Personal Independence Day

image of Jan standing free hand in the sun

Jandroid 3.0 – better, faster, stronger!

As everyone knows we just celebrated Independence Day in the US this past week (July 4, 2014). What you may not know is that I also celebrated some personal independence that I’ve newly regained thanks to hundreds of hours of hard dedicated work in the therapy pool, my kitchen and garden, and on my bike. That is, I got my core muscles back to some degree, allowing me to bust some new (old) moves again. This included climbing not one but two sets of stairs at Mt. Tabor in SE Portland, OR  for the summer solstice this year. And playing a little badminton with my fairy goddaughters (11 and 15) on July 4th without ANY crutches! (And without removing too many ribs). Woo hoo!! No, no big deal for the orthotypical. But a huge personal achievement for me for multiple reasons besides the obvious which I’ll explain.

Mt. Tabor is one of Portland’s many scenic park areas, built on an inactive volcano right in the city limits bounded by SE 60th to the west and about SE 82nd to the east, and E Burnside to the north, and SE Division to the south. It is known for holding several of our currently still active open drinking water reservoirs (for now). The reservoirs make for a very nice scenic view both on the mountain, and looking out over the city. (Those on the west side get to see lots of great sunsets.) The park itself is riddled with tons of zigzagging hiking trails that ascend and descend the mountain on all sides affording many wonderful views of the city. Thousands of people of every shape and size climb the stairs at Mt. Tabor every year as part of their wellness walks and runs and sight seeing such that doing so is no big deal in and of itself.

Unless you were wheelchair bound two years ago, like me.

But I did not know this was going to be the case when I suggested I try climbing the stairs to Mt Tabor to my doctor in January 2012. (Bwahhahaha… thump! It’s a good one, in hindsight). No one did.  I warned him at my first visit in three years in late January 2012 that “whatever I got is getting worse”, and asked to see the geneticist finally. I bemoaned my rapidly weakening body and steadily declining ability to walk or exercise much. So I mentioned my thought that stairs would be my best bet for getting any species of cardiovascular workout in my declining condition and said “I think I’ll try to clmb the stairs at Mt. Tabor now to stay in shape”.  My doctor’s office used to be at the base of Mount Tabor at that time, so he knew it well. He agreed that sounded like a good idea, and kindly referred me meanwhile to the geneticist who diagnosed me February 14th, 2012 with Hypermobile EDS. (We ruled out Kyphoscoliotic and Vascular by blood test later.) But I never got to Mt. Tabor after that visit – until a couple weeks ago!

I had no idea I’d barely be able to walk even another two weeks before becoming wheelchair bound for several months and fighting to restrengthen enough to walk at all, much less up stairs for the next two years. I laugh in 20/20 hindshight now at my ambitious goal and valiant determination to keep exercising despite literally falling apart with every step! (Typical of us EDSers – always over-achieving and hard-charging). This after an active life of intricate and often fast Balkan folk dancing, photography, biking and even running once upon a time (in high school). You can understand why I had such trouble grasping what was happening to me.

Plus, as anyone with Ehlers-Danlos Syndrome can tell you, there is no manual for it – every body is literally different, and it onsets differently for every person who has it. (I ultimately split my R SI joint, and subluxed my R leg, fingers, ribs and toes before my “storm” was over, ouch!) So truly no one could warn me what was coming. (Also a blessing in hindsight – ignorance was bliss!) Thankfully, such an onset “storm” or “cascade” is pretty rare – most have a more gradual onset, involving slowly but steadily worsening numbers of joints and body parts over time unless they experience a trigger such as a bad illness or car accident or death in the family. (Adding to the difficulty in recognizing and getting it diagnosed). I had no such trigger, making this all the more surprising and unexpected.

I became so busy just trying to wrap up my consulting work and finding household help (I lived alone) that I had no time to feel sorry for myself or bemoan lost ability however. All thoughts of meaningful “exercise” much less stair climbing vanished in a blink, only to be replaced by praying I could keep hauling my shattered body to the bathroom on my own. (Toileting help was one line I wasn’t ready to cross yet, so I did whatever it took to manage myself – pain or no!) It was all my physical therapist (PT) could do to get me to stand at all, or even lie down and get up again, much less walk. (Friends kindly hauled my shattered carcass around to doctors and the store). But she wisely focused instantly on my core muscles, specifically my transverse abdominis (or “TA”) as it was clear that not much else was going to really help at first. Some with EDS even experience full diastasis recti in which they split their TA – and no, not just pregnant women either! (That should be a red flag, pregnant or no).

