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The Great Beyond

Having Severe ME/CFS is so close to being dead. There’s really no other way to describe the experience I have had. I don’t think it’s something that people who haven’t had severe ME/CFS can likely understand. Looking back at who I was when I had mild and moderate ME/CFS I’m not sure it’s something that even patients who haven’t been in the extremely severe state can fully understand. I was literally barely alive and I am confident that in short time science will prove that severe ME/CFS patients are barely alive and that ME/CFS patients in general are less alive mentally and physically than healthy people.

I think the only time a healthy person maybe experiences anything like this is shortly before actually dying. But in that case the person is generally in this state for a much shorter period of time and so remains much more connected to who they were, and their former lives. This is the state in which healthy people let go of their former lives and accept death. Which is probably one of the reasons suicide is so common for ME/CFS patients.

When I was severely ill I lost so much of myself. I was holding onto fragmented memories left imprinted in my mind of who I was but that person in reality didn’t exist anymore. The thought patterns and emotions and world views that created the person I was no longer existed. Yet I was still technically alive just enough to be conscious and bear witness to this state of non existence.

The suffering this causes is so profound. I can only liken it to one of the hell realms described in Tibetan Buddhism. A world full of nothing but pain, loss, agony and constant never ending challenges to holding onto what little I had left. Every mistake took me deeper into the void of nothingness.

As you know, I have recently gained back some of my mind and body. It feels like coming back from the dead. I’m in a strange state now where bits and pieces of Whitney have come back to life but most of me has not. I’m not able to get out of bed, eat or drink water or go out and feel the world again - feel that feeling that is being alive.

I have so far just been riding this wave of improvement and the new found abilities I have like being able to write and have some semblance of connection with the world again.

But some recent events have been a check on this improvement and made me realize how far I actually am from being Whitney again. I’ve realized that I don’t really know who I am anymore. I know who I used to be. But is that who I am? I guess I’ve realized that it is not.

The experience of being on death’s door for never ending years has changed me permanently. And yet I’m still not well enough to come anywhere close to fully inhabiting my own mind and body again. So I don’t really know who I am. I’m in a sort of limbo right now. Stripped of the person I once was and would have become but not able to take the experiences I’ve had and create a new person out of them. I’m still a ghost, suddenly no longer fully transparent yet at the same time unable to actually exist in physical form.

It’s so confusing.

While my new capabilities have improved my quality of life a small amount I realize how much I’m still suffering and how much is still missing from being a human being again. I’ve been so focused on my small improvements I’ve somewhat lost touch with how far away the world still is. When I think about it now, it’s hard for me to even imagine what it would be like to be fully healthy again. Out in the world again. Alive again.

I don’t know who I am going to become. But one thing I do know is how much the experience of loosing everything has taught me. I think ME/CFS is the greatest teacher I’ve ever had. So I have hope that when better treatments and then a cure is found I will be a much more conscious, wiser, more resized being. Whoever that person is that is waiting to be reborn is an incredible person and I can’t wait to see that person and be that person and contribute to the world with my whole being.

I think this is one of the most tragic things about the high rate of suicide among ME/CFS patients. These are people who have been through something completely unique to the rest of society and have a truly unique and profound perspective to offer the human race. When an ME/CFS patient ends their life so much is lost from the world.

We have seen the other side. And we need to stay alive so that we can join the world again and share with the rest of humanity what is really out there in the great beyond. We have an incredible understanding of what life is. How precious and fleeting it is. How little time we have. And more. These are lessons that most people never learn and we need to teach the rest of humanity how sacred the life they have truly is.

Donate to ME/CFS research at the Open Medicine Foundation to help stop the suffering of millions and end ME/CFS.

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