Notches on the Wall

There is a tendency, when people are ill or going through some kind of struggle, for everyone to become more protective of them.  Our loved ones want to save us from pain, or from great effort, or from worry, and try to create a bubble, a buffer between us and the ugly things in life.

This is both unnecessary and harmful.  The fact that we are facing troubles of our own doesn't make us immune to the worries and trials of others.  It's not just another burden to endure.  Suffering is a universal reality, a cosmic price tag for the pleasure of dwelling in a living shell that is aware of its surroundings and has keen physical and emotional perceptions.  That we respond to the suffering of others is what defines our souls, and separates us from the rocks and the trees and the plankton, which are made up of almost entirely the same molecules as us. 

Sharing the difficulties of others is not only what makes us human, but it makes us stronger.  It takes us outside of ourselves, diverts the focus from our own issues and reminds us that we are not alone, that other people struggle beside us on their own difficult climb to overcome whatever faces them.  That when we pull together, everything that all of us are dealing with gets a little easier to handle.   None of us is without tribulation; we are all etching our notches on the wall to mark the passage through difficulty of one kind or another. 

And sharing in the bad news and problems of others helps us feel normal again.  It is not normal to live in a vacuum, devoid of all negativity.  It's not normal to have nothing but hope and optimism, all day, every day.  Without their opposites these things have no real meaning anymore.  In order to have a really great day, you have to know what a bad day was.  My husband even says that he enjoys when people still come to him for help, because helping people is what's normal for him, and he doesn't like when they don't ask him for help just because they think he's already doing so much for me at home that he shouldn't be bothered to help anyone else.  No matter how wrapped up we are in each other and our own crisis, we can always sympathize with someone else, and want to help them, too.

We know you don't think we're weak, that we can't handle the truth.  You just want to protect us, you wish we didn't have to know, that all the bad things could be kept away.  You can wish this, but you must not make it be true.  We are not depending on you for protection.  We need you to shoulder the load with us, not for us.  Sheltered inaction leads to apathy and atrophy, the twin icons of emotional and physical weakness.  To be strong, we must know and do.  Honor us with the truth, and we will carry on, as all of us must do.

The Club

Have you ever joined a group that nobody wants to be in?  Usually it's involuntary, your joining, because you get assigned by some unwanted label, like "unemployed" or "single" or things like that.  That's what a cancer diagnosis does for you.  It makes you a card-carrying member of the club no one wants to join.  And what a strange club it is.

If the Cancer Club had a balloon parade like Macy's, breast cancer would be the enormous pink ribbon balloon, and every other kind of cancer would be represented by the people walking below it holding ropes, waving at the crowd in vain because no one really sees them, they are just holding onto the breast cancer strings.  It's hard not to feel that way about it when breast cancer awareness is such a powerful media machine, and everyone's talking about it and funding it and walking for it and running for it and companies are profiting off the lapel pins and the bumper stickers and the key chains and the rubber bracelets.  

I respect the walkers and the runners and the survivors.  They are real people with real cancer affecting their lives or their relatives and they need research and early detection and cures.  But I don't have a lot of patience for the people on the phone calling to ask me for money for breast cancer research.  I'm sorry, I tell them, but I can't give you money for breast cancer research.  I have my own cancer to fight, but no one's ever heard of it because it's not on the news and there's no fundraiser marathon and not really much research and this is usually about the time when the polite telemarketer hopes I'm feeling well and wishes me luck with my cancer fight and ends the call.  I feel kind of bad about ranting to these folks, because it's not their job to provide me with a telethon for my kind of cancer and cause copious research to manifest on my behalf, but I wish they could.

Sometimes I browse cancer blogs and articles, searching for someone with the same cancer as me, but I don't find anyone.  I want to find that camaraderie, like the sisterhood of the breast cancer warriors; I'm searching for the support group full of wheelchairs where the biggest accomplishment of the night is when someone is able to STAND UP for their "Hi, my name is _____ and I have spine cancer" introduction.  I find touching and inspiring stories, to be sure, but rarely anything that makes me feel less alone with this rare disease.  I don't even have the same lingo as my fellow club members.  I have not been assigned a Stage.  I don't have any real prognosis, not the slightest idea how long I can expect to live with this obscure tumor.  It could be decades.  It could be less than five years.  It might never metastasize, or it might spread.  It's anyone's guess. At what point do you get to call yourself a survivor, that term that everyone associates with "winning" the fight against cancer, if you're going to have your cancer for the rest of your life?  It's not going anywhere.  We're just watching it... indefinitely.