Blessedly my SI joint seemed to heal on its own with rest (some use an SI belt), though my right leg remains slightly askew if I’m not mindful and the bones in my right foot no longer “fit” right, making walking on it tricky still. My PT also got me on a stationary bike after just a few weeks, which lit that bulb in my head – and got me back on my old mountain bike not long after in an effort to regain any form of mobility outside of a wheelchair!

Well, she set me on a great path, and it’s finally paying off two years later. (Thanks Sukhee!) This past solstice, I biked to the base of the stairs on SE 60th. Then I schlepped over to the stair case with both my crutches (I really only need one for walking on level ground now, but brought the second for stability on the stairs), and managed to tackle that goal I’d set two and a half years ago.

image of stairs at base of Mt. Tabor

Base of Mt Tabor

It took two crutches, two pain pills, two and a half years, and two buckets of piss and vinegar (!), but I got up the suckers in a relatively short time – finally! I was rewarded with this lovely view of the lower reservoir as sunset advanced.

image of lower Tabor Reservoir

Lower Tabor Reservoir


Feeling my oats, I decieded to schlep around the back of that reservoir and confront the second set of stairs behind it, leading further up the mountain.

image of more stairs on Tabor

Second Tabor staircase

I rested a minute while updating my buddies on Facebook and gathered my spoons to mount that second, steeper set. And by golly, I got her done!

image of sunset on Mt Tabor

Sunset on Mt Tabor

I wisely stopped at that level and  enjoyed a lovely sunset from my perch. (There’s yet another set of stairs above those, and more trails above that).  I will admit to having a small victory cry to myself while passersby looked at me oddly. I truly didn’t care – I’d achieved a personal summit and on a sunny solstice in Portland to boot!

Then I carefully picked my way back down (I had no desire to undo two years worth of very hard work in a single tumble, don’t worry!) and rode home to a righteous night’s victory sleep. I have resolved to go back and attempt it with one crutch again soon, but this is still in the works. Meanwhile, I’ve continued eating right (for me), juicing and working out in the therapy pool and on my bike toward that end. (My current full time job – rebuilding the Jandroid).

It’s been paying off, because I was since able to stand free hand and play badminton with my fairy goddaughters for July 4th this year as mentioned, FTW! We were in a small yard, which helped keep things manageable (no one hit the bird too far or wide lest it go in the garden or neighbor’s yard). And the grass was soft, so I wasn’t as afraid of falling (and never did). I can’t tell you what a joy this was for all of us, needless to say!

image of Jan's abandoned Loftstrand crutch on the ground

Living dangerously…

Of course my ribs and my arm hurt aftewards, but they hurt anyway, and it was no worse than at the height of my storm. I.e, I’m getting more “bang” per pain “buck” now – able to bust more moves for the same pain level, which I’m now used to. (My kingdom for some rib glue, please!) Even my right leg mostly stayed in place, not taking me down quite as readily as usual. Behold, Jandroid 3.0! Better! Faster! Stronger than in 2012 by far!

picture of Jan holding a badminton racket

Jandroid 3.0

My thorax (upper back) and neck are still in constant burning pain. But that’s true no matter what I do, so I might as well enjoy myself in the process a bit, right? So I am. And yes, it feels really really good. Meanwhile, I am starting to “toddle” without the crutches a bit even on rough ground thanks to being able to lift both legs better, such that I think I’ll be able to swap my last crutch out for just a cane soon (I hope!) – as I no longer need to lean on it so heavily. (Thank you TA!) I’ll say this much – it has definitely made me easy to please, as I don’t sweat the small stuff any more, and I get to celebrate lots of little victories just like a growing child again. Life is much sweeter, especially any form of mobility that doesn’t leave me gasping like a fish or dragging a leg in pain!

Take THAT EDS! – Jandroid 3.0 – better, faster, stronger than in 2012, by far! (Even if I’m still half the Jan I used to be, sigh, I’m slowly coming back!)

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One Response to Personal Independence Day

  1. Jan Groh says:

    And >of course< my body proceeded to flare mildly right after posting about all my success recovering! That said, like the stock market, I'm still heading in the right direction overall, so I'll take it. You can't keep a good droid down!

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