Posts Tagged ‘ walking assistance ’

Also Day

“The hell I’m just going to go chop that onion” she stated sternly. My wife stood over my body where It had landed.

It was the first big fall of the last several months. My left leg stopped working while in hallway-practice with my walker. I tried to take a step then ricocheted from one side of the hall to the other, slid hard onto my rib cage.

It could have been worse (always could’ve). In the second before I hit the ground, I immediately pushed the walker away to avoid it and did whatever I could to protect the head. This system has helped me get around worse.

I shouldn’t have said that out loud because that may negate it all.

I am so grateful for my wife. Without her I’d have just dragged myself back to the bedroom and waited to get back up. I mean the tv was on auto play so it was bound to end successfully with both entertainment and a clamber back into bed.

I proposed this but was shot down. She pulled up the chair. I tried to sit up and get my shins flat on the floor for a few minutes. She assisted me trying to stand (& failing) and get seated. Though I wouldn’t have been able to get off the floor without help, because it’s an incredibly stressful situation she was just as fallen.

We both went to bed early last night. Today she helped me make a pot of soup, swept up all the frozen vegetables I dropped.

Points for peas and carrots.

Then she took both dogs for shots. Then she went back out to the store.

I am so lucky and so in love.

Also, how did I make it to forty without ever having a cheese puff? Because that too.

Walking the Walk

fern (1)Adaptive Yoga class ended again in tears — they are not sad tears, per se, and there’s become a normalcy associated with them because when 20lbs of sand are sat on my tied thighs I will, for the first time since the week prior’s class, feel the ground.

Damn, that’s a pretty simple thing we all take for granted. A year or so ago my physical therapist asked about how lack of sensation affects my relationship to different environments when I can’t feel the ground on which I walk; I shrugged with reply, “I believe the ground is there.”

Duh, right?

It’s surprisingly troublesome to believe that when you only know you’re standing because you’re in pain, or because you haven’t fallen yet.

In last week’s class, we had a different instructor and she tried something new. Laying down, my wife put her feet against mine and pedaled gently. Going in, I thought nothing of it — the class has many students in wheelchairs, and while I’ll like every movement included, this seemed more geared for those who could no longer walk. Things began here uneventfully, but in a few seconds I tried to understand the foreign feeling of walking without painlessness.

www.marriedtothesea.comThen I started bawling because I realized that the possibility exists for others to stand and walk without their wounds. What’s wonderful about this happening in a yoga class is that the tears, no matter if they are sad, are wrapped in gratitude. Ultimately painful realizations like “This is what walking felt like when I was a child. I used to not have these injuries and now I’ll never know that sensation again in waking life” end in being grateful that — hey, look over here! — I just got to experience the thing for which I started immediate mourning. I could either mourn my way through it and spend the night maudlin for its fact, or I could snap my fingers, shake myself by the shoulders and yell “DON’T MISS THIS FEELING, DUMBASS.”

So I went with the feeling — examining as it continued. The quiet blubbering continued. I was so infinitely grateful for a new perspective on walking, and how interesting a human function it is.

where-are-our-flying-carsI am grateful that I no longer hide when I injure my body (shrugging off of 4′ drops onto cobblestone because I was fat and embarrassed… ah, college!) but commit to dealing with them openly and with ownership.

I am grateful to know that I have lived before without pain, and

I am grateful to better understand that pain today.

Have you met my fashionable cane? Her name is Aubrey Kanedinsky, for artists Aubrey Beardsley and Wassily Kandinsky.

Have you met my fashionable cane? Her name is Aubrey Kanedinsky, for artists Aubrey Beardsley and Wassily Kandinsky.

I am grateful for the Adaptive Yoga class — though yoga has significantly changed my life for the better, it’s tough for me to keep up in a regular class. Every week, someone can help me do the things with which I am often otherwise ashamed to ask for help — “ask for help, just tell these strangers about your invisible disability” seems like a tiresome order for all involved, y’know? Strangers think I’m just  a regular sassy young lady with a fashionable cane.

