Why the scooter? (with a show and tell version at the end)

Recently I’ve been asked about my scooter by a couple of people.  Why do I use a scooter sometimes and not other times?  Why do I need a scooter if I look “normal” when I walk?  And the related, why do I go down stairs sideways?   I don’t mind folks asking me questions about my disability.  If I’ve gotten a few questions lately, I suspect others probably have similar questions and haven’t asked.  I thought it might be time to write a post to attempt an explanation.

THE RELEVANT INJURIES.  Most folks know I was in a serious car accident in July 2002, but few know the extent of my injuries.  My most glaring injury was a right open grade II pilon fracture and subsequent non-union.   What all that means is that my tibia and fibula were both crushed just above the ankle and extending into the ankle joint; my tibia also exited the inside of my leg just above my ankle.  My surgeon described it as “the worst possible fracture in the worst possible location” and described my crushed leg as “corn flakes.”  My foot was held on solely by soft tissue.  For the first three months, I had an external fixator to “anatomically hold the leg in place” and had a plate on my fibula.  Then I had a plate added to my tibia and a bone graft in a second surgery.  I was expected to have one or two more surgeries, but I’ve managed to get by without them.

After six months of being completely non-weight-bearing on my right leg, I slowly began to relearn how to walk.  As soon as I was approved to “attempt to return to work,” I moved to Boston.  On my third day back to work in March 2003, I fell down five stairs and was taken to the ED.  It was discovered that the bone graft hadn’t taken, and I had a non-union in my tibia (not caused by the fall).  I spent about a year using a bone stimulator daily and eventually the bone mostly healed.  When I walked into my orthopedist’s office two years’ later using only a cane, he confessed that he hadn’t expected me to walk again.  I had a broken leg for two years!

At the ED, it was also discovered that the 2nd and 3rd toes on my right foot were dislocated.  My 2nd and 3rd toes are webbed, so they act as a unit.  The first joints pushed the second joints in and down, so I ended up walking on the second joints.  This injury has limited my walking far more than even the severe pilon fracture.  Every step I take is painful because I walk on bones.  My foot is perpetually swollen (and will be for life) and numb and tingly with nerve damage.  By the time it was discovered and I got in to see one of the top toe orthopedists in Boston, it was determined that my toes had been dislocated for too long to have more than a poor-fair prognosis, even with surgery.  Wearing an orthodic was considered the best option, especially since it wasn’t known if I’d be able to walk again at that point.

THE IMPLICATIONS:  Well I did walk again but not without great difficulty.  I spent about 80% of the first five years after the car accident working my ass off in PT.  If you see me walking or going up stairs, you’d never know I had such a traumatic injury.  Going down stairs is an entirely different matter; it’s the only time I look disabled.  Because of injuries to my hip and knee, they don’t usually cooperate to enable me to go down stairs normally.  It usually looks and feels totally weird, so I go down stairs sideways, which also helps with the pain.  I say usually because sometimes I can go down stairs and look totally normal, but it’s not the norm.  If I walk too far, I’ll develop bone pain in my tibia.  If I walk on inclines or uneven surfaces, I’ll develop ankle pain.

With my toes, I have to be VERY careful not to walk too far.  If I do, the ball of my foot (where I walk on the bones) becomes inflamed and exquisitely painful.  If I overdo it, it can take a week before I can walk again without severe pain.  I can walk a few blocks without risking injury, though I can’t walk a few blocks on several consecutive days.  In the fall of 2014, I went through another round of PT to try to increase my walking distance and improve my ability to go down stairs step-over-step.  It helped a little but not as much as I’d hoped.  I have a prescription for a new type of orthodic to see if that might improve my walking distance.

