Not a Walk in the Park

A mundane event occurred this past weekend during a family gathering, yet it left me pondering several questions that don’t seem so run of the mill.

On a pleasant spring day, my cousins and their children strolled to the neighborhood park.  I love nice weather, parks, playing with kids, and I had nothing else to do aside from rest on the couch while intermittently checking my email on a smart phone with suboptimal 3G.  I wanted to join the park group, especially because these family members live across the country and seeing them is a special treat, but I immediately thought, ‘it’s not an option.’  Already in pain from flying, I knew my foot would give out at the park, if not sooner.

But I’ve gone ahead and done things — shopping, navigating airports, traveling — that seemed physically infeasible.  Sitting on the couch aimlessly scrolling through my Newsfeed, I realized the reasons why I had been quick to dismiss participating in the excursion:  the only way I could comfortably join in was to use my wheelchair.  While I was fortunate to have a devoted family member who would have been happy to push me, I was afraid of two things.

  • Alarming my 2.5-year-old cousin by being in a wheelchair.  Had she seen one?  Would it upset her?  She’s not quite old enough to understand, and I didn’t want to upset a cheerful trip to the park with an awkward, toddler-friendly description of disability (which surely does not exist).
  • Attracting attention from the newer family members on the walk, who either didn’t know about my accident and subsequent disability, or didn’t realize that the accident led to a permanent condition.

Was it a huge deal to miss out on a trip to the park?  Of course not.  (And I even learned some interesting things on Facebook about my friend’s sister’s ex-boyfriend…and realized that Pitbull must work “dale” into every status update).

But all of the times I miss out on excursions like these accumulate.

It would be nice to just walk to the park without thinking twice about it.  Or to use my wheelchair to get to the park without caring about other people’s judgments.  Through continuous medical appointments and efforts such as this blog, I shoot for the former.  But in the meantime, and perhaps for a lifetime, I need to figure out how to deal with the latter.

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Scan This

MRI.  CT.  PET.  (X-ray).

Medical imaging has changed the face of medicine and undoubtedly helped numerous patients and physicians.

Have we found the magic bullet for seeing inside our web of bones, muscles, tendons, ligaments, and cartilage?  The answer depends on what you’re trying to find in these scans.

My personal experience and the complaints of several orthopedists lead me to believe that in ortholand, these scans are ‘ok’ at best.  At least when it comes to feet, deciphering an MRI is more like understanding one of Monet’s later paintings than a Dorothea Lange photograph.  My physicians have explicitly and implicitly revealed the murkiness of MRIs.

  • Explicit:  “These f’ing MRIs are useless.  If only the technicians running them knew what they were doing, maybe they could get a decent picture.  But I don’t know how much that would help because the process itself…leaves room for improvement.” [expletives omitted]
  • Implicit:  The same doctor looks at the same MRI three months apart and reads them differently, leading to different diagnoses and therefore prognoses.  Six doctors read the same MRI and each gives his own diagnosis.  One sees an extra body part that the other five do not see.  He wants to put me under the table to remove it.

 

After having numerous (8?) MRIs, I’m looking into getting a CT scan to see if there is bone damage or something sneaky on my talus that is not showing up in MRIs and x-rays.

Let’s let the CT out of the bag.

An MRI of the Ankle

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Whether Weather Matters

We’ve all heard people claim that they can predict the weather based on the ache in their joints.

I’ve joined the ranks of people with personal barometers.  When there’s a low-pressure system setting in — rain, clouds, fog, dampness — my ankle starts to give me extra trouble.  You would think that after several years of this pattern, I would realize that when my ankle is extra painful for no apparent reason (I haven’t walked much, stood much, etc.), it’s the weather.

But is it?  The ambiguity surrounding the link between weather and joint pain leaves me dubious and seeking alternative explanations for the unexpected spike in pain.

Am I, along with numerous other people, overeager to be a weatherman?  Or are we interested in finding a simple explanation for increased pain?  We cannot control the weather, so if rain and clouds are causing a storm in our joints, the only thing we can do is move to Phoenix or San Diego…not so feasible for most. Essentially, the problem is out of our hands (unless, of course, the affected joints are in the hands).

My cursory glance at the literature suggests that this topic remains hotly contested among doctors and joint-pain sufferers.

