Eating Lunch

I have not written here in a long time. Life has been happening, of course, time passing; but there have not been the kind of sweeping changes, dramatic challenges, or uplifting triumphs of the magnitude that used to drive me to this keyboard like a spawning salmon rushing upstream, desperate to share my existence with others, to live on in another generation after mine. Yet as I sit here, exhausted, as I often am, from just doing the most ordinary of things, I thought maybe it was time to let you know I'm still here. Still carrying on as best as I can, in case you, too, are still out there treading water in your struggle, or hefting yourself up out of a pit of trouble, or cresting the peak of your biggest hurdle, and hoping you're not all alone. So today I will discuss making and eating lunch.

***

I took a nap this morning, trying to recover from a day of outings that included a lunch, some grocery shopping, and a movie with my husband yesterday. But somehow I overslept my wake-up-for-lunch alarm, and instead woke up at almost 1pm. I sat up, taking less than the usual amount of time to let my brain prepare for standing because time was potentially of the essence: oversleeping could mean my blood sugar would be dangerously low, and also I had an even more urgent need to use the bathroom. So I stood up pretty quick, hoped I wouldn't lose my balance, put my crocs on because walking barefoot is a no-no (what if I stub my toe and it doesn't heal properly because I'm diabetic?), and went down the hall to the bathroom. Yes, there is an en suite in my bedroom, but that is my husband's bathroom, because the toilet is next to the shower stall, with nothing to lean on to stand up from it, and so the hall bathroom with its toilet next to the counter has always been my preference. There is even a designated corner of the counter that my daughters, who share that bathroom, are not allowed to clutter up, because it is the Corner For Mom's Hand to Push On.  

I did what people do in bathrooms, and then got up and washed my hands. Time was still ticking, but hopefully my sugar would not be too low, since I had not started to feel cold sweat symptoms yet. I reached my living room and greeted the dog, feeling guilty that I had slept two hours longer than planned and she had been bored and stuck inside that whole time. So before I sat down I let her outside with a toy to finally do her own business and some running around playing. Then I plopped into my recliner, and grabbed my blood glucose test kit. With great relief I tested at 100, still around 15-20 points above where I would really start to have problematic hypoglycemic symptoms. Food would certainly have to be my next priority, though. Time to get back up again.

I had planned to try these new crackers and cheese we picked up yesterday for lunch, so I went to the cereal/cracker/pop tart/cookie storage area and found the flatbread crackers. Then I grabbed a kiddie plate (they have edges that keep stuff from sliding off), a butter knife from the dining room table, and then the package of cranberry white cheddar out of the fridge. I loaded up all of this in my arms and took it to my recliner, where my back is happiest, thinking I would eat it there using my lap table. But I had mistaken the cranberry white cheddar for being something creamy and spreadable, whereas it was actually a true white cheddar (very solid) with pieces of cranberry in it, so eating that in my lap turned into quite a challenge. And the dog was starting to bark outside, which I never like to let her do for more than two minutes at a time to avoid upsetting the neighborhood. 

With a sigh, I gathered up all my lunchings and took them to the dining room table. I opened the door and talked to the dog for a minute, telling her to shush and be easy since I couldn't convince her to come back inside when the outdoors was so gloriously and unseasonably mild and sunny and fascinating. The sparse cranberries in my cheddar were not very satisfactory, so I grabbed some Thanksgiving cranberry sauce out of the fridge and spread it on the flatbread to supplement the moisture and flavor of the cheddar.  That was better but still not a stellar lunch. I was still hungry, so I got back up, went to the island, opened up some English muffins, and put one in the toaster.  Then I went back to the back door, to ask the dog, again, to either come inside or be quiet. She promised to be quiet, again. Walking back to the toaster from the back door, the entire width of the kitchen and dining room, was starting to feel like half a city block instead of the 15 or so feet it probably really is, but I made it, and found that my toaster setting had been too low and the muffin wasn't ready. I put it back down for another round. Then I walked over to the back of the couch, and bent over it until my head almost touched the cushions. I do this several times a day. It stretches my lumber spine without unduly bending my fused thoracic spine because my thoracic is supported by the width of the backrest and back cushions of the couch. Exhaling slowly, I felt some of the pent up lumbar tension that grows and grows all the while I'm standing start to ease, imagining the disc spaces between those vertebrae expanding and revitalizing with improved blood flow and being plump and fluid and healthy, because hell, maybe visualization can help stave off disc disease, who knows? And then, using arm strength not upper back strength (that would be another no-no), I did a sort of push-up off the back of the couch to stand up again, and returned to the kitchen to tackle the fridge search.

I had to rearrange a few things in the fridge to liberate some jam, which I set at the dining room table because it was becoming very clear that my back would not stand for letting me stand at the island to spread jam. (See what I did there? Haha.) Then I got out a sandwich baggie to put my cranberry cheddar into because it didn't come in resealable plastic. I got one for the flatbread crackers for the same reason, but they turned out to be too big, so I went back to the island and got a bigger baggie and got the crackers sealed up and put the cheese and the leftover cranberry sauce back into the fridge. The toaster popped back up, thankfully with done but not burned muffins this time. I went to the table for the plate I'd been using, back to the toaster, got the muffins out, and finally sat down at the table again. It took all of about 2 minutes to put jam on those muffin halves and eat them, after all that effort, but at least when that was done I wasn't hungry anymore. 

