Friday, December 5, 2014


It's not Friday. It's MRIday. 

Get it?  I crack myself up.

I did it again, did you get that one too?  I crack myself up, like I cracked my own spine from the inside a few years ago? 

This is the humor you get when I'm on a cocktail of Hydrocodone, Valium, Flexeril, and Baclofen.  You'll have to excuse me.

This morning I spent nearly two hours with my old nemesis, the MRI scanner.  I'm so stinking proud of myself for how I handled it that I could hardly wait to come home and tell everyone about it.  It was that good, really.  

They had Pandora so I could listen to music I specifically liked (thank you Imagine Dragons channel!) and did the best they could to make me comfortable on the super hard table, and did a really excellent job of preparing me for each step of the process and being honest about how long it would take to get all the pictures they need of both my cervical and thoracic spine. 

I was praised for doing well at each stage of the process and given lots of encouragement.  And then, much sooner than I thought, it was all finished, and I hadn't ever panicked or freaked out.  Not truly sooner, it really was almost two hours, but it hadn't felt like two hours.  The pain had been bearable.  The heat had been too warm, but not stifling.  I was very relieved when it was over, but not weeping and gasping.  It was as different from past MRI experiences as it could possibly be.

As usual, I'm hoping to learn nothing from today's images. Nothing at all. Not finding any reason for why I'm in terrible pain is better than almost all the actual answers to why I'm in terrible pain. When they look at my tumor and my spine and my ribs and shoulders and wherever else they go hunting for culprits, I hope they see nothing.  Then we can relax, and say this is probably just nerves regenerating and awakening, and after a few weeks of intense, searing pain, they should eventually calm down and behave.

This afternoon, I'm rewarding myself with a sandwich from IHOP for lunch, and recovering by spending my afternoon in my cozy bed with a little cup of M&M's and my husband providing a neverending refill service on my ice water to help my kidneys process the contrast dye out of my system.  I'm so fortunate to have him to help take care of me.  Here's to a well-earned rainy afternoon nap!

Tuesday, November 4, 2014


My son was frustrated about his PE class today.  "They asked us to do like, 17 different things and I was only able to do FOUR of them, Mom," he grumbled.

I gently prodded him with questions to get more of the story.  They apparently attempted a variety of gymnastic-style activities like forward tumbling and cartwheels and backward rolling and hands-free back-flips or some such things.  

I said, "I think only trained gymnasts can do most of those things, I'm not upset that you couldn't do them, but like your teachers, I just want you to give your best effort and try new things."

He was still surly. "Well next time they should pick some things that people can actually do!"

I struggled to keep my voice from breaking, because I've been in his shoes, and long before a "legitimate" reason cut short my physical potential.  I barely managed cartwheels as a little kid, and never got the hang of tumbling, because my neck and head refused to tuck properly.  And I was far too chubby far too early to ever do things like back flips and hands-free cartwheels.  

"Well son, to tell you the truth, it's not a bad thing that they picked a bunch of stuff you don't know how to do.  We need to learn how to fail in life.  It's as important as succeeding, maybe more.  Can you imagine what I'd do if I woke up unable to stand or walk and had never ever failed at anything before?  That would just about be one of the most devastating things that could ever happen to me!"

Bubby watched me, guarded, waiting to see what sort of story or point I was trying to make before committing emotions.  This is touchy ground for both of us; he has seen so much suffering and struggle in the past three years.  

"Luckily," I said, with a little smile, "I've had lots of practice at failing things.  Sure, it was still very very hard, but I was familiar with failing.  I could let go of standing and walking for awhile, and focus on something else, something reachable.  Like putting on my danged socks and shoes with those silly sock tools.  It was so frustrating, taking 30 minutes to put on a sock and shoe!  But it was possible, and doing things like that got me through while I kept failing at big things like standing and walking, until eventually I quit failing."

I could see the tension slipping away from his face, the smile trying to come out.  "So as long as you tried, I don't care if you can't do gymnasticky things.  I like the things you CAN do, like geology and dinosaurs and complaining about how solving for area only takes you 5 seconds."  He giggled and I rubbed his buzzcut head, then rubbed it again because it feels nifty when his hair is short like that, and he laughed some more.  

You can learn a lot of important things about life by failing.  Not the least of which is how to get over it.

Sunday, October 12, 2014


I've had so much to update I haven't known where to begin.  A years-long search has come to an end, opening a beautiful new chapter in our lives.

After an exhausting marathon of visiting houses we previewed online, involving lots of stair climbing and walking around homes not suited to my manual wheelchair, we finally found the one right closest-to-perfect-as-it-gets house for us.  And it was in our budget. And it was very new and well-kept and didn't need any painting or much repair.  And the owners fixed what we asked them to fix and were generous and cooperative with their negotiations.  So, with more ease and less expenditure than I would have dreamed possible, we bought a house. 

Looming over us still, though, was the shadow of the past: the townhome we still desperately needed to sell.  The center of our family that had become burden and cage instead of comfort and home.  Then the fickle hand of fate, that has so often thrown salt water in our faces, took this one exquisite chance to blow us a kiss instead - while we were busily closing and preparing to move to our new house, a buyer surfaced who made an offer on ours.  It wasn't the offer we were hoping for, considering we were already listing the house at a loss, but it was the offer we could live with, and we took it.  

We sweated bullets while the house went through inspections and appraisal.  It was in need of a lot of TLC, but again we were graced with good fortune: the buyer didn't ask for every little thing on the report to be fixed, just a handful of very affordable ones.  In a couple of weeks, after some repairs and painting, we will be free of that property without going completely broke.

