No Man is An Island

But as it turns out, a man who brings an island was just what this woman needed.  

Mobility issues in the micro-environment of the home can really push you to craft creative solutions.  In my household, because of the effects of pain levels and exhaustion on my ability to get around safely, we tend to think of my mobility as an energy resource bar.  The bar starts out mostly full in the morning, and decreases throughout the day depending on the duration and type of my activities.  So we try to conserve energy as much as possible.  If I want to be able to cook dinner in the kitchen at 5pm, I can't be spending the whole day sitting upright in the rocking chair or doing a lot of walking trips, because those tasks cause pain and muscle exertion that drain my energy bar faster.  When the bar gets to zero, I have to take pain medicine and rest my legs and back by laying down.

To combat wasted energy trips retrieving items that I constantly or frequently need to have nearby, we've taken to accumulating a lot of my stuff on the chair I keep next to my bed.  It started out as a balance guide because I couldn't stand up and finish dressing (pulling up pants, fastening them, etc) without grabbing onto something like the nice, tall back of a chair.  It also provides a place for me to lean forward slightly and rest my head on my forearm when my vasovagal syncope threatens to endanger my toiletting routine.  As I progressed with therapy, it became less and less necessary as a balance aid, but was a convenient place to fold a few clothing items so I could dress myself without asking anyone to bring me garments.  

And so it has grown, over time, collecting this or that which I found I needed and didn't want to ask for help with or spend energy fetching.  But a chair full of stuff is heavy and awkward to move, so whenever I needed to get past the chair to travel to the front door, I either had to carefully inch it away from my bed closer to the kitchen wall and squeeze by it, or walk all the way around through the living room, dining room, and kitchen to reach the front entry.  This was not only difficult for me, but even difficult for able-bodied persons to work around.

This not-very-precisely scaled floor plan

shows the mobility challenges 

of the first floor of our house.

Sometimes, you have to think outside the box to find the solution to your problems, and that means seeing ordinary things in extraordinary ways, in uses for which they were not originally designed.  While shopping at our local Costco this weekend, something caught my husband's eye and he immediately saw it as the elegant solution to our problem, despite this having nothing to do with the item's advertised purpose.  He spotted a portable kitchen island, and in under an hour after he opened the box, it had been assembled and stocked to become the perfect bedside resource cart.  

 You never want to be more than a couple steps away from your favorite tie-dye shirt.

It has shelves that hold my folded clothing and purses, a basket rack that keeps all my medications, contact lens supplies, medical testing kits, lotions, perfumes, deodorant, hair care, therapy weights and stretch bands, and is topped with a solid wood counter surface.  The wheels move easily on the carpet, and the counter is still high enough for me to pull it close to my commode and gently lean on it if necessary.  However, if I feel a full faint coming on, I will lean sideways onto the bed, so that I don't pass out on the island counter and potentially injure myself when the wheels allow it to roll away from me.  For me, vasovagal syncope has very clear warning signs that should give me plenty of time to make that adjustment, as I've had the problem long enough to be very familiar with the signals.

Once again, creativity and repurposing solved a messy, irritating mobility problem in a neat, organized, and extremely satisfying way.  If you find yourself not as able as you once were, looking around your houseful of challenges and feeling a little lost in them, remember to step back and re-imagine what you have to work with.  When you view your surroundings in a new way, hopefully you, too, will find your own quirky solutions perfectly adapted to your needs.

When Reinventing the Wheel is a Good Thing

The Israeli company SoftWheel has given a fresh design makeover to the age-old human mobility innovation: the wheel.  In what I would call an elegantly simple solution to an ancient, common problem, they have created an inner spoke suspension system for wheelchair tires, and in 2015 they will also be rolling out a similar design for bike tires.  The shock-absorbing system allows the wheelchair user (and later on, cyclists) considerably greater comfort and mobility in navigating stairs and curbs without ramps.

  


For someone with a spine like mine, there may never be a day when I can use technology like this to wheel myself down stairs or unramped curbs, but it will definitely increase the mobility of wheelchair users who do not have delicate spine issues.  And until architects get over their obsession with brick and cobblestone sidewalks, this design might allow a little bit more comfort in shopping centers and other public venues.  