The dog was barking again, probably because all over the neighborhood trash trucks and recycling trucks and package delivery trucks have been bustling all day, typical Monday traffic that tends to set the neighborhood dogs on edge. I went out onto the back porch and tried to play with her, sitting on the step and letting her tease me by bringing her toy almost within my reach but not quite letting me have it to throw for her. I know, sometimes it's hard to tell which one of us is the pet.  She still wouldn't come inside, but at least she was once again quiet, so I took a deep breath, stood up off the step, climbed up the two stairs to the deck itself and came back inside. I put away the jam, and collected a package of holiday surprises I had purchased this weekend on Amazon from the front porch, which was probably why the dog had barked this time. Then at last I sat down in my recliner to inject my lunch insulin and catch my breath, and relax. 

Lunch had taken me at least an hour and a half. I feel wiped out. I have a couple more hours to recover from this before I get the kids and I fed dinner and ready to go out to the town Christmas tree lighting ceremony, where my daughters will be performing with their school choir. After this day, I will probably need another nap again tomorrow morning. Maybe I'll try a simpler lunch tomorrow, like fried eggs and one of those English muffins. Surely that will be easier, right?  Or more likely, I'll opt to take the easiest way out of all, and have a bowl of the least-sugary cereal we have, off-set with insulin and a pre-packaged cheese stick, which takes not even a tenth of the effort of today's ever-so-simple-sounding crackers and cheese. We'll see.

***

And that's how the days go rolling by, with little variations and occasional adventures, their fair share of high points and low pits, managing the energy bar and juggling what needs to be done each day, each week, with the help of my husband and my children, each of them a crucial pillar holding me up. I hope that you, too, have your pillars and your high points, that you carry onward and upward, that when you fall it is with grace and the resolve to get back up, and that your lunches are always worth your effort. ;)

The Only Way Forward is to Go Back

So much of Springtime is about looking and moving forward. The very earth itself seems bursting with anticipation, and in fact a few green shoots that couldn't wait for proper warm weather have already sprung out and now stand trembling and shivering in the chilly wind in our yard.  It is a time for growth, and change.

For me that change, and Spring itself, is psychologically punctuated by important anniversaries. In March, I celebrated the four year anniversary of my discharge from inpatient hospitalization and physical therapy. It wasn't the victorious homecoming I had envisioned, since I still couldn't walk, was still using a catheter and diapers, and required more care and assistance than I'd ever imagined needing prior to being, oh, say, about 100 years old.  But it was a glorious homecoming all the same, because it marked the end of almost six months of emotionally devastating separation from my family, lack of privacy, dearth of dietary choices, and all the other trials of lengthy hospital stays.

March also brought the anniversary of my friendship with a dear, funny man who died much too soon of a disease that made us share many disability tribulations and humorous fiascos. Of the many legacies he left behind - like friends who only know each other because of him, precious memories, ongoing joke memes - the one I try hardest to honor is to find humor in things, to let myself laugh (especially at myself) and try to get others to join me, and to give myself permission to rage against the horror and frustration of all of this sometimes; to feel ALL the things that having cancer and disabilities makes me feel and really acknowledge them without shame the way my friend used to do, the way he taught me.  Anger is okay. Joy is okay. Gratitude is okay. Outrage is okay. Depression is okay. Anxiety is okay.  Crying is okay. Laughter is okay.

Ever since I started going to counseling sessions with my onco-psychologist, I've resumed my old habit of journaling. Writing was a major factor in my first recovery from depression, almost twenty years ago, so I feel a lot of deja vu now when I sit in some public or private space and scribble in my little journal, simultaneously immersed in and separated from the scene surrounding me. Now, as then, the notes help me remember the moments that define each day, good or bad, that depression chemicals would try to erase from my mind shortly after they happen.  When you have a great moment, depression makes you forget about it, makes it short-lived. When you have a terrible moment but you survive it and carry on with your day, depression makes you forget that you were strong and that you coped.  But a journal remembers, so you can congratulate yourself later for those little victories, or allow yourself to acknowledge that something difficult was going on, that you felt pain or sadness or panic and that it was real and valid.

So even though it's Springtime and like everything else I want to move forward, it seems like the best way to do that is to go back, to the tools and the habits that worked before, like counseling and writing and sharing with others. To remember that I've beaten depression once, that anxiety is manageable, that my support network is strong and constantly present, and that I will see the other side of all of this eventually.

Impossible

At the new year's beginning is a natural time to do a little goal-setting in our lives. But even if it weren't January, I would still have been thinking about goals lately because my psychologist asked me to try to develop several concrete, specific goals for our therapy sessions. It was a daunting task, though it sounds simple at first, because with depression it is often much easier to define and measure what is NOT happening than what actually is. Many patients will describe their symptoms in these negatives: 

• I'm not as interested in what is happening around me.
• I'm not as good at rolling with the punches or adapting to situations as I feel I should be.
• I don't feel cheerful as often or have my usual energy levels.
• I can't recover my good mood quickly or easily after experiencing something sad or upsetting.