Here’s how bad it is:  In July 2014, I joined the Huntington YMCA after the pool renovation was complete.  I figured I’d be able to at least walk in the pool without issue.  Chest-deep water reduces weight bearing to about 10-25% of body weight.  Nope!  It didn’t take much before my foot was inflamed and I was set back a week.  Next I tried a variety of shoes and ended up wearing water shoes in the pool.  They definitely add a drag, but it was the best of the options.  But it still wasn’t enough to stave off the inflammation.  After several more attempts, I found that a Drew shoe orthodic I removed to replace with my custom orthodics enabled me to walk farther and with a bit less pain than on land.  With these modifications, I can walk almost a mile in water or do a full aqua aerobics class (aqua kickboxing is my current favorite) at most two to three times a week without triggering the inflammation.

I hope this post has answered any questions you might have.  If not, feel free to ask me.

tl;dr

Here’s the show and tell version:

leg xrays 010 (480x640)This image shows my right leg pre-surgery but after my tibia was put back into my body.  The surgeon called my leg “corn flakes.”  My foot was held on solely by soft tissue.

leg compareI wore this 8 lb. external fixator for three months to “anatomically hold the leg in place.”  You may notice three long thin metal wires that go completely through my ankle to hold it in place and hold my foot on.  What’s not very visible are the three screws drilled into my upper tibia to support the weight of the fixator.

leg xrays 014 (640x480)

This image shows what my right leg looks like today, well actually in 2005.  If you look closely, you can still see a few black spots, which are holes in the bone that we weren’t able to get completely healed.

toes xray 005

Finally, this image shows the dislocation of the 2nd and 3rd toes of my right foot.  If you look closely, you can see the bones I walk on that cause me so much pain.  Walking more than a few blocks will cause the ball of my foot to become so inflamed and painful that it can take me a week to walk “normally” again with only moderate pain.

Shoe frustrations

When I got out my boots this year, two pair (my snow and Dansko boots) had succumbed to “the case of the crumbling soles.”  This situation may be a nuisance for some, but for me, it’s a pretty big deal.  Since the accident, I’ve been unable to wear shoes off the shelf, with very few exceptions.  The combination of the way my foot was deformed, the need to wear a pretty substantial orthodic to make the pain of each step manageable and the perpetual foot swelling expected to last the rest of my life makes finding shoes that fit an arduous task.

For the third time this super snowy season, yesterday I went on the hunt for a pair of winter/snow boots.  At this point nearly everything is sold out, but with record snow on the ground, I figured I’d try one last time.  I went to store after store in Downtown Crossing to no avail.  On top of all the problems I have trying to buy shoes off the shelf, the detached tongue that helps make snow boots waterproof almost universally limited me from being able to get my foot in the boot, as there was no stretch.  The closest I came to finding boots was a pair of men’s Sorel Duck Boots at City Sports.  I couldn’t get my foot into the boot with the insulation, but if I removed it, I could even fit my orthodic in the boot.  Unfortunately, removing the thick insulated liner made the boots way too big, even with my orthodic.  I was also concerned about how cold my feet might be sans insulation.

After trying on SO many boots yesterday, my foot still hurts today, even when elevated, and it feels more swollen too.  While I’m not completely SOL, I’m not looking forward to the melting snow.  I still have a VERY old pair of hiking boots (think Carbondale) that somehow fit, but I can’t use my orthodic in the boot so it’s more painful.  I also have a pair of men’s P.W. Minor ankle high boots that were the first pair of shoes I got several years ago to accommodate my orthodic.  I guess I’m going to have to carry extra socks with me (and maybe shoes) to change into if they get wet.  Then do I wear the wet boots back home??? Ugh!  Traveling the rest of the winter and into the spring, at least until the HUGE snow banks melt, is not going to be pleasant.

I feel frustrated and stuck.  I think the worst part may be that I worked so hard in the fall (seeing a new physiatrist, a new round of PT at Spaulding, new orthodics, etc.) to increase my walking distance.  I was making progress.  Without proper snow boots that can accommodate my orthodic, walking is going to be significantly more difficult for the next couple of months, and my progress will probably be set back.  Oh well, I’ve been through so much worse. I’m sure I’ll figure out something.  I always do…

2014: The Year in Review

2014 has been an awesome year.  After seeing so many publish their Facebook year in review, I decided to publish my own.   Here’s some highlights of the year.