Oh yeah, and I’m grateful to be sassy. I can give you a list of references here to easily prove that.

Even better, let’s show some love to the internet at large — I’m grateful that I can keep a blog to catalog these things (because I will forget a lot if it) and now I can dust my hands and go about daily life. Those dirty dishes will appreciate my gratitude, and tonight’s pesto will taste better if I deign to make it with love (a critical ingredient).

As an Art

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While almost a proper half lotus pose, Lemur does not mean to insinuate the tongue thing is proper yoga studio etiquette.

I fell again like a pro last night. About 1am I woke for another trip to the bathroom and bounced against the hallway walls a little more than usual; I thought only casually of that because my head was throbbing. I went into the normal post-bedtime routine to which I have trained myself:

  1. Enter bathroom: right turn.
  2. Face commode: right turn.
  3. Turn to sit on commode: 2 right turns.
  4. Sit on commode: Align Achilles tendons against the Squatty Potty and begin to assume Utkatasana (that’s Sanskrit for “chair pose,” and Sanskrit is “yoga talk”) and reach porcelain sitting safety.

video-watchIdeally I would stop after steps 1-3 to reorient myself before turning again, but desire to get back under the covers before I become completely cognizant and awake often keeps me from adhering to that little golden rule. This time it was during step 3 that I began to lose dominion. In that brief trice between “realizing you’re falling” and “hitting the ground,” yoga saved the day. Well knowing both that to do a proper Utkatasana one must pull their hips back, and that if I didn’t change my current trajectory it would be a much more injurious affair, I was able to twist my hips and pull them back quickly enough to end up roughly seated. I fell like a queen to her throne, yo!

Do I seem a bit too excited about losing, then consciously regaining control over a body that excels at taking it away? It’s all the toilet talk, isn’t it?

I’ve got more than plumbing plunges under my belt, and they live the expanse between “Even understanding that a fall just happened” and “Getting up and walking away quickly out of embarrassment until anyone who might’ve seen it can no longer see me” to “Making comedy out of tragedy” to “Turning tragedy into scholarship.”

Don’t get me wrong, I do mean to brag — I’ve gotten very good at falling.

  •     That time I fell down the stairs and grabbed the banister to still hit the landing on my feet.
  •     That time I was able to twist my fall so as to hold one hot, heavy bowl of Indian food stable while simultaneously dropping the other without spilling into a basket of laundry.
  •     That time I fell down the stairs and ruptured my Achilles tendon two nights before flying to NYC and walking the town with my brand new wife.
  •     That time I never stopped waving “hello” as I went down.

    There’s a time and a place for everything and it’s called “college.”

  •     That time I plunged spread-eagle and ended facing an inexplicable direction during the lunch rush of a cafe I worked at and the whole restaurant got quiet.
  •     That time my ex saw me fall in the street and instead of helping me back up, walked away laughing.
  •     That time I fell flat-backwards off a 4′ concrete pillar onto cobblestones.
  •     That time the stairs beside said pillar were iced over and I flew in the air just to have all 300lbs of me land directly on their jutting edges.

Those stories and more should earn me professorship at the school of hard knocks. I can’t not laugh at myself when it happens in public now — even if it hurt, a chuckle takes any maudlin out of the situation for both myself and innocent onlookers. Last night’s fall was a success, not just a misfiring of neurons –even alone I can cachinnate, but this time in victory instead of discomfiture.

