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.

Monday, July 21, 2014

Like No One is Watching

When I get restless my legs shake or my feet twitch.  

Even when I'm happily occupied reading an article on-line or listening to my children read, my legs shake or my feet twitch.

They shake my bed, which rattles my bedside table, which clinks the ice in my cup and makes my cell fall off the table into my lap.  

I don't care.

When my legs shake and my feet twitch I know that I am still alive, still feeling wonderful feelings from this body that has not given up.  

When my legs shake and my feet twitch, that's just my new kind of dancing.

Saturday, July 19, 2014


I was never a runner.  

I mean, I ran around playing tag and hide-and-seek like most any kid, but I wasn't a serious runner.  And as I got older and my metabolism/endocrine processes malfunctioned with increasing severity, I also got bigger and became even less and less of a runner.  It was frustrating, that I ate the same things and in the same quantities (or sometimes less) as my older brother, but he stayed thinner than a fence post and I got thicker and thicker.  I would get a stitch in my side when I ran, and my face would get beet red, and it was hard to breathe.  My breath actually burned in my chest like it does when you breathe very cold air in the winter.  So I never liked to run, never volunteered for any 5K's or marathons.  I did a 24-hour Relay a few times, but I mostly walked my laps.  The Walk for Diabetes that I used to do was perfect because it really was a walk; running was totally optional.

In the big picture, therefore, it was not a great loss to me that I can't run anymore.  I was pretty devastated about losing the walking, of course, but now that I can at least walk a little bit, I'm not too broken up over not being able to run.

Today I feel like I've closed out a week of incredible marathons, though, and I'm damn proud of them.  It began earlier this week when we got notifications that two different parties wanted to schedule showings of our house (which is for sale) at lunch time.  It happened to be a day when my husband was teaching all morning and all afternoon.  This meant that he could take a quick break to pick us up during his lunch, so that the house would be empty for the showings, but he wouldn't be able to leave mid-afternoon to bring us back home.  We had to spend the whole afternoon at his work, which to our great fortune is a fantastic place to get stuck:  the library.  

The library is terrific because there are books for the kids (duh) but also play areas, with shapes and trains and dinosaurs, and huge expanses of safe, low-pile carpet for me to practice walking.  So while Daddy was busy teaching, we played, and read, and my little minions dutifully walked alongside me and pushed my wheelchair while I walked around --completely without canes or walker or holding hands or any other balance aid-- and the chair was right there ready whenever I needed a sit down break.  An entire afternoon sitting up in my wheelchair is a huge strain on my back, but while I knew I would pay with suffering and pain later, I was still pretty happy that I'd managed to last the whole time without serious problems. 

I had another endurance test today: my niece's birthday party was held at a family fun center about forty minutes drive from our house.  It began at 3pm, and was going to last until as long as my niece wanted to stay or until closing, so hubby and I planned in advance that I would probably have to leave before the party was really over.  We would stay until around 6pm, we decided, and then go get dinner before taking our kids to spend the night with their birthday girl cousin and getting me back home to lay down.  I recall checking the time when it was just after 5pm, but the next time I looked it was 7:08pm.  I was shocked!

It's not that I wasn't uncomfortable, because I was definitely feeling the strain in my neck and shoulders and back (and let's be honest, some of the worst pain was in my poor tooshie, it's not as cushioned as it used to be), but there kept being things I wanted to watch the kids do, and I didn't feel bad enough to want to go home and miss out on any of it.  I was using every trick I knew to cope, too: leaning forward periodically to relieve pressure in my seat, turning my head and gently rolling my neck to try to keep it loose, keeping hydrated, etc.  We ended up staying until almost 8pm, and everyone had such a great time it was totally worth it.  

Of course today was all about the birthday girl, who I can NOT believe is 8 years old already!  But even as proud as I am of that special young lady, I had a little pride left to marvel at my body, sticking it out for another hours-long marathon in my chair, attending the sort of priceless family event that I so often missed out on the past two years.  Me and my stiff muscles and my titanium-enhanced spine and my sore butt did our equivalent of a full-on, spartan-iron man-marathon this week, and like any great athlete we finished strong, and proud, and both grateful and amazed at what the human body can do.