Wednesday, July 23, 2008

What Now?

I've been starting to feel so much better. I'm finally not in bed all the time and I'm getting stronger every day. It's been two years since my transplant and almost 2 1/2 since I started treatment. Three years since I became ill.

I had plans and a life. Huge glorious plans that were coming along perfectly when I suddenly became sick. I had a casual position at the university library. I had my routines where I saw friends and did things on the weekend. I used to run every morning and sit at the beach listening to the waves lap at the rocks before school. I was wrapping up my bachelors degree and was doing so well I was expecting scholarships to take my masters in New Zealand. I had worked long and hard toward all of my goals, my life was sculpted and exactly where I wanted it to be. I had long term dreams that were finally within reach and money in the bank. I felt so satisfied with life that I thought my feet may just spontaneously float off the ground.

Then things began to unravel a little. Next thing you know, I'm being airlifted to a major hospital.

As I my skin was grey and they were pumping morphine and chemotherapy into me in another city I couldn't help but think I'd be back in a couple of months. I honestly thought I'd roll back into my life and continue as I was. Not for a moment did I think my life was in danger or that I wouldn't get through it all.

I'm a wee bit stubborn and I don't give up. I was actually arguing with my professor from my hospital bed because they wanted to lowball my grade for missing the last two weeks of University and my grad project. I told them I would complete it as soon as I got out. I told them I'd worked too long to give up at the end! They bumped my grade closer to where it should have been.

I went through almost a year of active treatment and patiently waited and waited to get better. My unwavering sense that I would be okay eventually began to fade. Two years is a long time to wait. My GP said I should accept that I have a chronic illness and should speak to a counsellor on how to proceed with my life as such. I had a lot of mental adjusting to do. Sometimes accepting where you are at that moment is the right thing to do.

Now that all the fanfare has faded and my friends have wandered off, now that no one would even recognize me where I used to work, now that almost every piece of my old life is gone, I am feeling the weight of illness leave me. I have periods of elation, mental strength and a stubborn push to move forward. I also have periods of fear and loss.

I am lost.

I feel like an Etch-a-sketch that has been turned upside down and shaken. There is still the faint outline of where my life used to be.

How do I really know if I take a step forward, there will still be ground beneath my feet? How do I know where to go when the dreams and options I had are gone. I am not physically or mentally where I used to be.

I have the most intense feeling of that fear inspired question hovering over me, what now?


Michelle said...

Sweetie, somebody shared this with me, i'd now like to share it with you!!!

I would like to beg you dear Ms, as well as I can, to have patience with everything unresolved in your heart and to try to love the questions themselves as if they were locked rooms or books written in a very foreign language. Don't search for the answers, which could not be given to you now, because you would not be able to live them. And the point is to live everything. Live the questions now. Perhaps then, someday far in the future, you will gradually, without even noticing it, live your way into the answer.

Rainer Maria Rilke

Anonymous said...

This post made me sad and glad. I thought how much momentum I've been gathering recently (along similar lines to your previous life), and how if something drastic happened to me tomorrow, 90% of those people would forget I existed.

Enough self-indulgence - I love your writing, and I am hoping that whatever comes next for you is fantastic, beautiful, and exactly the kind of loveliness that you so richly deserve.

PS: I have abandoned my blog but am still alive and kicking!

Captain Skulduggery Dug said...

You might not want to hear what I have to say, but I feel I need to say it.

I read a lot of your posts and this is how I read it. You talk about your life as if the way you were is "your life" and that the last 3 years are a strange blip, as if you have been sucked out of that life and that your past life has been stolen from you.

Well the truth is, ALL of this, before, during and after the illness, is "your life". You are never going to be suddenly slotted back into the life that you had before you got sick, but neither have you been robbed of it any more than you will not be slotted back into the time you were 12 or 5 or 3 and because you can't be slotted back into that time those life times have not been taken away from you.

Me telling you this might sound somewhat harsh, but it's better to face reality than to live in false hope. There is nothing to stop you replanning the old goals you had and aiming for the very same things you wanted to achieve before you got sick. Re-planning them into the reality that is now, but you have to accept that you have changed and time has moved on and you may have to make the plans differently. This isn't a bad thing unless you let it be. It can be a massive opportunity to rethink what you want and need in life. You have had 3 years of strange, stressful and unusual living, but it was still your life.

Whatever anyone want in life all anyone can do is plan within the reality of what they are capable of doing and live to the full extent their body allows. If having M.E. for 22 years has taught me anything it has taught me that. To hope for the old life to come back will just lead to depressed, and leaving a person feeling empty and worthless.

I hope you know, by me saying all this, I'm not trying to be mean to you, because I think you are an amazing, fun, sassy lady. The only reason I'm saying this is, I see in you something I once had, I was someone who lost a lot of years just waiting for my old life to come back and it never did. All my dreams of being a well known microbiologist haunted me for many years of my illness and there was no hope I was ever going to go back to that life. I deluded myself for so long that when the truth finally came back to roost it almost killed me. The depression was so bad it felt like the only way out. I NEVER want you to have to go there.

I'm so excited and glad that you are feeling better each week. It makes my heart sing when I come to this blog and read that they are reducing your meds and that you are feeling stronger. So keep on fighting to get well and keep on being yourself, keep making plans and keep saying Fuck when you feel like it and I look forward to hearing all your news and all your plans coming to fruition. But, remember if you have down days I'm still here rooting for you.

Bee said...

Hey, awesome news that you have reduced your meds by 1!!!!!

Hang in there. I wish there were some words of wisdom to be said from me beyond - this must suck for you -. However, I do have many prayers and good thoughts for you and your family to have endurance.

Keep writing and I'll keep reading. Take care and sending lots of hugs your way.

Captain Skulduggery Dug said...

Sometime I wish I just kept my mouth shut. Please delete my last comment. *hug*

High Desert Diva said...

I'm going to give Lynne a little plug. She is very wise.

What now?

Continue feeling better, continue loving your boys, continue your life...altered, but still your life.

woolies said...

It's just a new you. It's still you. Give it time for the new you to adjust to life.
It's strange how when I 'let go' of what I assume to be factual things about my life, that I am able to move forward. Does that make any sense??