Falls — Noun and Verb

Issaqueena Falls

Issaqueena Falls

An uninjurious fall or two was a pittance of payment for a visit to [a small number of] the waterfalls of Oconee County. The park at Chau Ram was the first stop, but was gated until (as was posted) March 2014. Curses! The first falls to which we in earnest arrived just happened to coincide with my daily “spell.” They also happened to be the most treacherous (three words: “wet rocky precipice”) of stops my wife had lovingly researched the difficulty of. Had I not been in a state this wouldn’t have been a hard piece of nature to traverse — I grew up on a crik (“creek”), and spent a childhood learning the careful methodology of treading river river rocks.*

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[insert Blair Witch Project acid trip]

The Brasstown Falls, however, were a sudden stranger — autumn leaves plastered the small canyon and flickered around me like a Blair Witch Project acid trip. Hell, even Cowboy was scared of this one, and Cat thankfully took hold of both dogs while I focused on safe navigation with cane. There was a tiny spill over some larger precipice rocks, then one more full-body sudden descent into a soft, mud-n-moss capped hillside. I engineered that one like a pro. My Physical Therapists would have been proud of the implementation of their teaching; on the trek back I kept my gaze focused on the path before me (neck/body movements exacerbate symptoms), engaged my abdominals for stability and counted each footstep as though I were in one of their obstacle courses.

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spot the beaver dam

The next falls were easy-as-pie to reach, and stunning. The last ones we hit before dark actually never got found, but the walking was intense through, around, and under trees downed, tiny and low. It was an ambitious endeavor, but I felt more victorious than pained when I emerged without falling once on this trail.

I was glad for the overcast of tired rainclouds and forest canopy. Glad, too, for long stretches of time sitting in the same position while driving, for small town diners and gorgeous independent bookstores. Our dogs were thrilled with the entire day (in addition to hundreds of new odors to discover, they each got half a sausage biscuit and some boiled peanuts… it was their Daycation too).

that smile is my heart

that smile is my heart

What I come away most grateful with is knowing that, even when she gets a wild nature hair up her bum, my wife plans for the accommodations I need and keeps an eye on the terrain for me when I can’t control the movements of my own. She drew up the routes to all of these very-backwoods locations and did all of the driving… after making sure the kitchen trash was empty, my coffee pot was clean, the dogs were fed and other various preparatory tasks.

*… And also that most of the shark teeth and vertebrae excavated there came from the Oligocene epoch. The one bone fragment I treasured most I thought, as an amateur paleontologist, was perhaps an even more prizable fossil from the Plesiosauria family. Adult hindsight suggests it was a deer tooth from neighboring hunters.

Some Motivation Required

some_motivation_required_exercise-300x225My wife volunteers weekly at an adaptive yoga class here in town. It’s the first I know of around here that’s geared towards people with physical disabilities that limit their movement. Because I have heard so often from people what a healthy-looking person I am to have MS, I didn’t really consider myself in the same need of adaptive yoga as the students who entered class in wheelchairs or with paraplegia. In fact, I was the only one who showed up not in a wheelchair. Talk about feeling like the biggest walking punchline in the room; not only did I feel like the odd man out inside the studio… but walking out after class was confronted in the remaining daylight by how much safer and slower I did need my yoga. During the hour-long class it was made apparent just how little punchline there was, as I felt as challenged as anyone else. I left sore with a body that felt cleaner (rain notwithstanding).

medium_4584502251I left, too, with an understanding of my own limitations that had been previously been swept under the table. Maybe in conjunction with our recent transfer from up- to down- stairs bedrooms I was better able to pick up on little lies I was telling myself. It’s really been sinking in slowly that my ability to walk should not be taken for granted. Yes, I’m young — only in my early thirties; alas, my condition, in relation to this, is not. My pelvis continues to be wracked by the same pain during the night as it did when I was 13. I had MS for more than half my life before it was diagnosed a few years ago. My “normals” aren’t completely new — in the way a frog can be boiled without knowing, I have adapted as bridges present themselves for crossing. So now there’s a cane involved, whatever, I’m still not being boiled… right?

Wait, which metaphor am I using again?

Point is, I think, that I’m scared that RRMS is over and SPMS has started. I don’t feel as much remitting after a relapse… in fact, I am uncertain if I’m not having an exacerbation right now (increases in bladder and spasticity problems) and I’m scared that the Gilenya isn’t working.