We describe depression as a sort of vague absence: of happiness, of cheer; an emptiness where enjoyment of life should be.  With evaluative tools like those, how do we measure progress towards mental health? I considered this a great deal over the holidays. How could I set goals for getting better?  What do I think being less depressed would look like?  So initially my goals were sort of weak and searching for direction. I would like to cry less often. I want to have fewer days where I'm overwhelmed, by sadness or anxiety or both. I want to dwell on cancer less, give less of my time to that disease in the form of worry and fear for those I care about.  It's not that I want to stop caring for the fates of others, far from it, I just need to be careful not to dwell on those worries and cares too much.

But I had a feeling I didn't quite get it yet, that I had not grasped what my therapist was trying to teach me. So I kept mulling it over. I started to think about when I had been recovering from depression in the past, and how sometimes to feel better, one had to do the things one used to do while well, even if one didn't feel like doing them, and the act of going through the motions brought about change in the brain. The chemicals would flow even if your heart wasn't totally in it. And little by little you could start to change your brain chemistry by acting out the life of a healthy you. I thought about the things I would be doing if I wasn't letting depression demotivate me, and I thought about how successful I usually am at setting physical goals.

So as my next therapy appointment approached I started thinking of other goals, things that I could sit back and look at and say, "Hey, if I accomplished that, then I must be feeling more motivated lately, I must be starting to get better." I set a goal related to walking distance, and a goal for getting my family outside and more active. I set a goal to spend more time with my face-to-face and online friends, replacing some of the time I spend feeling alone or isolated. As an introvert I highly value alone time, but there can definitely be too much of a good thing, especially when you're struggling with depression. 

When I met with my therapist he was pleased with the level of thought and care I had taken to evaluate his request, and in some respects that was the whole point: to invest energy in discovering what I define as a healthier, recovering self, and find ways that we could measure progress towards that state. So many people struggle to realize that anything is being accomplished by their depression treatment methods because they haven't yet defined what success will look like, and are easily discouraged when it feels like nothing is changing. Now we have eliminated that hurdle, and I felt really positive about the direction this therapy is going.

During this introspective period, I had occasion to think about impossibility a few times. It's very easy to negative self-talk yourself into thinking that something is impossible. Certainly this challenge of coming up with measurable goals for mental health seemed almost impossible at first, and I also recall my kids complaining that this or that task was impossible recently, too. There is a quote by Lewis Carroll about impossible things: 

Alice laughed. 'There's no use trying,' she said. 'One can't believe impossible things.'
'I daresay you haven't had much practice,' said the Queen. 'When I was your age, I always did it for half-an-hour a day. Why, sometimes I've believed as many as six impossible things before breakfast.'

When I was talking to my children about it I twisted the quote a bit to fit the situation. "Impossible is all in your head, it's a matter of perspective. I do three impossible things everyday before breakfast!" Of course they were confused and thought I was tricking them, until I explained that at one time, it was the professional, medical opinion that I would never stand or walk again. It was impossible. Yet every morning I stand up, use a regular toilet without help, and walk across the house to get breakfast. 

As much as it was a good lesson for the kids, it was also a good reminder for me. Depression makes you feel overwhelmed, despondent, fatigued, and sometimes anxious, and facing all of that you can start to think that recovery is impossible, that healthiness and happiness are impossible. Take a moment to remember the last impossible thing YOU did, and maybe you'll recapture some of your own fire, your motivation to keep fighting. Then sit down and figure out what your life as a recovered patient will look like, (be specific!) and use that to set goals you can actually measure your progress by. Planning what the changed you will be doing and feeling is a huge part of accomplishing the change.

Rollercoaster Summer: Cancer Sucks

Sometimes cancer is a well-formed, well-defined tumor that can be measured and quantified in neat, orderly, precise ways. Other times it is a tentacled monster, infiltrating, poking its deadly fingers into places it doesn't belong in ways that are impossible to measure and track. Regardless of which type of cancer you have in your body, I suspect for most of us cancer affects our lives in the second kind of way: we struggle to keep it contained or compartmentalized and instead it pervades nearly every part of our existence in stubborn, annoying, or even alarming ways.  That is how I've been experiencing it lately, at least. 

I feel like it's all around me constantly. People I know and care about are losing loved ones. Loved ones of mine are facing the relentless decisions about treatment options and side effects and quality of life and always the urgent rush that goes with it.  Decide quickly, decide now. While you are waiting it could be spreading those fingers around, it could be killing you.

Maybe it's because of all the losses being suffered, maybe it's the inevitable downhill slide after years of riding the stress and adrenaline high of managing the immediate medical crisis from 2011 to now, maybe it's mid-life hormone changes, maybe it's all of those things, but for most of the past year I've been feeling a sneaking, creeping, insidious invasion of another kind, like an emotional, cognitive cancer: depression. I recognize the warning signs from my experience with the illness in the past, so this time I didn't wait nearly as long to ask for help.  This summer I decided to talk to my oncologist about it, and get a referral.

This week I met with a psychologist at my hospital's cancer treatment center who specializes in oncology patients, who understands the ways in which depression affects how we cope with cancer, and how cancer and it's treatments and complications affect how we cope with depression.  I'm going to continue seeing him every couple of weeks and I have a good feeling about him, I think he will help me help myself quite a lot.

I feel like it's important for me to point out that I have a great support system. Needing professional psychological help doesn't reflect badly upon your family, friends, significant other, colleagues, etc. It doesn't mean they have somehow failed to adequately comfort and support you. It doesn't mean that you are weak or bad at coping, either.  It just means that sometimes you need to see the right doctor to treat your mind and soul, just like you need the right specialist for your cancer type or your endocrine health or your heart disease. 

