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.

Transition Phase

March marks the one year anniversary of the completion of my radiation treatments.  Then, as now, I was thrilled to put one step behind me while at the same time apprehensive about what would come next.  It's not about cancer this time, though, that situation has been stable for some time.  The tumor is still there, and that's always worrisome, but for now it seems to be willing to behave, which is to say, it does nothing.  

This time around the relief is from finally being finished with the arduous preparations to sell our house, which included furniture upheaval and the inconvenience of having more than half our belongings relocated to a storage unit.  But now that all the rush and effort of staging is done, there is nothing left to do but worry.  Worry over how quickly the deadline to contract this house for sale is looming, and how devastating it will be to lose the perfectly situated house we want to buy over the delay of this one not selling quickly enough.

Hopefully, we will find a buyer in time, so that the next transition we face is the welcome one of settling into our new home.

"My heart has joined the Thousand, for my friend stopped running today."

Ever since I first read Richard Adams' book Watership Down, that phrase has struck me as one of the best utterances of grief I've ever come across.  In the made-up language and culture of Adams' rabbits, it means essentially that one's grief-stricken heart becomes one's own enemy (of the thousands of enemies who hunt rabbits) when one experiences the death of a friend.

Today I lost a friend I never really met.  Our acquaintance began when my disability began, when suddenly we had something in common.  Until then he'd been a friend of my husband, a friend who happened to have ALS, but ever after that he was someone who understood what I'd  been through and could laugh and complain about the same handicap world problems that I laughed and complained about.  He knew, for example, the intimate struggle of relying on caregivers for the most private and personal of functions.  Through the magic of the internet we could converse on these delicate subjects as if we were in the same room, even though we never were.

My friend was a beacon of strength and dignity and honesty in a world that wants to cover up weakness and silence the uncomfortably awkward realities of anger and regret.  I was afraid of death even though I knew I had good chances of living a long life with this cancer, and I found it difficult to express the level of anger and injustice I felt about it all.  But in my friend I found someone who faced certain death, yet vented his emotions fearlessly, painted their raw colors on Facebook for all who knew him to see, and still continued to have a life in which he did rather ordinary things like watch movies and long for romance.  He showed that life with catastrophic medical problems is still life, and can be managed one day at a time.  And for me, there was another message in his brutally honest status updates.  For me, his rage about a life with many regrets carried with it a silent plea to all of us to live our own lives more vividly.  To take chances, experience new and amazing things as much as possible, and above all else to never lose the opportunity to have love.  Take no day and no person for granted.

As his disease progressed, my friend knew great suffering.  But the opportunity to hear from him, albeit online, no matter whether he'd had a good day or a bad one, brought great joy to all who loved him.  He lamented that he was useless and a burden to others at the end, but I hope that now his unfettered spirit can feel the love that we all have for him, and shine all the more brightly for finally realizing that he wasn't a burden to us at all, but a gift.