419140_470645949683011_886272741_nFeeling that little gut-punch of believing the worst of yourself is something I’m training as a red flag. I am no stranger to anxiety and I am tired of it taking over — when fear starts, it is time for a GRATITUDE ADJUSTMENT:

  • I am grateful for adaptive yoga for people with physical disabilities.
  • I am grateful to do something good for my body that doesn’t cost a worse price.
  • I am grateful that there are groceries in the kitchen.
  • I am grateful for all of my Rx medications.
  • I am grateful for a fun morning out with Mom this week.
  • I am grateful that Cowboy got to see his ridic-beloved Grandma.
  • I am grateful for Facebook photos of my nieces.
  • I am grateful for my amazing wife; truly, I mean this every time I write it even more than the last time.
  • I am grateful for a SSDI court date!
  • I am grateful for silver linings that open up the end of a tunnel.
  • I am grateful for you. Thank you.

Birthday Park-turision

congaree-(1)

It looks like this in the day…

It was alternating between dribble and downpour last night as we walked into the most lightless place in the state. The boardwalk was slick, but it had railings and I had a cane; I also had the ready, steady arm of the most beautiful woman in the world on her birthday. Really, the entire day had been more a gift for me than it had been for her — and while I in full honesty know she’d argue that point, I stand by my assessment.

At the Congaree National Forest we launched her final birthday endeavor. To be attended was one of the final nights of an annual firefly synchronization, and from last year’s experience rain did not dampen the spirits of these tiny little sparks. We had one poncho, umbrella and flashlight covered in red saran wrap; at about 9:30 we headed into wilderness complete save the slick, crooked boardwalk. It wasn’t a night to make the entire 2.4 mile boardwalk — safety conditions of sopping tenebrosity aside, there was the previous night’s inexplicable foot injury swollen to haughty, but not inoperable, levels. On her birthday she took the environment with caution, gasping louder than I did when the cane or a foot slipped; on her birthday she leaned in over a black, rain-soaked ear and whispered, “I love you so much.”

...and about like this at night.

…and about like this at night.

After a very little while it became clear that we were the only other living things watching what, to the fireflies, was probably a raucous good time akin to your typical college spring break. It was exciting to find ourselves so utterly alone in an opaque 26,546-acre wood, receiving from nature both burlesque and lavement. I could imagine her face dotted with clear beads of water reflecting the light of a smile I knew to be there.

There are plenty of things today that I could list on either side of a coin — none are things for which right now I am more grateful than the amazing woman who took my life from storm drain to, well, a 26,546-acre wood. Happy birthday my luckiest of all charms.

 

Take a Deep Breath

Nothing, not even securing a lawyer for it, keeps you from the mountains of paperwork SSDI requires. I’m into my third year of waiting, now for the final “go before a judge” part of the appeals process. All of my personal information belongs to others but today I am filling out paperwork easy enough for a paralegal to handle. Not that I get salary pay for this day of work, nor even a guarantee of being considered “disabled” by the state.

watch-for-ice-polarbear

7 more pages are scanned and ready to mail. I don’t need to worry about getting this done because, well, now it is. I can redirect the stress of this back to being stress about bills and the flat tire we got yesterday; turns out I don’t really have the energy for even that, so

  • a silver lining?

Despite… of perhaps because of the both literal and figurative storm clouds, there are plenty of silver linings worth identifying:

  • My parents were able to help us out with money and groceries this week
  • I therefore have not had to cook,
  • But I am marinating a nice pork roast tomorrow!
  • I have finished these damn forms.
  • The lawn was mowed today
  • Sadie (one of our dogs) has recovered from a gnarly lip infection
  • Walking with a cane is so much more helpful than it is a blight on my pride
  • Coffee/tea pots set up for the morning
  • Dishes washed
  • Showered and in pajamas

So there, mountain of paperwork. I’ve got more today for which to be grateful than you’ve got number of pages!

No hipster fun here!

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Stairs ARE kind of a horrible bitch in the dark, amirite?

I am going to bring this one for the youth-cane market.

Really, this is the cane I just ordered off Amazon.

