellent coping skills probably do. They just hide it, because they don't want to upset others, or because it would just be awkward. If I say I'm great or I feel like shit, I do mean it. But I know some people who say "I'm okay, nothing special" yet if you are perceptive you can hear that what they are really saying is "I've felt horrible lately, I wish I was dead."

Losing your health can make you lose everything else too. I'm lucky I've got to keep my boyfriend, many friends and many family members. I've had a career and I haven't ended up on the street despite risking that numerous times. For many people the thought of not being able to have a partner or kids is the worst part. Luckily for me I've never wanted kids, but I would have enough plans for several lifetimes.

If you excuse some psychobabble words, the loss of health begins a grieving process just like breaking up a relationship or losing someone you love. It does get easier with time, but it may take a very long time. What I find ironic that if someone is dying of cancer, they are told to fight, to never lose hope, even if the situation is obviously hopeless. But if you break up with someone, people tell you to get over it, even though in that kind of a situation there is more hope.

What is so evil about CFS/ME is that it attacks all parts of your body, especially the one most critical for your personality (the brain) and those the most critical for your survival (the heart and the immune system). It is frightening to become so aware of your mortality. Many people with CFS/ME have trouble falling asleep, because they are afraid that they won't wake up in the morning (a common reaction in terminal illness, too).

I've been there too, especially when I've had a flu or another acute infection. I have heart damage from CFS/ME, including possible myocarditis. There have been people my age who have suddenly died because of CFS/ME myocarditis. The fact that you will never find out if you drop dead suddenly (or while you are asleep) doesn't make the thought any more pleasant. I also worry about dying from an opportunistic infection. For some reason the idea of dying from an infection scares me more than dying of cancer, even though CFS/ME greatly increases the risk of cancer (for example, over 1,000 fold for some B cell lymphomas).

I don't let the fear of dying stop me from living. But I can't help childishly wishing for immortality. It reminds me of an online profile I once saw, created by a cancer patient. The page had a quote saying something like "Why do we have to die? Why can't we just stay once we're put here?" This is how many of us feel, even though it is rarely said out loud.

Even after eight years of this illness, writing this essay has made me feel detached. Is it really me writing this essay? Do I really have a severe illness caused by a chronic viral infection which has caused me permanent organ damage, one that the society all but ignores? It is still difficult to get out of the mentality that horrible things always happen to someone else, not you. And once you realize that this is what life really is, it makes you realize how vulnerable we really are in general. Your house can burn down with everything you own. You can be widowed at the age of 25. You can be horribly disfigured in a car accident. All of these can happen to you. Life isn't fair (or unfair either - it is just random). But that never really hits you as long as it does feel fair enough.

At the same time I do and don't wish that I'd have never got sick - it is a real cliché, but the fatigue, fever, cognitive problems and pain have made me what I am. I am a better person for it and it has enabled me to make more meaningful choices in life. It seems paradoxical, but I think I am happier now than I would be if I had never got sick. I am not bitter; I have no real regrets. But I wouldn't mind if one day I would wake up in a healthy body... I just cannot really picture life - or my personality - as a healthy person any more than you could imagine what it would be like living in an entirely different culture.

On the other hand, had I not found the treatment for myself, I doubt I would be very happy, because I would be too sick to do much of anything. I probably couldn't walk and I couldn't take care of myself. The thought horrifies me. Yet there are people who tell me they could not cope if they were in my current position, which is far from the horror that my life would now be without LDN. I also know people who are completely bedbound and cared by others, yet they are happy and enjoy their lives. I wonder if I could be - but I'd rather not find out.

Being sick has also exposed me to some things so utterly horrible that I would have never thought them possible. I am not talking about my symptoms, but the way sick and disabled people are treated. Realizing the extent of that abuse has forever changed my life and thinking. I lived in a family ruled by alcoholism, abuse, violence and psychotic delusions, but that doesn't compare to what doctors have done to some people I know.

It has been equally difficult adjusting to the idea that many people see the disabled as non-humans. There are those who stalk and threaten people in wheelchairs and those who'd like to see all crips killed or isolated into their own areas so that "normies" wouldn't have to see these loathsome creatures. I shudder to even think about many of the horror stories I have heard. I feel so incredibly helpless about not being able to do anything about it.

In a way I have assumed a role of a mother figure, despite being younger than most other crips I'm in contact with. I am like a fierce tiger mother who roars "Don't you dare to hurt my 'kids'!" I am an agony aunt who tries to convince people that there is hope, that things will get better here, while hardly believing it myself. I am just fighting hard not to lose that hope myself when I am watching things get even worse. It is hard being everyone's shoulder and yet feel utterly helpless. We shall overcome, but I would feel better knowing it was due in my lifetime.