If you feel like anxiety and worry are overwhelming you, if you have trouble sleeping or sleep too much, if you struggle to concentrate and detail recall seems harder than normal, if you feel listless too much or like sadness is your default emotion except when something specifically cheers you up, if you feel unusually angry or short-tempered a lot of the time, and don't understand why you keep snapping at people, if you frequently think and worry about mortality and death, if you notice your appetite has changed or you've gained or lost weight without planning to, it's possible that you could benefit from talking to your doctor about what you're experiencing. Don't be afraid to be honest and start the conversation. It doesn't have to lead to medications or therapy, if those words frighten or make you uncomfortable. At least open the door with your care team and let them educate you about the myriad ways to relieve the symptoms of depression and put more quality back into your quality of life. You deserve to live as your best self.

Rollercoaster Summer: Hotels

When you are living your life, it flies by you in the blink of an eye. With hardly a pause to breathe or digest the events, you can sit down one day and realize that a fair portion of the year has sped past you in a blur. Such was the case with this summer.  It's been a hell of a ride, with thrilling high points as well as lows. To describe everything that we experienced will seem like a novel, so I'd like to break it up into a few subjects that will make it easier for me to process it all and explain it coherently. I hope you'll bear with me.

At the beginning of summer, through a combination of luck and savings and good credit and persistence and hard work, my husband and I acquired a wheelchair lift van and got it into good enough shape to plan a trip to California to see my family. It's a fairly complicated undertaking, given my particular mix of ability and disability, and the size of our family: two adults, and three kids.  

The last time we traveled to California our twins were three years old, sleeping in playpens that we brought with us, so it wasn't difficult to find hotel rooms.  And I was sleeping in beds at that time, that helped, too.  This time we would discover that two adults and three children aged 7 and above are not permitted to occupy most ADA hotel rooms, which are typically suites with a single king bed and a pullout couch and only allow four persons. 

Of course having an ADA room with a suite was preferable because we could bring my chair in and I could sleep semi-upright on the couch instead of in miserable pain and discomfort on the flat bed mattresses, but the only time we got into one of those rooms was when the desk clerk forgot to ask how many people were in our party.  The rest of the time we were offered choices including switching to non-accessible double queen or double king rooms, or taking the ADA suite and booking a second room for the overflow of people. This would, of course, double our hotel expenses for the trip, which was out of the question. 

We decided the best scenario was to book the double queen or double king rooms that had pull-out couches whenever we could, and I would make do on a flat bed whenever the couches weren't available. Sounds simple enough. Except it turned out that the particular weeks of our vacation turned out to be monumentally busy and full of huge regional events that left us facing No Vacancy signs at every turn. There was a softball tournament near Denver, a monster truck rally in Nevada, and after driving more than an hour longer than we planned the first day just to find a hotel with room for us, we realized we would need a strategy in order to continue our trip successfully. 

When I'm driving, I like to just go as long and as far as I can, letting my husband spell me now and then, and find somewhere to stay when I get too tired to continue, often at nearly midnight or even later. It became clear that this would be impossible on this trip, and we would need to call ahead to towns we thought we could reach that day and see if they would have rooms. Most of the places we usually stay on our way to California, like Laramie, Rawlins, Elko, and Wendover were either completely full or didn't have big enough rooms left for all five of us.  So after sleeping an hour north of Denver the first night, we found that we could get no further than Salt Lake City the second night unless we drove all the way to Reno, which was too far. It felt completely strange to stop driving for the day at dinner time, but at least that way there was time for the kids to enjoy the hotel pool before bed time.

The next day, we got up and got moving by around eight, and I had realized that it was going to be a very long day.  You see, if we drove an ordinary 10 hours or so, including meal and restroom stops, we would be stopping for the night in the vicinity of Sacramento, a scant three hours from my hometown, and I knew I couldn't stop that close. Not when I hadn't seen my parents in three years. We would just have to drive the whole rest of the way in one day: almost twelve hours of drive time, plus two or more hours spent on stops.

So we did. And it saved us from having to find another hotel room.  On our return trip, we were prepared for how busy everyone would be and planned our stops for each night, calling ahead and pre-booking rooms as we went. We went all the way to Salt Lake again the first night, and Denver the second.  It was an important lesson that we'll remember on our vacations from now on: a family of five, and one with disabilities to consider, is no longer a family that can fly by the seat of their pants and take chances on last minute hotel plans.  Like so many other things we grapple with, we've got to plan ahead every detail that we can, because our situations are too inflexible to accommodate true spontaneity.

Coming up next in the Rollercoaster Summer series is part two: Accessibility.

Rollercoaster Summer: Accessibility

One of the most frustrating things about traveling outside of our home turf is not knowing what kinds of accessibility issues we'll run into when we go places. In your neighborhood you learn where the sidewalk ramps are, you know all the good parks with paved paths, what restaurants have table spacing that allows for wheelchair occupants to not feel like inconvenient roadblocks, and where all the decently clean handicap-accessible public bathrooms are located.

When you venture out, the world is full of unknowns. For some this may be exciting, for others stressful; for us it's a complicated blend. We're proud of ourselves and exhilarated when we conquer a new situation with accessibility challenges, but the constant strain of worrying and planning can really wear on us.