That's not to say that we were able to swing this entire transition without any of fate's stinging influence, though.  We got our familiar slap in the face on moving day, when fate revealed that the mover who gave me my quote, for which I had requested full-service packing and moving, had deliberately low-balled me (and other customers) by providing a quote for just moving instead, and not pointing out the difference to me on the estimate.  I confirmed several times by phone and email that I was scheduled for a full-service pack/move on the specified day, and was assured that I was.  But on moving day we discovered that estimator had been fired and that I was only scheduled for a regular move with no packing.

It ended up taking an additional three days and double the original estimate price to complete our move, but at last it's done and we've begun to unpack and really enjoy our new home.  It's spacious and everything essential is on one level, so I have plenty of room to walk short and long distances, can enjoy regular bathrooms, and sit in my recliner before the comfort of our cozy gas fireplace.  I know this winter will mean many evenings gathered around that warm hearth.  As soon as I get a new shower chair to fit the shape and size of the master shower, I'll be able to enjoy long hot showers that I've missed for years while trapped on the sponge-bathing bathroom-less ground floor of the townhome.  We bought a lawn mower and trimmer, and yesterday I sat outside in my wheelchair enjoying the sights and smells of watching my husband mow our beautiful front and back yards for the first time.

We're about two blocks from the kids' new schools, so in the mornings and afternoons, weather permitting, I am able to take my power chair out and walk them to school.  Our neighborhood is fabulously accessible, with nice sidewalks and curb ramps everywhere.  Life isn't without mobility challenges, though, but now they are mostly about my own limitations and over-exuberance.  I spent so much time walking the first week we were here, I started to get blisters on my feet and bad swelling in them.  I had to learn to back off a little, to still give myself permission to lay down and elevate my feet now and then, and give my back a rest from constantly trying to do and see and be involved in it all.  I'm still working on finding the happy medium between exertion/doing/pushing the limits and resting/relieving/acknowledging my limits.  

We didn't buy a wonderful new, more accessible house so I could kill myself trying to live like I'm not disabled!  We bought it so I could live a better, more active life despite being disabled.  And that is what I will do.

Sunday, August 24, 2014

A Chilling Challenge

When news about the ALS Ice Bucket Challenge started circulating, I knew it would eventually find its way to me.  In 2013 I wrote about my personal connection to this disease, so I am certainly prepared to put my money where my grief is.  But the point of the Challenge is to raise awareness beyond just the people who were personally affected by ALS.  To seek out new individuals whose hearts will be touched by the terrible facts about ALS and its slow march to death, or by the light-hearted bravery of a friend willing to get drenched, and who in turn will open their wallets to in some way help researchers get ahead of this disease.  

I'm a bit of a stickler about conserving water, though, so instead of wasting a bucket full in a drought year, I'm just going to cut straight to the money.  

This carefully folded currency has been tucked away in my Guatemalan change purse for more than two years, perpetually waiting for some "special occasion" purchase I never could quite commit to making.  

Tomorrow President Grant will travel via ATM to my checking account, where within 24 hours I will finally give him a worthy purpose by electronically donating him to the ALS Association 

And I nominate you, beloved readers around the world, each and every one of you: within 24 hours please make some contribution to this fundraiser.  

You can give in many ways, by donating what you can afford, by using your social networks to reach out to more people to raise awareness, by partaking in the actual Ice Bucket Challenge and getting doused and nominating three friends.  Choose what you can do, but do something.  

ALS is like a train wreck happening in slow motion; you know there is great suffering and death at the end of the line, but you are powerless to get off the train.  If enough of us contribute, that will someday change.

Saturday, August 2, 2014

Casualties of War

So fades from this world another light.
Another flame burned out long before it should.
Darker are we that remain in this absence.
More terrible our useless wrath against the curse we can not defeat.
It is cellular annihilation, in the face of which our only defiance is to LIVE. 
Live ferociously, shine unapologetically.

Every breath, fierce;
every heartbeat, thunder.
But in this rebellion there is no solace.

Last night a brave little girl who should not have known what suffering is quietly released her spirit from struggling with cancer too relentless to overcome.  The only thing greater than my anguish is my anger, as ineffective as that is.  This child, my niece's daughter, was about the same age as my son.  She had a glowing smile and feisty attitude.  When the cancer in her brain returned, and doctors told her there was little they could do, she said, "Well I'm just going to fight that!"  

And oh how she fought.  Through dangerous, lengthy surgeries and sickening treatments and debilitating pain and weakness.  She battled despite the hopelessness of the odds and in the face of frightening and chaotic changes in her home life and family structure that would have challenged the patience of any healthy child.  Such herculean efforts should have been rewarded with victory, right?  The glorious remission, the sought-after No Evidence of Disease we all pursue so valiantly.  Such is ever the language of cancer: a lexicon of warriors and battles and elusive conquest.  With a culture of heroism and war even adults struggle to live up to, it's no wonder we experience such outrage when children are drafted in as soldiers against cancer.

This morning I saw a new side of the cancer front: volunteers.  Like nurses and doctors performing triage amid the hail of gunfire and boom of cannons, my six year old daughters saw Mommie's gaping wounded heart and volunteered their own kind of first aid.  Here are the sympathy cards they made for me.  

 My great-niece and I with flowers, looking happy.

Me weeping fountains of tears at my great-niece's grave.

I'm touched and comforted by their kindness, but brokenhearted that they ever had to participate in this damned war.  That any of us do.