HEALTH

The “long road back” I was warned of following the car accident in 2002 continues at a glacial pace with some significant strides (pun intended).  After joining the YMCA, seeing a Spaulding physiatrist, doing another round of PT and getting a new orthodic this year, I’m walking the farthest I have since the accident.  I have no idea how far I’ll be able to go, but in December, I was able to clock .5 mile on the treadmill.  I realize .5 mile sounds like nothing to most folks, but after spending six months completely non-weight-bearing, having a broken leg for two years and spending several years in excruciating pain after walking a block, .5 mile is HUGE for me!

After so many years of doing so little walking, the issue isn’t just what my foot/leg can bear; now all muscle groups involved in walking need to be reconditioned, which is why I went to PT and joined the YMCA.  The paradoxical effects of Baclofen continue to keep the chronic pain, muscle spasms and veil of fatigue at bay, although since joining the YMCA in July (after the newly renovated pool reopened), I’ve had some setbacks as I struggle not to push too hard or too quickly.  When I get discouraged by the setbacks, my PCP likes to remind me that it wasn’t too many years ago that I needed an electric lift recliner because I was too fatigued to get up on my own.  It’s quite frustrating to hit the pain/fatigue wall, especially when it’s usually of delayed onset, but I’m thrilled with my overall progress.

My hands, due to bilateral medial and lateral epicondylitis, continue to be my primary source of pain.  I did a round of OT early in the year which brought back significant functionality.  Prior to OT, you could just look at the way I held my hands and tell they weren’t right.  I could neither open or close them all the way and had difficulty turning palms up.  OT helped and mid 2014 found my hands doing quite well, but in the last month or so, the pain, inflammation and stiffness have returned (despite continuing to stretch them).

In the last couple of months, I’ve noticed a shift from referring to “my accident” now as “the accident.”  I wonder if there’s psychological significance in that shift.  After a decade of seeing Lynda regularly (every one to three weeks depending on how I was doing), in June I decided I was doing so well that I asked her how infrequently I could see her and have her still be available should I need her guidance.  For the next year, I’m going to see her every three months and then likely go to as needed.  I’ve been seeing Lynda, a certified MSW whom I refer to as “my disability therapist,” since 2004.  She’s been my sounding board, guide and witness to my efforts to recover and find a life worth living following the accident, especially during the bleak years.  After my cat Strell (who was euthanized in 2011), Lynda has probably been the most important person in my recovery.

I’ve finally lost the Baclofen weight and am at my lowest weight in several years, with much more to lose.  It was very difficult to see Baclofen give me so much but quickly add 40 lbs in the process.  Stopping and reversing that course has been quite difficult.  I seem to lose a few pounds then plateau for weeks or months, rinse and repeat.  There was hope that beginning to exercise would help with the struggle to lose weight, but I knew better given my previous experiences.  The best we can come up with is that some of my medications, especially Baclofen, are the obstacles.  I tried titrating down and/or off a few meds, including Baclofen, but that may have contributed to the setback I had so I’m back on them.

At the YMCA, I’ve been doing mostly pool work, increasing slowly from 24 to 32 laps (25 yards) before having to decrease due to overdoing it.  I’ve focused on lap walking in the hopes that it would help me walk on land, and I think it has.  In PT, the routine I’d created was judged to be as good as anything they could create for me.  While I began with simply walking laps, my laps are now comprised of jogging, side to side/grapevine, knee lifts, kick backs, lunge walking and running backwards.  PT did add core exercises, which basically feel like I’m playing around in the pool.  The one frustration has been not being able to walk, even in the pool, without pain.  I started barefoot, but quickly went through a variety of shoes until I found a water shoe that allowed me to walk for the 30-40 minutes it took to complete my routine without inflaming my foot.  In the area where I walk on the bones of my 2nd and 3rd metatarsal, the shoe is wearing out quickly.  I just discovered some insoles I’d removed from shoes to replace with custom orthodics.  Despite not having a metatarsal pad, I’m hoping they might help.  In addition to pool work, I’ve done aqua zumba and aqua aerobics.  I look forward to new aqua classes coming in January, especially HIIT (high intensity interval training).  I’m also starting to walk on the treadmill some to see how I can progress on land.