What I hope you'll learn from our experience, though, is that it's worth trying. We saw and did things as a family on this trip that are priceless and irreplaceable. I couldn't always participate as fully as an able-bodied mom would, but I was there, as close as I could be, and the kids got to make wonderful new memories with me and their dad. 

We went to the beach even though I had to stay on a paved path at the top of the bluffs. The kids got to feel the power of the waves and run scared and excited back up the sand, then swim and wade in the safer tranquility of the river and play with sand castles.

We saw gorgeous botanical gardens where lengthy trails have been especially designed to be accessible for manual and power wheelchairs, including taking the steepness of grades into consideration. It even had a trail out to the edge of the headlands with gorgeous views of the ocean.

My husband and I walked a whale and seal watching trail that was entirely elevated on a wooden platform so the whole circuit was accessible.  We saw seals sunning on the rocks, and sat at lookout points enjoying the wind on the headlands and the salty spray in the air and just being together at the ocean.

We took our kids to Confusion Hill and the Drive-Through Tree, where they played in the Gravity House and took a train ride to learn about California's logging history. I waited at the bottom of the hill for those, with my mom to keep me company, but I could go through the tree no problem. 

You might notice in this photo, however, something missing from my power chair: the legs. That's because, one night when we were taking the kids to the carnival that came to town for the Fourth of July, we ran into one of those unexpected accessibility mishaps. We had to park several blocks from the carnival, and it was well after dark. And all of the sudden, the sidewalk ended at a side street with no ramp. I had to backtrack to the nearest driveway we'd crossed, but in the dark I couldn't see that the there was a two inch drop from the driveway to the street, and that the street met the drop at a steep angle.  When I drove off the driveway onto the street, the wheelchair legs hit the street and bent under, snapping the metal of one of the leg attachment points right off.  If I had been someone who can't quickly pick up their feet, I would have broken my ankle quite badly.  We were extremely fortunate that I could jerk my feet up before I was injured, and that it turned out we were able to replace the leg mounting bracket a couple months later for not much more than a hundred bucks.

Maybe not everything went perfectly according to plan, but I think you can see from these few images that we made memories on this trip that we'll treasure for a good long time, and the mistakes and mishaps and worries were absolutely worth it.  Go forth! See and do! Because another thing this summer has been teaching me is that the future is promised to no one, and you need to make your moments count while you can.

Next up is Rollercoaster Summer part three:  Cancer Sucks.

Chronic Pain

featuring guest author Rachel Cunning

Rachel Cunning knows a thing or two about living with endless, sometimes invisible pain. Please join me in reading and sharing her in-depth look at the ways pain changes us, and the ways we change ourselves to cope.  You can learn more about Rachel and follow her journey at https://casulamellita.wordpress.com/
And when you read this, if you are someone lucky enough not to share in this experience, remember that there could be numerous silent sufferers around you, who would be grateful for a little more kindness and a little less judgment in the eyes of those who look on them.  Thank you for taking a moment to see inside the struggle we live.

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Living With Chronic Pain

When I was 23, I did what I had done so many mornings: I woke up and stumbled off to make coffee. Except that morning was different. That was the morning I fell down a flight of stairs, landed on my spine as I slid down each step, eventually lost my job as a result, and spent countless hours in and out of doctors and hospitals, culminating in a back surgery where I was cautioned that a possible outcome of a poor surgery would be paralysis. Such side effects are rare, and my surgery was fairly successful. Until recently, I had managed my back issues because I was able to foresee my triggers and react accordingly. Lately, however, my back pain has been managing me.

Pain is a mostly invisible phenomenon—all neatly bundled away inside your nerves and your brain. Pain is only easy for another person to recognize at its extreme: when another person goes rigid, clenches the jaw, gasps audibly, cusses, grabs a body part, or suddenly has some kind of horrific accident that can only mean terrible, terrible pain. Unlike this kind of excruciating pain, every-day pain is almost completely invisible. A common cold, on the other hand, is easy to notice. Your friend has a telltale red nose and is clutching a box of Kleenex; she may be coughing and sneezing excessively. Nor is it hard to miss when an acquaintance breaks a bone. Because I “seem” fine, people assume that I am fine. I am not fine.

At my most recent doctor’s appointment, I was asked if I were ever pain free. I sat (in pain) on the bed and thought hard about the question. I know that I’ve been without pain. I remember when it wasn’t a daily part of my life. I just can’t remember any time since August where I haven’t had pain. Everything I have done since then has been done with some degree of pain. Some days are good days; I barely notice the pain, and I’m perfectly functional. Other days, it’s hard for me to focus on much else.

This pain I have lived with is mostly invisible. Even on bad days, it’s invisible to others in the grocery store when I have to ask my husband to push the cart for me because I can’t anymore. Or if I am shopping without him and I end up with a bum cart that pulls to the left, it is no longer a mere nuisance. This bum cart is an ordeal as I exert constant pressure to steer the cart straight; every movement, every step, sets my back ablaze as my nerves scream their protests. On such days, I can’t even help put groceries away. Bending over to unload the groceries, to open the bin to stash vegetables, to lift the half gallon from the floor or counter to the fridge is just not possible. I am filled with rage at myself, at my back, for betraying me as I watch my husband both unload the car and put away all the groceries without a hint of complaint while I stand idly and uselessly by.