In fact, SoftWheel's inventor was inspired to solve this problem when an injury forced him into a chair for several weeks and he discovered how agonizing it was to roll over the grooved stone paving slabs commonly used in sidewalks where he lives.   Such textured paving methods are apparently all the rage with the engineers of public spaces all over the world, and while I would love to see a complete paradigm shift in the architecture that itself is the problem, innovation like this is certainly a good interim step.  It's very encouraging to see great thinkers start turning their attentions to mobility issues of any kind.  

Hungry for Appreciation

I love cooking.  Always have.  But it's not easy for me to do anymore, and probably never will be as easy as it used to be.  Lately I've been trying to do more home cooking anyway, because it's much more cost-effective and healthier for my family.  My husband and I have a pretty well-organized dance for getting my food prep needs set up and making my cooking procedures as painless and simple as possible.  Even with all that readiness, it still takes an hour or more of serious physical effort for me to make a meal though.

So you can imagine how I felt after that effort, trying to sit down and enjoy my food, with a non-stop stream of complaints flowing from the sweet mouths of my three babes.  They didn't like the way the sauce was mixed with the pasta.  They didn't like the sausage to be in the pasta, either.  Didn't I know they don't like onions and sweet peppers?  I sat there and listened to one thing after another, the three of them taking turns at it, until I snapped.  I ordered them all to be silent for the rest of the meal, and reiterated that they would eat every bite of the reasonable amounts we had served them.  

For the rest of the meal I stewed over it.  They were so ungrateful for what we have.  Of course I felt unappreciated and annoyed by their lack of respect to me and the effort I put into cooking.  But I wanted them to learn something bigger, something more important than just being thankful to Mom for taking the time to prepare something better than fast food.  That's when I had the idea about the report.

I assigned my kids to do a report on childhood and world hunger.  It started the next night.  In every step of the process I tried to incorporate skills they practice in school, and always their work on the project waited until after their regular homework was done.  I printed off fact sheets I found online, and had them use their highlighters to find the essential information.  Then the three of them chose what they thought were the 10 most important facts. 

The next night, my oldest combined the 10 facts into a written report, which I said had to be at least 20 sentences long.  Tonight, he presented his report to the family, and his younger sisters were charged with the task of writing down 5 things they learned.  Here, using their nicknames to preserve their privacy, are the results of their efforts.  I've transcribed it just the way they wrote it, imperfect and wonderful. 

Bandit learned:  Being malnourished is bad for you.  870 million are chronically hungry.  11 million kids get free or reduced price breakfast.  In the US, 16 million go hungry.  5 million kids die because of hunger.

Little Bit learned:  5 million people die because of the effects of hunger.  Some people get free lunch to help fight hunger.  Hunger causes sadness, anger, and trouble learning.  The world already makes enough food for everyone.   People go hungry because they can't afford to buy food or they can't grow it.

And big brother Bubby with their source material:  

World Hunger

This is about world hunger.  In this report there are 10 facts.  Please take it serously. Going hungry is the cause of mallnutrithshon and other health problems.  Effects of mallnutrition can be fatel, 5 millon kids die because of the effects.  870 millon people are cronicly hungry.  Cronicly hungry means the almost never eat [enough food].  It the US 16 millon kids go hungry.  Kids who ar mallnurished are likle [likely] to be sad, angry, have truble making friend and learning will be hard.  11 millon kids get free or reduced price school breakfast, 21 millon kids get free or reduced price lunch and 3 millon get free food in the summer too.  85% of low income famlies wish they could make health meals but only 50% do, do to the fact healthy food is expencive.  The world produces enough food for everyone but the main problem is people are too poor or their land is to small to grow food.  Now you know how bad world hunger really is.

I couldn't be more pleased with the lessons our family learned this week.  I even forgave that it wasn't actually 20 sentences.  I think all of us are a lot more appreciative for the plentiful food we have, and the simple joy of sharing our good food together as a family.

And as a bonus, tonight I spent an hour preparing boneless skinless chicken thighs, with stuffing and peas.  My wonderful children were generous with praise, they even said it was the BEST. CHICKEN. EVER.  I totally agree.  With everything that this disease has tried to take from us, every meal we share together is the best ever.

Ain't No Mountain

Today, for the first time after two years of not being capable, hubby and I shared our anniversary date at our local fondue house.  We used to always have our anniversary dates there, but with the restaurant being located in a basement and all the physical challenges of the past few years, we just didn't get there.  We have been married 12 years tomorrow, and this is also the anniversary of the month I began to stand without help and took my first steps.  Today we overcame a hurdle that felt like it represented everything we've faced in our marriage so far, and emerged strong, united, and unstoppable on the other side.  Appropriately, it was a mobility hurdle.