After moving from a one bedroom to a two bedroom four years ago because I needed a live-in PCA, in June I moved back to a one bedroom.  I’m glad to be living alone again.  It’s been empowering to see that I have a difficult time finding enough work to fill three hours/week for my PCA when I used to have 20 hours/week of assistance when I previously lived alone.  Finding a reliable PCA was a nightmare, but I finally have a good one.  I don’t miss having a roommate and like that I’ve taken on a lot more household responsibilities.


WEALTH

For years, I’ve been planning to help put Ellie through college.  About a year ago, I told her I’d give her money.  Since then, I’ve offered a few times and she’s either not responded or told me no, so I told her to let me know when I can help.  She’s just finished up her first semester at LSU without contacting me.  It saddens me that I haven’t been a part of her life since the accident (she was 5 at the time), but I don’t want to be seen just as the aunt who just gives her money.

I found a great credit card deal (spend $500 in first three months, get $100 back), so I applied.  It’s hard to pass up a 20% return on money I’d be spending anyway.  Since I pay off my balances in full every month, it seems like free money.  I’ll probably use the card for the first three months, then set it aside once it’s served its purpose.  What’s year in review worthy is that it came with a free credit score.  I knew my score should be high, but I haven’t seen it in over a decade.  There were also the student loan issues a few years ago, so I didn’t know what effect it would have on my score.  809!  With the highest possible being 850, I suspect 809 may be the max (or near max) you can have without a mortgage and car loan.  I continue to remain debt free and save money each month.


RELATIONSHIPS

Although I wasn’t in a primary relationship in 2014, after six years together, Marty and I spent about six months considering the possibility of a primary relationship.  Ultimately we decided to keep things as they are, so Mondays continue to be “Martyday.”  After not seeing Chris (skydiver) for most of 2013, we resumed our “irregular regular” dates.  I thought our seven year FWB relationship might come to an end with him moving to Portland for grad school, but that’s been postponed for a least a year.  One side effect of turning 50 seems to be that, for the first time, I’m actually beginning to feel a desire to “settle down.”  It’s only about 25 years late.  I’m not sure how that will play out, but here’s to 2015!


GAMING

If my 2014 had a tag line, it would be, “the year I became a gamer’s board gamer.” While I continue to attend, host and enjoy events with the Boston Social Strategy (and Slightly Silly) Gamers meetup, in July I began attending the Greater Boston Cube Cartel meetup group (an offshoot of BSSG focusing on heavier games).  Initially I felt unsure and intimidated, wondering if I’d be able to keep up. Not only did I find my fear unfounded, I found myself being competitive and winning my fair share of games.  It didn’t take me long to become a die-hard member of what would quickly become my favorite meetup.  I also continue to play bridge on Thursdays with Beantown Bridge and occasionally attend Beantown Gamers at MIT.


CULTURE

Having always loved live theatre and following years of being spoiled as Lisa’s “theatre buddy,”  I decided 2014 would be the year I commit to being a volunteer usher for Huntington (at both Huntington and BCA) and Speakeasy (at BCA) theatre companies.  Between them,  I’ve ushered and attended several productions in 2014:  Venus in Furs, The Seagull, The Whale, Smart People, Far from Heaven, Guess Who’s Coming to Dinner (one of the best shows I’ve ever seen), Of Mice and Men (special Huntington performance), Ether Dome, Bad Jews, Awake and Sing and Necessary Monsters.  The only one I missed, sadly, was Carrie: The Musical because I didn’t include enough availability.  I really enjoy ushering and plan to continue doing so indefinitely.


