Wednesday, September 03, 2008

Lyme in two parts: part one

I have Lyme disease. There, I said it. The world didn’t stop turning. Earth worms didn’t take flight and start eating peoples’ ears. The sky didn’t turn a decomposing shade of brown. Life on this planet didn’t come to an end.

Do you know that moment when you have just received news of a death of a loved one? Everything goes suddenly very, very still and for a moment your life stops. There is a small moment when you feel absolutely nothing but your senses are shaper than any blade. You notice every detail around you, every sound, every colour and every smell. Then suddenly, you see that the bloke across the road is mowing his lawn. Someone is coming home from work. A woman scolds kids for playing too loudly in the yard. People are going about their daily lives and none of them know anything about what you are going through. Your life has change, the world as you know it has ended and no one notices. You want some sort of sign that the pain you are going through matters. You want the thunder of a thousand angles stamping their feet in rage or a bird to stop in mid flight and fall down at your feet. Your life will never be the same again! How can the world just keep on keeping on?

I feel like this right now. I want to cry, I want run around in circles until the ground gives way and I fall into India, I want to scream to the heavens, “I’M SCARED AND I FEEL SO ALONE! I don’t know what to do and I don’t think I can get through this on my own.” It’s possible I could be overreacting. It’s what I feel; I don’t know what I should be feeling. All I know is that crazy bacteria have free reign throughout my body and I’ve got to find some way to stop them. I also know that I am grateful for the help and support of my friends and family.

Lyme is a tricky thing. Of course, it couldn’t just move in on its own, it had to bring roommates: co-infections. I’ve had this at least 20 years. That’s most of my life, so I don’t remember what it feels like to be healthy. I was more or less holding my own, very slowly going down hill as the years progressed. Then last year, my body gave up the fight. My immune system became over stressed and decided that it just didn’t want to play anymore. With the immune system on screensaver, the spirochetes had free range to do allsorts of nasty things.

I don’t remember much of my youth, but do remember I loved running. I haven’t been able to run since the third grade. Slowly and almost methodically, these little Lyme freeloaders steal different aspects of one’s life. The ability to run, the ability to breath and get oxygen (also known as air hunger), the ability to see, the ability to keep one’s balance, the ability to use your fine motor skills to do things like buttoning a shirt, the ability to eat your favourite foods, the ability to remember, the ability to work, the ability to spend time with friends, and the ability to do what one loves. These are just some of the things that Lyme takes from a person if left untreated. This illness has taken so much from me already. It’s like we are playing strip poker and I don’t know the rules because the spirochetes keeps changing them on me.

I’m frightened – NO! – I am terrified that eventually this illness will take everything away from me and there will be nothing left of me but it. I’m scared that I will identify with it; I will become one with the Lyme. It worries me that I will forget all the things that have brought me joy in this life so far. I want to be healthy but with the way things seem now, I don’t know if that will ever happen.

End of part one.


marydotmusic said...

There's a knitter in town, who's husband has lyme disease. She wrote about their life with it on her blog. Maybe you can get in touch with her and see if her husband has any contacts for you with a support group?

It is not the end though. You are strong. This emotion will pass and your family and dear friends will be there for you when you need it. It sounds like they already have.

Cheer up. :)

sarsbar said...

Big big hugs for you -
I hope to see you soon and give you a hug in person!

Josiane said...

You are totally allowed to be feeling the way you are; there is no "should (or shouldn't) feel like this or that". I've said it already, but will say it again: feel free to write to me if ever you need to vent, or share what you are going through with someone who knows what it is to have had well enough time to forget what being healthy feels like.
Identifying oneself with the disease is a risk, but one I'm sure you'll avoid - just by articulating this fear, you've already made yourself much less susceptible of falling into that trap. You'll soon be able to see again that you are much more than the disease - because you are. And you are much stronger than that disease, especially now that you know what you are fighting.
Take good care of yourself, and don't hesitate to let me know if there's anything I can do.