Does anyone with a strong science background want to step in and share their knowledge?  I hope to have a guest blogger discuss this topic at a more detailed level.  Please let me know if you’re interested in writing for Subtalar Superhero.

For now, I’ll keep singin’ in the rain about my ankle pain.

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I Can Has Parking?

This post is dedicated to a friend who passed away a year ago from complications due to her disability.  She demonstrated maturity and composure, with bits of humor shining through, during a long battle against bone cancer.  Always thinking of you, D.M.  ❤
Parking.  Unless we’re super fit and environmentally friendly, most people over 16 (and younger people who are subjected to the expletives that fly from their caretakers’ mouths when parking troubles ensue) find one of the greatest nuisances of daily life to be finding a spot for their car at the grocery store, a ballgame, where they work, or even in their own neighborhood.  Especially in dense urban areas, vying for a spot is a sport in and of itself.

The disabled parking space seems to be the holy grail of parking:  it is adjacent to your destination, often available (depending on where you live…), and a pretty blue color.  A black market of fake or expired disabled parking placards has emerged, and malingerers use these to nab a blue spot.

The existence of these law-breaking, morally questionable people negatively affects everyone;  more specifically, it complicates matters for people with invisible physical disabilities, who actually DO need to use disabled parking spots but do not APPEAR that they need to do so.

Acknowledging that some people have more severe mobility impairments than mine, I always try to park in a non-disabled spot if there is an accessible one, especially if there is only one left; however, if I cannot find a spot within my walking distance, or I’m having a flare up that day, I will exercise my right to park with my placard in a disabled spot.  Perhaps because I live in a city with a vocal disability rights community, I have never faced verbal questioning.

But every time I take out my blue placard, I get nervous that someone is going to think I’m using my grandmother’s placard.  I look “normal” — whatever that word means — and even young and (fairly) fit.  I often wear tennis shoes and my long pants usually cover my brace.  My gait is a bit abnormal but not to the untrained eye.  Why is someone who looks like they could be on a college sports team parking in the blue?

A  friend of mine who had a similar condition in her knee experienced verbal hostility.  One man threatened to call the police when he saw this 21-year-old emerge from her car in a disabled spot in front of Walgreen’s.  Fortunately, my friend stood up for herself, and with tremendous attitude told the man to go ahead and call the police…he’d just find that her name corresponded with the placard.

Not every person with an invisible physical disability is able to muster up as much courage as this friend did; instead, they find themselves disclosing information they wanted to keep private or saying nothing and feeling guilty for no valid reason.

  FOOT FOR THOUGHT

  • How can we resolve the disabled parking space challenge?
  • Have you, or has someone you know, been questioned about the validity of their disability?
  • If you are able-bodied or have a visible disability:  do you ever experience resentment towards people who “look fine” but park in disabled spots?
  • Since there are indeed malingerers out there, is it justifiable to feel this resentment?

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The Disabled Bathroom Dilemma

You gotta go when you gotta go.  But is it socially acceptable to use a designated disabled (more commonly referred to as “handicap(ped),” but this term is rejected by members of the disability rights movement…explanation to follow in future post) bathroom if you’re not disabled?

Have you ever emerged from a disabled stall to find a visibly disabled person looking at you questioningly?

Who may use it? When?

I have, and I can report that it was quite awkward.  I was in a long line for the ladies’ room during a show intermission and observed that everyone — visibly disabled, invisibly disabled, or nondisabled — was using the stall designated for disabled people.  When it was my turn to tinkle, this was the open stall.  I did a scan of the room to see if anyone seemed to be waiting for this stall, and coming up negative, hesitantly proceeded to use the restroom.  When I left the stall, a woman using a wheelchair was waiting right outside and seemed a bit perturbed by my emergence.  She didn’t say anything to me, but her facial expression gave off a “what the F is this [seemingly] ablebodied girl doing in this stall?” kind of attitude.

When I’m using my wheelchair, there is no viable option other than the disabled stall.  When I’m on my feet, I wait for one of the other stalls unless it’s a crowded place where everyone seems to be using the disabled stall (a la awkward situation above), my foot is aching, or I…just can’t wait.  (It happens).

What are the unwritten rules about using disabled bathrooms?  Should there be written rules?

