Sunday, March 17, 2013

Speaking of neuropathy

One of the many side effects of one of the drugs used in healing therapy for kanswer is neuropathy.
Tingling and that "pins and needles" feeling come first.
My fingers no longer sense the keyboard, so I type the same letters over and over.
It feels like there's a thick pad between my feet and the floor.
A thick pad of nothingness.
Then numbness strikes.
There is no feeling at all.

Last week, my oncologist explained to me that different doctors handle the neuropathy problem in different ways. The deeper the infiltration of the drugs in the body's systems, the more acute the numbness - and the less likely it is that feeling will return. Ever. However, the deeper the infiltration, some doctors think, the greater the effect of the medication on the kanswer. Some doctors say elimination of kanswer is more important than anything else. They say that numbness is better than pain, better than kanswer. Many of their patients, myself included, disagree.

From another perspective, when also considering surgery, radiation, tamoxiphen, and other treatments that are often administered, there are doctors who argue that permanent loss of feeling in the hands and feet is a high price to pay for one small part of the overall healing protocol. My doctor falls into this latter group - and I'm grateful he does.

Speaking of neuropathy naturally got me to thinking about feeling - or the lack thereof - in other areas of my life.

Sometimes I will wake up in the middle of a conversation and find myself listening to someone telling me stories of discoveries and disappointments, their breakthroughs and insights - and I realize that I simply don't care. I don't want to hear another story about another great website or book. I don't want more advice on how to deal with kanswer or marriage or disappointment or parenting teenagers or saving for retirement or a possible war in Iran or homeschooling or environmental awareness or whether or not I still drink coffee with sugar.

I'm numb. I'm deaf. I'm blind. And I can't taste anything at all. I'm overwhelmed. I'm underwhelmed. I'm exhausted. I'm living through the biggest battle of my life. I'm numb, folks. The pins and needles feeling is long gone. There's a big fat pad of nothingness between me and you, between my soul and yours. Neuropathy has set in, big time.

Worst of all, there are many moments when I wake up in the middle of a meal or at the end of a meal, after a workout, after a shower, after a marathon session of staring at a blank page in my journal and playing with the pen in my hand - and I realize that I'm feeling a certain numbness with regard to my own life. I know I'm supposed to be paying close attention, but I'm not. I'm supposed to be gaining deep insight about the things of faith, life, hope, health, balance, and grace, but I'm not. I'm supposed to be coming up with new and innovative ways to homeschool and parent, to be a wife and daughter, to live out my big dreams and impact others in my life and sphere of influence - but I'm not. I find myself slouching and shuffling through too many days not writing, not reading, not reaching out to my friends, and not taking phone calls. I'm numb. There's a big fat pad of nothingness between me and my own mind, my own body, and my own soul.

What I'm discovering these days is that many of the truths about chemo-related neuropathy apply to the numbness I so often feel in my mind and soul as well.

The longer the numbness lasts, the less likely it seems that the feeling will come back. Ever.
The less likely I am to do make the decision to stop the numbing treatments.
The less likely I am to want to feel again.
Because it's kind of nice to not feel pain or loneliness or fear or inadequacy.
It's nice to not be plagued with questions and doubts.
It's nice to have a big fat pad of nothingness between myself and life's greatest challenges.
Numbness has its benefits.

Not so much!
Besides I don't want to have a nice life.
I want a passionate life, a committed life,
a life of connection and love,
intimacy and relationship.
Numbness sucks.

Numbness allows people to step on nails or splinters, not notice, develop an infection - and die.
Numbness allows people to handle hot pots and pans and not feel the pain - but their flesh is still destroyed.
Numbness allows parents to watch idly while their children grow up and move away without ever enjoying deep and meaningful connections with them.
Numbness allows people to spend money mindlessly or save money joylessly and never understand either.
Numbness allows marriages to disintegrate because neither partner is willing to be vulnerable enough to express true needs, feelings, desires, or fears with the other. We shut down. We close ourselves off.
Numbness allows us deny our strength, our courage, our determination because we stop believing we are worthy of honor and praise for just how hard we work to stay alive and stay involved in our lives.
Numbness allows us to get to the place where we can't even put words to our desires and passions and longings because we don't allow ourselves to feel anything good.
Numbness allows us to say that nothing is wrong because nothing really is wrong. Nothing much is happening at all.
Numbness allows us to get to the place where we can't even remember what life used to feel like.
Numbness is not good.
Numbness sucks.

On Friday, I began to feel strange and unwelcome feeling in my feet. Pins and needles. Ouch. Walking was painful. I changed my socks. I changed my slippers. Nothing seemed to help. Ouch.

My fingers throbbed, especially my fingertips. And typing on my Blackberry caused me to wince. Ouch.

Crap! Here we go - more side effects.
Wait, Gail - this is what you wanted.

Feeling is returning. It doesn't feel great yet. It doesn't feel like it used to feel before all this happened. But at least I feel something.

Same thing with my heart.
I'm waking up again.
Listening to others more intentionally.
Listening to myself, my body, and my soul most of all.

Letting the tears flow.
Kanswer is lonely. Kanswer is scary. Healing is hard.
Nothing will ever be the same as it used to be. Nothing. Ever.
I'm trying hard to believe and accept that that is a good thing.

Letting the laughter come as well.
I have very funny friends. I have enormously generous friends.
My children's friends are pretty awesome too.
There is some funny stuff on Youtube.

There is beauty all around me and also within me.
Paint, crayons, markers, pencils, scissors, glue tape, paper clips, and needles and thread have been flying around here this week. It's fun being creative.
The sun is shining. Birds are landing on our deck.
Ants are making thousands of small red hills in our neighborhood.
Kristiana said it looks like my hair might be starting to grow back.
(We are boundless optimists, my daughter and I!)

I am accepting compliments from those around me.
For someone who just finished six rounds of chemotherapy, I do look pretty good.
It is pretty great that I can cook, clean, do laundry, walk the dog, go to the supermarket and take care of my children even during these long weeks of treatment.
I wish I didn't have to do all of this at this time
(I wish someone could make me numb to how hard that truth is...)
but I am doing it - and I'm doing it pretty doggone well.

Numbness has its uses. Numbness has its place.
But I'm tired of talking about neuropathy.
I'm ready for full sensation again.
I'm ready to touch and be touched,
to listen and be listened to,
to see and be seen,
and I am ready to taste and be tasted.

For the first time.


Karmen said...

Numbness only feels good for a season (in the spiritual, mental sense), Once the tingling starts you realize what you have been missing and that does hurt. I am glad the numbness is dispersing for you. Sometimes things come into our lives like a forest fire, burning down all that we know; good and bad. But when it burns itself out that is where the growth can begin, healthier, stronger, better.

Jan said...

You describe this so beautifully, and it certainly applies way beyond kanswer treatment. (And of course I'm sure you realize that the fact that you can describe it at all shows that the feeling is coming back.) Thank you.

Kristin Wolfe said...

Absolutely love this post! I just started reading after finding you on Momestary and I love, love, love your writing! So glad that feeling is coming back everywhere. Never let the numbness win!

Kate S said...

your writing always puts me in a different mindset, Gail. The contrasts are so powerful. Much love, sweet.

Lisa said...

I've read this with great interest. Have too many thoughts to comment here. Will email you soon!


DKP said...

I had femoral neuropathy from Nathan's birth, and remember the strange numbness followed by sharp 'good' pains that showed the feeling was coming back. The spiritual parallels you make are indeed profound, and encouraging to me tonight. I'm praying for you, Gail.