FALSE STARTS

Midyear, I’d thought I was doing so well that I drafted an email to see if I might return to my last employer, Boston Public Library, as a volunteer two to three afternoons a week to see if I might be employable once more.  If I was going to have a setback, I’m glad it happened before I sent the email.  Prior to the accident, career was my primary focus.  It’d be amazing to return to my career and feel like a useful and productive member of society again.  Part of the idea for volunteering was realizing that after a decade of being out of the field, I’d have a lot to catch up to do.  Another significant reason is that I don’t know how much I can handle, as evidenced by my setback after joining the YMCA.  How much I can tolerate and push myself without negative consequences has been an ongoing issue for me, but the only way to know is to test the limits.  I was disheartened to find that I wasn’t ready to attempt to return to work (walk first then work!), but even to reach the point of thinking I might attempt it is pretty amazing, and for that, I’m grateful!


GOODBYES

Sadly, after four years (the first three of which I co-hosted), the monthly tickle parties are no more (Nina moved).  In February, I filled in for Nina as host.  In March, I attended the final tickle party.  The monthly parties were a great way to help grow an amazing tickle community in New England.  I love being tickled and have been getting far too little of it since 2013, when I lost my last regular tickling partner.  Even if I wanted to host the parties, my place is too small now that I’m back in a one bedroom.  Perhaps I should recommit to tickling in 2015 and find another regular tickler.  There’s a few guys waiting on me to set a date, so I just sent emails to schedule some tickling for January 🙂

I let go of just about all of my remaining books (several hundred) when I moved in June.  I only have about a hundred left.  I’d been significantly weeding my collection with each move, but I don’t think I realized how much loss I’d feel by not having physical collections any longer; having digital collections just doesn’t feel the same.  The best counter to that loss has been using the last of my primary bookcases (1/3 of the HUGE floor to ceiling bookcase Steve built when I moved in with him in 1990) to house my new collection of games.

Unfortunately, in December as I was on my way to host an event for BSSG, I lost a backpack with five of the games I’d acquired this year.  I retraced my steps to no avail.  At least the games I lost were lighter weight games (Pandemic, Eminent Domain, SmashUp, Coup and Love Letter).

 

2014 was indeed a year of being headed in the right direction.  I hope the same for 2015!

I have a story to tell

In the last year and a half, I’ve made huge strides in recovering my life following the car accident in 2002.  To say “I’ve been to hell and back” is an understatement in describing the last decade.  For far too many years, my quality of life was so abysmal that I had no desire to live.  It got to the point that I’ve had a DNR/DNI in place for the last few years.  I actively wished to die and was working on an assisted suicide plan should I reach a certain point.  I’m happy to say that today that point isn’t even on my radar.

Though I wasn’t believed at the time, in retrospect my medical providers are now accepting that I wasn’t depressed.  Chronic fatigue and chronic pain had robbed me of any semblance of a life worth living.  When my paradoxical reaction to Baclofen lifted the veil of fatigue and my affect, which had been inaccurately defined as depressed, likewise altered, the docs had little choice but to come around.  It’s experiences like these that elicit a desire and, in some sense, a need to share what I didn’t feel able to share or what wasn’t or wouldn’t have been believed if I did share it when I was in the middle of it.  Not ever expecting to make it out the other side and yet doing so, I have a story to tell; a story that unfortunately carries more credibility being told in past than present tense.

As intense as that small snippet sounds, when I managed to make it out of my apartment, I tried to appear as “normal” as possible.  I shared little of what I was going through with anyone other than medical providers, especially Lynda, my “disability therapist.”  I’d learned in 2003 that by sharing what was really going on with me, I was viewed not as tamm, but as disabled tamm.  I learned that if I was ever to be seen other than through the lens of disability, I’d have to do my best to hide it.  It is to and for those living with hidden illnesses and/or disabilities or a loved one that I feel called to share my story.

I’m far from completely recovered, but I have back more of my life than I ever imagined I might recover.  Along the way, I made some decisions that I fully stand by today but which might be viewed  critically or seen as offensive by some.  I’ve been struggling the last couple of weeks with starting this blog because I refuse to live my life in a closet.  If I’m going to share my story, I’m going to share all of it, because the parts that others might view critically are, in many ways, the parts that helped me to persevere.  I’ve decided the best resolution is to mark entries in which parts might be deemed too much for some as “NSFW,” even though I don’t intend to be sharing at such a graphic level as to make them so.  If you think you might be offended, don’t read it!