Apparently, one of my favorite comedians has pondered these questions:

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Awk Social Situations

I’ve been receiving some questions about this afternoon’s picture post.  Friendly hint:  one fish, _____ fish…red fish, _____ fish.  Apparently this fantastic phrase can be applied to my (n0t-so?) favorite body part.

That post was a bit awkward, or “awk” (even “ox”),  as some of my peers like to say…which is perfect, because the next theme is awkward social situations.  In previous posts, I’ve implicitly mentioned several of these situations and explicitly discussed a few, including the use of a wheelchair by a person with an invisible disability — at an airport or outside of TSA-land.

Mike "The Situation" Sorrentino

 

In a sense, this theme is a bit silly (awk?) because the plentitude of ambiguous, confusing social situations floating around in our world could fill a tome the size of the U.S.  But these everyday interactions between disabled and non-disabled people (a way of indicating able-bodiedness without centering ability.  I can give you an exciting spiel if you feel so inclined; I might write a future post about disability terminology) are so frequent, and socially important, that I would like to devote the next week to reflecting on them and gathering your thoughts:  how do you react when a person using a wheelchair struggles to open a door?  In trying not to stare at people who use assistive devices (e.g., wheelchair, scooter, cane), do you find that you ignore them or initially glance at them and then cut off eye contact?

I would love for this topic to be interactive because it’s…about social interactions.  I believe you can post anonymously — in the event that you have an idea to share but don’t feel comfortable with it being tied to your name.  (If you experiences difficulties attempting to post anonymously, please let me know and I’ll figure out how to change that feature.  Still learning the tech ropes).

**

Awkward social situation #1:  I’ve gone shopping in the city with some friends and they are pushing me in my wheelchair so I can shop for 5 hours rather than 5 minutes.  We’re in Anthropologie, a store I consider to be quite classy, and we get into the elevator with a saleswoman.  She looks at my face, looks at my feet, looks back at my face and asks, “so, like, what happened?  Did you, like, have bunion surgery?”

Can I, like, get a refund on the shirt I just bought?

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Feet, by Dr. Seuss

          

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Shit Orthopedists Say

I’ve seen numerous orthopedists, from the Bay Area to LA to NYC to Boston to DC.  On the one hand (foot?), I understand that the pure fact that I can “afford” (I put this word in quotes because these visits have presented significant financial, familial, and emotional strain…in addition to provoking many awkward conversations with the insurance company…  “um, I temporarily moved to Baltimore?”) to see such a range of doctors is a privilege and I’m eternally grateful that I have options (at least for the next two years).

On the other hand, seeing so many doctors — all of who seem to have varying opinions on how to read the same set of MRIs, and thus on how to proceed — is confusing and endlessly aggravating.

But when life gives you limes, you should make a gin and tonic.  My drink of choice today is a mug filled to the brim with shit orthopedists say.

1.  Boston, shortly after injury:  “Well, if you were a professional athlete, we would certainly operate on you right now.  But you’re not, so you’re going to have to stick it out for now.”  [translation:  your ability to walk around campus and go about daily life without pain or impairment is significantly less important to me than making sure the Harvard basketball team does well].  Linteresting.

2.  NYC:  “Oh yes, you have X condition and I can successfully operate on it.”  A:  No other doctors see this condition on the scans.  B:  Doctor’s note from visit:  no mention of X condition.  [translation:  doctor is a liar, hallucinates, or has a terrible memory.  In other words, he should not be operating on people].

3.  LA, a year after surgery:  Me:  “I have trouble walking in airports, grocery shopping, walking around town, on campus, etc. and have not found a foot friendly way to exercise.”  Surgeon:  “Touch your toes.”  (I touch the ground).  “See?!  You can touch your toes.  You’re in great shape.”  [translation:  doctor  believes that random acts indicating flexibility are more significant than accomplishing daily life activities without pain or a wheelchair; fails to distinguish between cardio fitness and hamstring laxity].

4.  Same appointment:  “Well, even if you have pain and can’t walk far, you’ll still be able to do everything women dream of in life:  you’ll be able to have babies.”  [!#$@$%*^/Berkeley blasphemy/if we’re going to get down to the facts, being pregnant and having a bum foot would actually be quite difficult…unless, of course, you expect me to stay the same weight and continue to be able to touch my toes, doctor].

5.  Bay Area:  “Man, this blows.”  [translation:  facing reality].

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WheelchAIR

I somehow survived the smog in LA-LA land and have made it home safely.  As a follow up to the last post, I wanted to reflect on my experience using a wheelchair in the airport.