It took us close to twenty minutes to find handicap accessible parking within a reasonable manual-chair-pushing range of our reservation, and when we found it, it was right on the street and required either stepping up onto the curb or wheeling down to the corner of the block to use the intersection curb ramps.  If we had owned an adapted vehicle, we could have extended a ramp from inside the car to the curb to avoid that issue.  This was followed by a two-block journey over every wheelchair warrior's favorite uneven pavement surface: bricks.  When we reached the restaurant, they were having some difficulties with their chair lift.  It got us down to the seating area, but it appeared to be incapable of making the return trip after our meal.  

The apologetic staff offered to let us exit through their back door, which would have put us even further from where we parked, but I had a different idea in mind.  I counted roughly twenty stairs up to the street level.  They were too wide to use the arm rails on both sides, but had a nice gentle rise of only about five or six inches.  I told my husband I'd like to give it a try, that I thought I could do it, so my muscle-bound hero folded up my manual chair and carried it up the stairs, while I went to the right-hand railing.  A kind staff member stayed just next to my left side to offer support if needed, and I began my climb.  I knew as soon as I'd passed the first two stairs that I was going to make it all the way to the top.  The last few steps were noticeably tougher than the first half had been, but overall it was not the Mt. Everest-style experience that stair climbing has typically been for me the past couple years.  The staff applauded when we reached the top, and my husband and I cheered and high-fived ourselves.  

Back home, resting in my hospital bed, new possibilities dance before my sleepy eyes.  I don't know how often I can pull off a stunt like what we did today, but I suspect it is more often than what I was previously giving my legs credit for.  I'm rather looking forward to finding out.  That reminds me, it's been a long time since I did a real distance-push walk, where we keep track of how far I can go and really strive to reach the limit of my legs' endurance.  Perhaps it's time to do that again.

Accessibility Woes

Last night, in a fit of wild hopefulness, I decided to take a quick peek at the local real estate market to get an idea of how many ranch floorplans are for sale, and what their prices are lately.  We're not actually ready to start seriously shopping for a new home yet, there's still things that have to be done to ours and strategy that has to be planned with our realtor before we re-list our townhome for sale, but I wanted to just give myself an exciting little taste of what's available.

What I got instead was a bad taste in my mouth.  First of all, unlike when we were searching for homes in 2012 and 2013, I couldn't find any real estate website that would effectively and accurately let me limit my search to only ranch-style, single-story homes, so I had to sift through lots of results that were completely impossible for me to live in.  Secondly, from what I could identify in the search results, there are even fewer single-story homes available than we had to choose from previously.  Accessibility has never been a great priority of builders, this isn't exactly news to me, but I find it increasingly frustrating that there are so few homes available to match my dream of having everything I need on the ground floor with me.

If money were no object, I would just buy a plot of vacant land and hire an architect to design the perfect accessible house with the 4 bedrooms we need so that someday our twins can stop sharing a room, with a basement for tornado warnings but laundry on the main floor.  It would have plenty of kitchen cabinet space and a master bathroom with a tub I can put a shower chair in, plus grab bars.  There would be at least one full garage spot, where we would park the wheelchair accessible vehicle of my dreams, and we would all live happily ever after.

But of course, for anyone with disabilities, money is usually quite an object.  I'm scared to even find out what it would cost to actually hire an architect, much less proceed from there to actual construction.  We don't have the knack for winning lottery jackpots, apparently, and short of that I don't see any custom building in our future.  Maybe someday more housing developments will consider the needs of people with disabilities.  I used to work in the construction industry and I know that the ADA has (forcefully) helped bring about more accessibility awareness and availability in multi-family homes and apartment/condo construction, but I've yet to really see it be a consideration in single-family developments.  We've been a marginalized group that architects have groaned about accommodating for too long, and from the teeth-rattling cobblestone/brick sidewalks in shopping centers to the universally inaccessible obsession with 1.5 story, 2 story, and various split-level home styles, modern construction needs a complete overhaul that embraces and celebrates the United States' largest minority group:  persons with disabilities.

This is not a beautiful sidewalk. 

It is the most painful kind of sidewalk 

I've ever wheeled over.