I Don't Want To Die Yet, But I Need To Know I Have The Option

Sometimes I'm convinced my body hates me, because whenever I'm settled in with my abilities, I will get an injury and lose a bit more function, permanently. There are times when the pain is so bad, I can't sleep, and instead just cry for hours until it is time to get up again.

Feb 25, 2013 at 12:00pm | Leave a comment


Wondering if this life-saving EpiPen could also kill me, as the instructions suggest...

I mostly talk, and write, about the visible part of my disability, the wheelchair, the braces, the lack of physical strength. These are the things people notice and ask about, these are the things that mark me disabled.

These are also the parts I have fully accepted, up to the point where they don't seem that important to me - wheelchair access is important to me, but walking is not. 

However, I don't talk as much about the things you cannot see - the pain and the fatigue. Not a lot of people ask about them, and they are, in a way, private. They are also the most difficult of my symptoms to explain.

I'm not tired like most people, I'm exhausted all the time, and if I try to stretch myself too far, my body will simply shut down, making it impossible to move my arms, so that I can't use my wheelchair, and my pelvis will dislocate, so I won't be able to sit.

This means that the pain will be much, much worse. There are times when the pain is so bad, I can't sleep, and instead just cry for hours until it is time to get up again.

Sometimes I'm convinced my body hates me, because whenever I'm settled in with my abilities, I will get an injury and lose a bit more function, permanently. Or I will get a new symptom I never expected to get, or my thyroid shuts down. And sometimes, I just feel ugly.

In a way, I think it is good to have these moments, they make the moments where I feel good about myself all the more precious. 

But even though I'm really happy most of the time, and love my life and am fucking proud of the person I choose to be, I do hope I won't have to grow terribly old. And I'm pleased that I live in a country where I can make this choice myself. 

There are days that the pain is so bad, I can hardly breath. Those days, I don't pray for the people around me, I pray for sleep and I pray that I never have to wake up again.

It rarely happens - most days I'm really excited about the day to come, but frankly, dying in my sleep seems like a pretty good deal to me, so if  it were to happen tonight, I wouldn't complain. For me, life isn't better than death. And sometimes, death seems preferable over life.

I didn't get to chose to live, it just happened to me. I never choose to get this disability, it just happened to me, all I can do is deal with it - and I think I deal with it just fine.

I do the things I want to, but respect my body when it holds me back. I think I might be a better person for dealing with this, and it motivates me to make the world a better place for the generations that come after me.

I want to help to make the world a more accessible place - I think this might be my goal in life. Thinking about this, and how I'm going to achieve it gives me a sense of urgency. Something to get out of bed for each day.

But what do I have to live for once I've reached that goal? It's unlikely I'll ever have children, and as much as I love my cats, they're not going to be around forever.

One of the things that give me great satisfaction in life, is having control of it. I decide where I work, or even, if I work at all. I decide what I wear, when I get up, when I go to sleep, where I live, what I eat, when I shower, and when I don't. I decide which goals I want to pursue, I decide on how I want to make my mark on the world. Those are the things that make me happy.

But the symptoms of my disability can be progressive. Every time I dislocate something, I could hurt that joint so badly it won't be able to heal any more. I will be in more pain, I will get fewer opportunities to determine what I do myself, and I will lose part of my independence.

Even if my disability doesn't progress, old age will add to my need for help, to my lack of strength and to my pain. I don't know how this will affect me. I think that for the most part, I will deal with it just fine, just like I've done up to now.

But what if one day I don't? Losing control and independence, by becoming dependent of care agencies, or through institutionalised living, is one of my biggest fears. 

I live in the Netherlands, and have grown up with the idea that when I can't take it any more, I have the option to die, comfortably in my own home, with help of my own doctor.

In this BBC documentary, Liz Carr talks about how she doesn't feel the discussion should be about assisted dying, but about disability rights. It is explained how if one is faced with severe loss of control and independence, for instance by institutionalised living, the choice of dying isn't made as freely as it should be.

I never thought about that, in the Netherlands we tend to discard all criticism of assisted dying or euthanasia, as we like to call it, as something that's rooted in religious fanaticism. But I actually think she is right, if I want to die because I cannot live the way I want to, while accepting the physical disabilities I have, something is very wrong, and my death will not solve that.

Not that I think we should lose the option to choose euthanasia. The fact that this option exists allows me to talk about it with my doctors freely, to discuss which treatments I want, and which ones I don't. It also allows me to talk about it with my loved ones, my family. And yes, I'm grateful for the fact that I cannot only discuss it, I can also request it.

Institutionalised living might be considered a poor reason to die for some, but it would be plenty of reason for me - and so would the pain. Just as with abortion, I don't believe some reasons are better than others. These choices are way to individual to be judged by someone else. Whatever feels right for me, is right for me. 

This isn't exactly how it works in Dutch law. My doctor is only allowed to help me die, if she's convinced that I came by that request well considered and voluntarily, my suffering is unbearable and there is no hope of improvement and all other options must be exhausted. You also need to get a second opinion, and that doctor needs to see you and agree with your own doctor.

So I fear that when I've reached the point where I've had enough, my doctor might disagree with me, and I won't have a choice any more. I didn't choose life, I didn't choose my disability, but I want to be able to decide when I've had enough.

And it's some comfort, on the days when I cannot breathe due to the pain, to know that, with all of my lethal allergies, all it would take to ensure I won't grow terribly old, is one hot cocoa.

Fem is tweeting about her disability @fatalefem