Careful…

Careful… it is a word that you could use to describe most of my life. I have always been careful. Careful to follow the rules. Careful to not break a bone. Careful to avoid sickness. Always careful.

Afraid… that is another word that has dominated my life. I have been afraid of the consequences that come from not being careful. Afraid of pain. Afraid of loss. Afraid of not being able to live my life as I want to live.

When the plane takes off, I worry about a crash… not because I am afraid of dying. Dying is easy. No, I have been afraid of suffering after surviving a crash. I have feared the broken bones, the surgeries, the inevitable changes to my daily life. And above all, I have feared a life lived with pain.

Same thing when it comes to cancer. I have thought about what I would do if I got a cancer diagnosis, and long ago I decided that I would much rather live my very best life (even if it is a short life) rather than live a long life of pain and sickness.

As you know, pain is not a stranger. I have been experiencing significant levels of pain on a regular basis since the age of 16. That is why pain is one of the few things I really fear. I know what it is like to be in the grips of pain. I know the desperation it can cause. I know that death couldn’t possibly be worse than trying to live with constant debilitating pain. And yet, despite my efforts to avoid pain… this is what keeps pushing its way into my life.

Now that I finally got my migraines under control and was beginning to enjoy a life that was not dictated by pain, it is suddenly back with a vengeance. And this time it promises to be my companion for the rest of my life. My condition probably will not ever kill me, instead it will slowly rob me of the life I currently have. The pain is already here, and it has already forced me to stop swimming. Soon, I suspect it will creep into other corners of my life… keeping me from participating in some of my favorite activities. In the space that was once filled with dancing and laughter… there will be pain.

Yes, I can have a surgery to remove the tumor… or rather, I must have the surgery to remove the tumor, but there are no guarantees that the problem can be fixed. I may undergo surgery and come out on the other side feeling fantastic… but realistically, I should view the surgery as an attempt to keep the problem from getting worse. Yes, I might have some weakness and pain for the rest of my life… but it could be worse. I could lose control of my bladder. Yes, I might even come out of the surgery with even more pain issues than I currently have, but if I don’t have the surgery I know that one day the pain level will increase to the point of being unbearable.

So there really is not “good” option… only different different shades of the same color… variations on the same pain. And I am left sitting here wondering what kind of quality my life is going to have from this point on… despite years of trying to be careful.

 

The Return of the Jabberwocky

I am back, and you have probably guessed that means the Jabberwocky has made a comeback – only this time it has decided to take a new form. Officially, it is called a Schwannoma, but you might just call it a spinal tumor.

When my doctor gave me the results from my MRI, I expected to hear that I had a pinched nerve. It never occurred to me for a minute that I might have a tumor. Of course, any time a doctor uses that word, it is going to shake a person’s world. But to be honest, it didn’t hit me the way you might think that it would. I didn’t feel the floor fall out from under me. There was no strange out of body experience where you hear the person talking to you, but you are some other place very far away. It was just me wanting answers and my doctor not really being able to give me any.

A couple of weeks have passed, and I have been doing my own research to make sense of my new reality. Although there is a chance that this is all going to turn out alright, there is also a very real chance that it will not. So from this point forward, this blog is going to explore my journey into the depths of uncertainty as I battle the Jabberwocky once again.

schwannoma-spine-mri-images

Images are not my own. I will post those later. If you, like me about a month ago, have no idea what I am talking about when I say Schwannoma… give this a try http://schwannomasurvivorsandfighters.blogspot.co.uk/2015/04/schwannomas-story-of-discounted-tumors.html

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Let’s get SUPERBETTER!

So, we want to get better, right? Who doesn’t! Well, Jane McGonigal thinks she can help us. Check out her TEDTalk and let me know what you think.

http://youtu.be/lfBpsV1Hwqs

Sylvia Plath

Sylvia Plath (Photo credit: Wikipedia)

Death must be so beautiful. To lie in the soft brown earth, with the grasses waving above one’s head, and listen to silence. To have no yesterday, and no to-morrow. To forget time, to forgive life, to be at peace.

SYLVIA PLATH, The Bell Jar

Death must be s…