After wheeling my chair and bag to the check-in zone at Oakland, I deposited the suitcase and asked for wheelchair assistance.  I found myself telling a white lie to airlines personnel because I did not feel it was their business to know that I have an obscure cartilage and joint problem; I did not want to field questions from complete strangers.

Wilhelm Wheelchair (named in Berlin)

Keep it simple, stupid:  “I recently had foot surgery, so I’m going to need to use a wheelchair in the airport.”  Man at ticket counter:  “Soccer or basketball?  I’m going to go with soccer because you look like you’d be a fast runner.”  Had I said I was in a sports injury?  I guess my yoga pants and tennis shoes led him to a correct conclusion.  “Softball,” I muttered.

I was thoroughly impressed by my wheelchair man (is there a name for someone who pushes other people in wheelchairs?  “Pusher” and “escort” both have awkward connotations…).  This pleasant young man guarded my belongings at security while TSA frisked me and tested my brace for bomb powder.  He then offered to stop at the ladies’ room and waited outside while I emptied a bladder full from chugging water in the security line.  He noticed my empty water bottle and asked if I wanted to stop at a water fountain to fill it up.  At the gate, which ended up being the furthest one from security (in other words, thank goodness I brought my wheelchair), he arranged for me to pre-board so I could check the chair and get a seat near the front of the plane (less walking required).

I was less impressed by my wheelchair man in Ontario, who left me at baggage claim without saying anything…probably because it was quite late at night and likely the end of his shift.  A kind woman offered to help me.  I thanked her and declined her offer, explaining that I could walk a bit and my suitcase was light.

Concerned about people’s reactions, I intentionally refrained from looking at anyone when I rose up from the wheelchair, picked my bag off the carousel, and wheeled the chair and luggage to my friend’s car outside.

Why are we so shocked when a person is not permanently glued to his/her wheelchair?  Why do we assume that disability is an all-or-nothing, black and white concept?

Anyhow, many thanks to everyone who assisted me — especially to two dear friends who pushed me all around LA with love and laughter.

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This is How I Roll in TUL

(No, I haven’t actually been to Tulsa.  I just like rhymes).

To non-disabled people, airports are hectic expanses that raise blood pressure; airplanes are crammed quarters that make you appreciate how much physical space you typically enjoy on land; the lavatories are odorous cubicles that lead you to ask yourself, ‘how badly do I need to use the restroom?’

To people with physical impairments, all of the above applies and more.

I never realized how much walking is involved between checking in your bags and boarding your flight until I attempted to navigate Logan on crutches.  Epic fail.  I then decided to use wheelchair service despite initial reservations.  I had a  knee-high boot/cast, crutches, and was clearly an injured athlete.  These signs of ability, robustness, and health would negate any thoughts on behalf of strangers about why an otherwise healthy looking young person would be pushed along in a wheelchair by underpaid personnel.

TSA is convinced that I'm hiding bomb powder in my ankle brace.

 

Now that I am out of the acute phase and well into chronicland, I do not usually have visible signs of a disability:  the brace I wear is covered by my pants (I never fly in shorts or a dress…planes are cold and dresses look awkward with tennis shoes).  Yet I continue to use a wheelchair because I cannot walk for more than 2 or 3 blocks’ worth of airport.  Sometimes, standing in line at security will do in the foot.  Do I want to spend my precious amount of foot energy/power walking to Gate 88?  Nah, I’d rather use it to walk from the car to dinner at my destination.

I can now walk to the bathroom or stroll to get a snack at a nearby shop.  In fact, taking periodic short walks is important for my foot and legs so that they do not cramp up or fill with fluid.

You should see the look on people’s faces when I get out of my wheelchair, use the restroom, and sit back down in the chair.  Utter bewilderment.  I am crossing some physical and social boundary.  (Of course, all 20-somethings use a wheelchair in an airport for kicks, right?).

  FOOT FOR THOUGHT

  • Do you have any tips for people with disabilities or injuries on how to navigate an airport?
  • Why is it disconcerting for strangers to see a young person who appears to be able-bodied using a wheelchair or another assistive device?
  • How can a person with a non-visible disability who uses an assistive device in public reconcile their reality with strangers’ preconceived notions?

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