Sometimes my pain will look like annoyance instead. My poor dog Alke has begged every day for the last week and a half for a walk in the morning—one of our favorite morning activities together after my husband has left for work—and I’ve had to reject Alke’s plaintive eyes each morning. You see, the last time I walked him, he pulled too much. He’s normally so good on his walks; we worked so hard with him to not pull and to walk nicely beside us. But whenever he catches a whiff of anything worthy of investigation, if he so much as dips his nose to smell the grass, the pressure on my lower back intensifies, and I yank on his leash in frustration, say “NO” loudly—such a small infraction, to smell a clump of grass—and try desperately to keep it together until I can get back home as with each step and each small tug, I feel my back become angrier and angrier. Instead, I throw Frisbees for my dog, toss his ball, and give him endless cuddle sessions, but he still lets me know each morning that he’s ready for his walk now, please.

Since my pain is in my lower back, it very literally affects everything I do. Sometimes my attention wanders in meetings because I don’t want to have to be that person in a meeting who has to stand and walk around. Even then, sometimes I’ll stand, and I’ll be distracted by the pain in my back. If I’m having a bad pain day, I can’t tie my shoes without pain. I can’t sneeze without pain. I can’t lie down without pain. Even on good days, I can’t go on a road trip or get on a plane without knowing by the end that I will be in significantly more pain than when I had started the journey.

I have tried so many different strategies to alleviate the pain over the years and particularly since August. For starters, I’m incredibly conscientious and responsive to new triggers of pain. I have, for example, given up the dead-lift from my weights routine after it caused too many problems. I have a new standing desk at home and at work. I’ve tried prescription strength pain medication and muscle relaxers, and I was cautioned by my doctor that if I used the heating pad much more I could give myself permanent burns on my back. I’ve spent a ridiculous sum of money on physical therapy, and I’m beginning to try massage therapy too. Most recently, I had a cortisone injection into my back under sedation. Some of these things help, temporarily anyway, but I live in this constant state where I wonder what will set my back off next, if I can push the grocery cart this weekend, when I can walk my dog again, whether I will be able to lift my maybe-one-day child into the air as she coos in delight with her fingers stretching toward the sun.

This dark side, this despair-filled bleak vision of the future, may seem melodramatic, but it lurks as a constant pessimistic phantom when I feel the every-day ache, like a dull spearhead is embedded in place of my spine even now as I sit to write this. Sometimes this despair feels more like a dire premonition of inevitable calamity on days when I can only clench my teeth together tightly as I walk—just walk—through the grocery store as my husband pushes the cart ever so slowly beside me.

I am also always mindful of the fact that my pain used to be significantly worse than it is now. Before my first surgery brought significant relief, the pain would seize me in fits that left me incapable of either moving or speaking, as if every nerve in my body were radiating waves of lightning instead of relaying information. During one trip to another doctor’s office, I reached a breaking point. I was under so much strain from dealing with the spasms of pain, but I was also too stressed to handle the agony of another failed cortisone shot. As my blood pressure rose to unnatural levels and I felt my anxiety spiral out of control, I asked what my other options were besides the shot because I just couldn’t subject myself to another one. The doctor wheeled on me—my 23-year-old self, in so much pain I couldn’t work anymore, couldn’t drive my stick shift any more (I can never own a manual transmission again) and absolutely terrified. He raised his voice in frustration and replied that I could lie in bed 24 hours a day and never move again and that I could have a catheter and people to feed me and that he was positive that I would be fully healed after 6-8 weeks of such a lifestyle. He narrowed his gaze and asked rhetorically, “but you wouldn’t like to live like that would you?”  I managed to tell him no and to leave his office with as much dignity as I could muster through my tears, but I think of what he said that day far too often. I think of it anytime I lay in bed, desperate to roll into a more comfortable position and wondering how hard I must grit my teeth to endure the change, whether it’s worth the pain to roll over to try to sleep a little better.

I fear that I will lose my ability to walk—let alone carry a backpack of supplies over alpine meadows and arduous mountain passes—as some days I do struggle to walk. Instead of a normal gait or pace, I lumber around like an elephant, swaying and unable to twist or turn with any kind of flexibility or natural motion. Other days, I walk so slowly that I am frustrated with my snail-like pace. These are the bad, extreme days, of course, but I am only 31 years old. What will my mobility be in ten, thirty, or fifty years? What will I have to sacrifice to the demands of my back? How will I manage when I cannot join my husband on backpacking trips? Would I be bedridden from the pain if we were to have a child? These questions and many others haunt me in my dark moments of weakness and doubt. The real agony of living with chronic pain is not the pain itself, its irregular ebbs and flows of intensity, but with the terrible crushing fear of a future that is limited, shaped, and filled by that pain. ~Rachel Cunning

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Thank you, Rachel, for putting so well what many of us may struggle to express.  I hope that as your journey continues, whether things get better or worse, you will know that there are people out here like you who understand, and who hope fiercely that you can create moments that make it all worthwhile. ~MrsC

Just Ask

A sad fact you will eventually learn when you are coping with becoming disabled is that sometimes even other disabled people are full of judgement and bias.  I don't see it all the time, but often enough to never forget that it's out there. 