I really went ahead and decided on my own to purchase an assistive device.

This is a little sore to the pride since I was able to give up the forearm crutch a couple of years ago after good chiropractic care, dietary changes and weight loss changed the picture. The picture changed enough that I firmly believed I was moving a little bit backwards in my disease progression. On my last visit to the Neurologist, my nurse (she’s the best) asked me where my crutch was. “In the car,” I replied with a shrug that gifted me the knowing glance I see from those who know me better than I know myself.

So I thumbed through internet pages of options. Adjustable? Absolutely… I’m new to canes, and the height is sure to be one of my fussy points of contention. A comfortable handle — no old fashioned walking sticks for ironic hipster fun. It needed to be a solid color that went with everything… black usually fits the bill right away, but it’s almost summer and black might clash with my wardrobe. Ok, but remember that poor night vision thing? Boom. A black cane with a clear bottom half that lights up when you need light. I already have dreams of changing the light bulb color.

Giving it a go. Right after I Google “How to properly walk with a cane” so I don’t end up being naturally festive with it.

MS is fatal, isn’t it?

65604_551557131563260_672011386_nThanks to the UK’s MS Society for ads like this. There are so many very basic MS questions that we all will be asked, and so little in the way of basic answers that can be returned. “How are you today?” is a loaded question that has taken many of my adult years to understand how to reply. Well how to reply without making people very uncomfortable, that is.

I have been living with Multiple Sclerosis for approximately twenty years. This astonishes many people who’ve known me since before high school, and I often see the same (in a generalized nutshell) reactionary procession on a face I’ve just shared my Dx with: surprise, then processing — remembering that time I [fell, dropped a glass, tripped, used the wrong word, aspirated and drooled on their floor], blaming themselves a little for not having been the one to call my health out on it then asking the first question that comes to mind in order to fill the brief pause they’ve unintentionally allowed. I’ve been the same way for most of my own life when faced with unsavory information that validates my fears about the validity of human existence… I’m guessing most people are taken aback at least a little when such fatalistic gems are offered by people they care about.

B001BFRPVU-4But facts are saviors, not sins. In the two decades during which I was still growing, MS became my “normal” before I ever knew something was “wrong with me.” I have to use a lot of quotation marks here as our culture no longer adequately covers certain ideas with a dictionary. When I talk about living in a “state fair funhouse nightmare,” I am using words that will convey the way I feel much of the time. “Dizzy” doesn’t cover it — the entire world often exists to me at an 87° angle, my vision comes in and out of [focus, double, depth perception]. I understand my world to be at varying stages of a very long hall of mirrors. It has been like this since a 2003 exacerbation, and I am begrudgingly used to it. Could I live any other way but to be?

Turns out that I have unwittingly become very good at falling. This is not a talent, per se — at least, not one you would have really ever given much thought to. It’s no playing the piano (I cannot play the piano). I’ve got about 10-12 good “can you beLIEVE I didn’t get more hurt than that!?” fall stories which could be the fodder for a very nice short story anthology. watch-for-ice-polarbearI have fallen backwards off of a 5′ high wall onto a brick landing. I have fallen down many staircases and used banisters Cirque du Soleil-style for prevention. I once saved 2lbs of Indian food from spilling during a fall by directing my fall into a roll so I could safely drop the bowls into a basket of clean laundry (where they were cushioned from toppling) before hitting the ground on a well-padded haunch. That padding has helped more in the past than it does now — when I fell off that wall in college I was still at 300+lbs (what a sight it must’ve been!).

But I am more than crashing well into the ground. I am more than my ability to type, but not always to read. I am more than the fatigue that keeps me seated for longer in a day than I’d like. It sure doesn’t always feel like I am, but I can remind myself in places like an internet blog so that I can check in on this self when the more dour self appears.

I have spent my life learning, and re-learning how to live in the pale machine I was born into; it has taken different courses, but who among us has a life that hasn’t veered? How long have you been living with MS, and what are your best ways of coping with your worst moments?