Don't get me wrong, I'm not ungrateful for the position that I'm in.  I understand that not knowing my prognosis is better than having a short one.  I don't envy the warriors suffering through chemo treatments.  I'm thankful not to be enduring that along with everything else.  I know that I'm not the only person with a rare illness that hasn't been researched enough, that there are others out there in the same boat as me wondering when they're finally gonna get a lifeline tossed their way.  And I usually focus on the positives, on the hope, on the things I can do instead of the things I can't.  But it would be dishonest not to show that there's this other side of things as well.  That sometimes I still pout, and like a rebellious teenager sent to her room I rage that this is unfair, and ask why me, and melodramatically lament that no one understands me. 

I'm allowed to have these moments, it says so on my membership card.

Old Demons

Nothing like a many-legged bug slowly circling you on your living room walls to remind you how disabled you are.  Never mind that bugs like that gave you panic attacks even when you could run to a different room to hide or grab a wad of paper towels and smash it to death yourself.  It's so much more terrifying when it crawls over the ceiling above your bed and you know there's nothing you can do about it.  To have your daughters become increasingly frightened by it because you're frightened but the panic is too strong for you to keep them from seeing it.  To have to call your husband to come back home from errands to save you from this terror because you can't take care of yourself.

When the panic fades, all you have left is shamed relief and tears.

Fight Songs and Win Songs

Music has always affected me profoundly, touched my very soul; it can make me shiver, can make me cry, can make me stronger.  I owe a debt of gratitude to the musicians and composers who have contributed so much to my life, most especially to my recovery and continuing survival in this cancer/disability battle.

To Bear McCreary, whose "Kara Remembers" is my courage hymn, that I listen to every time I head to the hospital for another MRI, where my fear demons await:  thank you.

To John Murphy, whose adaptation of "Adagio in D Minor" for the movie Sunshine is my personal physical therapy anthem, the song that expresses every ounce of struggle and triumph in my journey from wheelchair to walking:  thank you.

To John Mock, whose "Stone Table Dance" comforts and soothes me on the way home from difficult doctor appointments:  thank you.

To AWOLNATION, whose "Sail" has become not only my rock mantra for feeling strong and capable, but has also become the favorite headbanger tune for my three children:  thank you.  (Yes, they do scream "SAIL!" in relatively good tone and yes, they do get the timing right!)

To Christina Grimmie, whose cover of "Safe and Sound" gives me chills and has become the song my five year old daughters and I most love to sing together:  thank you.

There could be hundreds more to add to this list, but none of us has that much time, and my daughters are asking me to stop writing and sing with them.  If you do have a minute though, tell me what music motivates or touches you.

Nerve Problems

I used to have really, really ticklish feet.  My husband has perhaps never been so delighted as the day my endocrinologist told him that yes, tickling was a good way to check sensation in my feet, as long as while he was tickling them he also checked for sores.  (This is a reality of life with diabetes - you may not realize when your feet begin to get numb and sores go unhealed unless you check often.)  For a while, the damage in my spine caused my feet to stop being ticklish, because I could barely tell they were being touched at all.  What a tragedy for my dear husband!

But with much of my nerve damage recovering over the past year, I once again have ticklish feet.  (Hooray, he says!)  This doesn't mean that everything is hunky dory, though.  There are still some interesting misfires in my nervous system.  For example:

When my feet are massaged with lotion, the stimulation causes muscle spasms in my face, especially in the area of my forehead right above my eyebrows and around my eye sockets including upper cheeks.

While sitting in a partially reclined but mostly upright position, with my right hand relaxed at my side and propped up on a pillow, I will often experience unbearable nerve pain or itchiness or both radiating from deep inside my right breast and culminating with terrible aching in my right nipple.  This feels something like how I imagine wearing a nipple clamp might feel.  (No, I don't actually know.  Yet.  Maybe.  Probably not ever.)

While sitting upright with good straight posture, I experience itchiness in the parts of  my back that are covered in scar tissue from the spine surgeries and there is no relieving it with scratching, because this skin, while apparently capable of sending false itch signals to my brain, is not capable of perceiving touch i.e. scratching.  In fact it might be that the scar tissue is not sending the itch signals at all, it may be that nearby nerves are sending pain or pressure signals to my brain that are being incorrectly translated and categorized as itchiness in my scar area.  It's so maddening it can make me cry, and generally the only cure is laying down to relieve the downward compressing pressure within my spine.

My feet, especially my toes, and sometimes my lower calves, continue to be hypersensitive to touch.  Sometimes I can stand for them to be gently massaged or lightly touched.  Other times the lightest bump from the hand of someone walking past the foot of my bed is excruciating, like dropping a hammer on my bare toes.  

Not exactly as much fun as a barrel of monkeys, but at least these nerve problems don't throw poop and banana peels.  I mean, at the end of the day, having nerve problems at least means that I have nerves which feel something, and I'll take that any day.