Here's a recent example:  as we were leaving a restaurant and getting into the car, a woman stood on the sidewalk in front of us, waiting while her husband sat in their car in the parking lot. He was waiting to take the handicap spot we were about to vacate.  This woman watched my husband load my wheelchair into the car while I got buckled up and turned it on.  From the driver seat, because I always drive.  No big deal, people watch us load our family in and out of the car all the time, and I often get weird looks about it that I try to ignore.  I get it. It's hard for people to understand why I need a wheelchair and a handicap parking spot if I can drive and stand up and take the few steps from the car to the chair and back again.  But this lady didn't stop with a questioning look or a confused look.  She stood there and glared at me, without looking away.  Unashamed, righteous loathing just streaming from her eyes right into me. 

When my husband finished loading the chair and got into the passenger seat, he and I made eye contact, and immediately we both knew that we both had seen the way she looked at me.  He said, "I almost walked up to her, right to her face, to bark at her whether there was anything she'd like to ask me about my wife's spinal cancer."

I breathed a sigh of relief.  Relief that he was ready to defend me but had opted not to create a public scene that I would have found embarrassing even if it was justified.  "I know what you mean," I said. "Apparently I'm not handicapped enough to earn a decal parking spot in her eyes, even though she can stand there for five minutes to glare at us, and her husband can obviously drive as well as I do."  

I backed out of our spot and drove away from there without speaking to them, but I couldn't stop thinking about it.  I'm tired of getting those glares, and the skeptical looks, and the dismissive eye-rolls.  "Maybe the answer to how this keeps happening is to become a kind of public spokesperson for myself.  Just get it out there and be obvious about it," I wondered while I got on the freeway.  "Put a sign on the back of the wheelchair that says something like 'Ask me how many times I've learned to walk' or 'Feel free to inquire about how EHE cancer affects my family.'  Maybe I need to just willingly explain it to people, wherever we go, and that will help them understand and maybe they'll donate to EHE research or something."

But it's a frightening prospect.  Am I really ready to take on being a public figure for something this big? Do I know enough to be a good ambassador for EHE patients? What about when I'm feeling shy or depressed and I just don't want to talk to strangers about it? What if explaining the outlook or prognosis of many EHE patients to strangers only serves to make my own children more afraid of what will become of their mother?  What if EHE patients who aren't disabled by their disease would rather have a different representative, someone less focused on life with a handicap and more fervent about early detection and experimental treatment options?  There are so many facets to this disease, it affects different patients in so many different ways, it seems unlikely that any one person could hope to represent EHE.

Thank goodness no one person needs to.  The EHE patient community is already out there, reaching out to strangers with EHE t-shirts and wristbands and fundraisers, spreading the word about the myriad challenges of EHE and drumming up public support for more research.  Bless their determined hearts!  So I remain free to maintain my primary focus on the disability side of my situation, working in my Homeowners' Association and my community and my greater metro area to promote better access and quality of service to handicapped citizens.  So allow me to take a moment to explain why I still need and make use of a wheelchair and handicapped parking.

Imagine that your spinal cord is an analog telephone line.  For you younger readers, that means it requires a physical cord to transmit a signal from point A to point B, unlike a Wi-Fi system where phone signals can be broadcast through the air without a cord or phone line.  In this analogy, data from all over your body such as temperature, position of your feet, whether your muscles are flexed or relaxed, whether the ground you stand on is even or bumpy, all of this data is transmitted from your nerve endings to your brain via the analog phone line in your spine.  

For most of you this phone line is in fantastic shape, it's well-insulated from weather and movement and provides excellent signal clarity, so that at all times your brain is self-aware of every necessary inch of you.  When you become imbalanced, your phone line allows for instantaneous communication from the brain to your limbs, and your arms and legs move almost immediately to correct your spatial positioning and prevent you from falling.  You can walk for miles, without ever worrying about a dropped call sending you sprawling face-first on the sidewalk.  And if you become too warm while you walk, your internal air conditioning system will automatically turn on, because your flawless phone line allows communication directly from your skin to your thermostat, which tells you to sweat. You could stand for hours, and your feet would shuffle around to keep you comfortable, your back would request an occasional stretch and change in position, but you could go right on standing all the while.  

The difference between most of you and me is that my phone line is damaged.  In some places the copper wiring is exposed, and the signal strength is not 100% reliable.  So I get dropped calls, in other words, my legs sometimes buckle, and my thermostat can't always talk to the rest of my body. If I stand up too quickly, triggering a little chiropractic-style "pop" in my lower back, I get a dropped call. If my kneecap pops while I'm walking, or my ankle or hip, I get a dropped call. I can only stand for a few minutes at a time, before my leg muscles get fatigued and start thinking about dropping my call. If I close my eyes or try to look around too much, such as trying to maintain eye contact with someone I'm talking to while walking or standing, I often lose my balance and risk having a dropped call. If I get too hot, my thermostat can't get in touch with my air conditioner, so I don't start sweating in time to maintain a comfortable, safe internal temperature. If I get too cold, which happens when it's only as cool as 50-60 degrees Fahrenheit, the signal from my feet to my brain is not strong enough to convince my brain that my feet are still there, and my brain will shut down circulation to my lower legs as if I were in desperate, freezing conditions, sacrificing my feet and toes to hypothermia if I don't take steps to artificially warm them.

