What a difference a year makes: Gaming edition

Last week at 18xx, Alex commented he would’ve never suspected I’d only been playing heavier games for a year.  I was pretty nonchalant in response, but his comment has really stuck with me.  It’s a big deal!  I was looking at my profile and noticed I joined Greater Boston Cube Cartel  almost exactly a year ago on March 29, 2014.   A year ago, I don’t think I would’ve imagined GBCC would so quickly become my favorite gaming group, and the regulars would be among my favorite folks with whom to game.

Thanks to my paradoxical reaction to Baclofen in April 2013, which lifted the veil of chronic fatigue*, I joined Boston Social Strategy (and Slightly Silly) Gamers in May 2013.  I hadn’t realized I joined so quickly after starting Baclofen, but the changes it made to my quality of life were nearly instant.  I still had a lot of executive functioning issues (and still do at times), but I felt really comfortable at BSSG.  I’d been hosting a monthly gaming group since 2011.  At the time, I owned Ticket to Ride, Forbidden Island, Citadels, San Juan and a host of traditional games.  BSSG played games of that caliber and above.  I attended most of the meetups and stuck mostly with lighter games while I continued working to increase my executive functioning.

I joined Beantown Bridge around the same time as BSSG.  I remember how difficult it was initially for me to focus when playing bridge.  I also had problems learning rules when gaming.  But slowly and consistently my ability to employ critical thinking skills improved. I’d been a philosophy PhD student in the 90’s, so the ability used to be there.  After being so isolated and brain fogged since 2003, it felt like such an accomplishment to attend these gaming Meetups a few times a week.

Few people in general, and no gamers, knew how difficult it was for me.  I’d been seeing Lynda, my “disability therapist,” weekly since 2004.  My ability to make decisions was so compromised that we’d talk about what I most needed to do.  On an index card, she’d make a list of three things I was to accomplish in the next week.  We’re talking about simple tasks, e.g. make a phone call or find checks, envelopes and stamps to pay bills, tasks I struggled to concentrate long enough to complete.   In my last neuropsych eval in 2008, several areas of cognitive functioning were deficient, none more than my reading ability. I’d noticed an inability to read subtitles when watching movies and specifically asked that it be tested as part of the eval. It came back that my reading comprehension was in the 6th percentile and reading speed in the 3rd percentile. I also had problems with memory, concentration and processing speed.

Over time I started expressing interest in playing heavier games.  It was difficult at first, but slowly I began to adapt. By March I was playing mostly medium to heavier games and rarely wanting to play lighter games any longer, which led to me joining GBCC. Recently I had a chance to play 18xx and loved it. I’m looking forward to playing many more 18xx games.

In addition to the cognitive improvements, I was also able to go out for the first time in several years. Prior to 2013, if I went out socially a couple of times a month, it was a lot. I was usually too fatigued to even have an interest in going out. Beginning to game and joining Beantown Bridge and GBCC really improved my social life too.

I’m so grateful for the gamers who’ve been patient with me when I struggle to comprehend rules, patiently repeating rules until I eventually get them. Gaming has become a new phase of my recovery. I’m so grateful for all the progress it’s helping me make in not only regaining cognitive function, but in giving me back some confidence that I am able to think strategically and thoughtfully and in helping me develop a social life.


  • From November 2012 until April 2013, I was in the longest and worst chronic fatigue relapse/fibro flare I’d experienced since the accident.  I’d been taking Flexeril nightly since the car accident in 2002 for muscle spasms, but my insurance formulary changed, and it was no longer covered.  Baclofen is typically prescribed for MS patients who suffer from spasticity, but my muscle spasms were severe enough (and I’d already tried most other muscle relaxers) that we decided to try it.  Almost from the first dose, I felt as though Baclofen had given me back a quality of life worth living.  It felt like a wet blanket of chronic fatigue was lifted off me. Without the pain and fatigue to cloud my thinking, over time my ability to game significantly improved.



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.


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.