I take a lot of precautions to prevent dropped calls.  Because when your phone line is as damaged and exposed as mine, the potential injury from a fall could be catastrophic. If I actually fell down, the impact could grab everything I've worked so hard to regain and take it all away again.  So I don't take big risks. I don't try to walk all the way in to a fast-food restaurant from the car, stand in line to place my order, and then walk all the way to a table to sit down.  I park up front in the handicap spot and bring my wheelchair in with me, saving my energy in case I need to do something really difficult and energy-consuming, like make a trip to the public restroom.  

So when you see me driving or taking a few steps to get in and out of my car, and you're left wondering why I deserve to carry a disability placard and park up front, just ask.  Stop glaring at me like you think I'm scamming the system somehow, or that I'm only sitting in a wheelchair because I'm fat and lazy.  JUST ASK.  I'll be happy to tell you all about it.

Not Alone

If I haven't already told you about seeking out social network connections to learn about and cope with your disability and/or serious illness, I need to do it now.  Going through a traumatic medical ordeal can be isolating and overwhelming, but finding a community of others surviving similar circumstances can bring hope, comfort, and even vital information that could help your own healthcare team.  

One especially isolating factor for me has been the sheer rarity of this particular type of cancer.  At less than 1% of all cancer diagnoses, it's easy to feel like there's no one out there who even knows enough about it to give you a fighting chance.  Fortunately, there is a Facebook group for patients and family members with Epithelioid Hemangioendothelioma, and if there's one for such a rare disease as this, there's probably a group or many groups for you, too.  

The group has been absolutely invaluable to so many of its members.  In that community we finally find people sharing similar experiences, fears, and treatments to us.  Perhaps most importantly, in that community we are finally able to compile real data from actual EHE patients to help inexperienced patients and their sometimes equally inexperienced oncologists develop a treatment plan with the best possible chances of success, and actively help researchers who are trying to understand the underlying cause and many different ways this disease presents.

If you have been diagnosed with a serious medical condition, are injured and/or disabled, I strongly encourage you to seek out your own group of similar individuals for support.  You must always be mindful, however.  Be careful to protect your most personal and confidential data, remember that no matter how similar, no two medical situations are ever exactly the same, and don't allow yourself to be completely overwhelmed in the deluge of information you will receive from other patients and supporters.  Read with skepticism and critical thinking, and above all use the information to create meaningful and thorough dialog with your healthcare team - no amount of accurate anecdotal evidence from others can replace the importance of clear, detailed communication with your own doctors.  

Used properly, a patient community can be a precious resource for treatment ideas, understanding, empathy, ties to financial and transportation assistance, and to finally not feel so alone in what you're going through.  I hope you seek that camaraderie in your preferred social venues, be they online, faith-based, etc.

You can find the EHE group at https://www.facebook.com/groups/EHEcancer/

Signs

My husband and I have long joked that I need to wear a sign like the one in the movie 28 Days, "Confront me if I do not ask for help."  It's an acknowledgement of my stubborn ways and the fact that I sometimes make things harder for myself by being too intent on doing something on my own without help.  

Lately I'm becoming aware of another warning I might need to wear, similar to the defiant threat from the babysitter in Adventures in Babysitting:  "Don't f*** with the babysitter."  Don't mess with me. I do not play around, I mean serious business and I generally do not consider losing an option. 

Forget about all the struggle of the past four years to diagnose, treat, and overcome medical problems of life-changing proportions; this was a character trait from the very beginning I think.  I've never dealt well with being told something was impossible or too hard or not for girls or any other artificial limitations.  I'm the little girl who jumped off 5ft boulders and flapped her arms trying to fly, almost every day. For years. (R. Kelly had nothing on the amount of belief in me.)  

This tenacity has manifested in a variety of ways in my working and private life.  For example, I'm terrific at finding things.  All sorts of lost things.  "The such-and-such file folder is missing; no one can find it."  Oh yes I can. Watch me.  I have a fairly good eye for detail and an uncanny ability to remember where I've last seen something, be it a physical or a digital file.

Sometimes it manifests in direct conflicts with people.  When confronted with the shocking financial betrayal of a colleague, for example, I relentlessly directed my finding skills at tracking down every possible byte of data that could assist in bringing the perpetrator to justice.  (You do NOT want to give me a reason to internet stalk you.)  When my eventual husband's ex-girlfriend attempted to wheedle her way back into his life with emotionally abusive ploys like how depressed she was now that he had moved on to long-distance dating me, I didn't waste much time on useless sympathy.  I attempted to treat her in a cordial and friendly manner, but when she declared that her life was meaningless and included key phrases about being home alone and having available methods to harm herself, you bet your life I did what any trained peer counselor would do: despite being states away, I called her local police to respond to her potential suicide attempt.

So when a local healthcare provider who has never treated me left one practice to start another, and took the entire patient contact database from one site to the next, then used it in a reprehensible email spam campaign to recruit patients for experimental weight loss procedures, I was certainly annoyed by this rather unethical use of my patient data.  I could've just deleted the spam, I suppose, but that's just not my style.  I contacted the new office to determine how they got my data, and when I heard about how he took it from one practice to the next, even patients he'd never seen, I went ahead and contacted his former practice to make them aware of the extent of his data transfer and the nature in which he was employing it currently.  They were shocked to hear of his activities and very glad to be made aware of it.  But even if they hadn't been interested in the breach, my proverbial horns were sharp and ready to address the offending party myself if needed.

If you don't want to dance with the bull, don't wear red to the arena.

MRIday

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!

Failing

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.

Hearth

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.

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.

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.

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.

Marathon

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.