So here’s a funny thing:
As we’ve been preparing for this fall’s Walk Around Philadelphia programing, I’ve had a set of vascular complications evolving that may eventually severely impact my walking.
The message below references physical vulnerability, wounds, bleeding, and general human mortality.
I’ve left out the actually graphic images ’cause even though they’re pretty neat I know that some of you out there might not want those showing up unexpectedly.
Read on below for a bit more about some stuff that I’ve been navigating on the back end, or you can just skip it and join us to kick-off the walk this week:
- Wednesday – Virtual Walk Talk via Zoom
- Thursday – Exhibit happy hour @ Cherry Street Pier
- Fri/Sat/Sun – the walk begins!
Some of you already know this, but I’ve always had a pretty interesting vascular situation in my right foot/ankle/leg.
I was born with some neato big red birthmarks on my right leg (“port-wine stains”)
When I was in middle school / high school I was oftenshy about wearing shorts or flip flops; folks would ask me what was wrong with my leg or what had happened to it.
Somewhere along the way around my college days, these veins started swelling, enlarging, etc, into what turns out to be a mild case of a funny genetic situation called “Klippel-Trenaunay Syndrome”.
They’ve been quirky, and I’ve always harbored a lil worry about how much I’d bleed if I just scraped my leg on a thorn or something, but I eventually got a lot more comfortable w/ just accepting this “feature”, letting go of the self-consciousness around my weirdo veins and enjoying wearing shorts & flip flops…
.. and then, one day in 2017, while sitting ’round the campfire with my housemates, I scratched at a lil scab (what I thought was a bug bite) and felt the wetness on my ankle and notice that I was, in fact, bleeding pretty significantly from that ankle.
It took a minute to bandage up and I didn’t think much more about it.
But the following summer, I watched that little scab re-form, and a second, larger one right next to it (pictured above.)
These weren’t external wounds, they were forming under pressure from below the skin.
Which is disconcerting.
And then, one quiet evening (July 8, 2018) as I was about to hop into bed, I looked down and noticed that I was standing in a puddle of blood.
There was blood splattered all over the side of the wall by my bed too – it was pretty impressive, and looked like some sort of murder scene.
This was even more disconcerting.
(I have some pretty cool pictures of this, but again won’t include them here.)
Those of you who’ve seen my (WARNING: graphic!) surgical images from my past life as a photographer know that I’m not too squeamish about blood & stuff, but there’s definitely something troubling when it’s your own blood that’s pouring out on the floor.
Not life threatening… but… messy.
And also kind of super inconvenient.
It’s kind of a “drop everything, sit your butt on the ground, elevate your leg, apply pressure, and call for help kind of situation.”
(Thank you to my former housemate Meagan who showed up to help with that first cleanup.)
And then that lil scab formed and bled again the next summer in 2019, and there was that wonderful moment on September 1 when, well…
You know the old jokes with the format “A man walks into the bar, and…” ?
Well, a JJ walks into the bar, bringing a couple young Eastern-European couchsurfers that he’s hosting, and he starts chatting with the bartender and…
… gets interrupted by a patron tapping him on the arm who says:
“Excuse me sir, are you OK? I think you’re bleeding…”
… and there are indeed small puddles of blood across the floor of the bar…
… and my sock is sopping wet with blood and I hadn’t felt a thing.
(Huge thanks to the nurse who was on hand and helped me get that bandaged up with paper towels… and if you happen to know the random person who was at the next table who filmed the whole incident of me again sitting down on the floor & elevating my leg, I’d love to see that footage.)
As you’ve probably gathered, while springing the occasional leak is kinda neat and interesting in a “what wild amazing creatures of flesh we are”, it’s also not exactly my favorite thing and hella inconvenient.
At this point, if your question is:
“Have you sought medical attention for this?”
The answer is yes, of course…
… in fact way back in 2006 I saw a vascular specialist who fried my greater saphenous vein with a laser, and closed up some other vascular formations w/ some sclerotherapy…
… and it didn’t really change much of anything…
… which didn’t bother me that much because back then I hadn’t yet had these whole “suddenly bleeding all over the floor” situations.
Thankfully, the past few years it hadn’t happened… a lil scab sometimes formed, and then receded.
And then this summer another one started forming in June, and did something different:
It didn’t burst & bleed all over the floor (yay!)
But it did form a growing painful open wound (ouch!)
Usually, in men, these kinds of venous leg ulcers apparently appear in individuals aged 70-79…
I’m apparently roughly 30 years ahead of average.
Just in that one spot on my ankle.
This was super disconcerting in a different way: when I’d get up in the morning, it’d be about 20-30 mins before I started feeling a little burning sensation in my ankle.
The whole area was inflamed.
And yes an actual open wound, the kind that flies land on when it’s not covered.
And that is a whole other kind of unpleasant and weirdly scary / vulnerable feeling, when the flies are landing on you for lunch.
Which is why I spent a bunch of time w/ my legs up the wall during my family travels this summer…
… and then wrapping my leg with these special compression bandages that the doc prescribed me.
They’re expensive, and a pain to put on and take off, and hot as heck in the summertime, but seemed to help.
Now here’s a funny thing: the funny foot wrap basically healed up the ulcer on the ankle… but along the way, it developed a second pressure ulcer on my achilles tendon, where it was rubbing as I walked.
Mind you, this is the guy who is looking forward to walking another ~120 miles around the perimeter of the city over the coming month.
I still have funny veins, but the ankle wound is all healed up for now.
So is the one on my heel.
I’m back to basics, which is “wear compression socks pretty much all the time” and “put your feet up for 20 mins at a time several times a day”
It’s inconvenient, but for now it’s fine.
I am in fact quite fine, and in good spirits and good health.
This thing isn’t going to go away.
It’s going to be a lifetime’s worth of tending and managing.
And it is not inconceivable that I might need to make some major lifestyle changes on short notice.
And yes, I did see that recent article about vascular surgeries that starts off with someone w/ a wound on their foot ending up with an amputation.
Here’s the thing:
Every facet of my life right now requires a decent bit of mobility.
While I do spend more time than I’d like on email (if you’ve read this far, dear God, bless you), my work as a massage therapist, my local community organizing, and of course my work on Walk Around Philadelphia… all of these require a decent amount of being on my feet and being mobile.
And not being able to walk in the same way would suck. But actually, why look at it that way?
Especially given that, as I’m reminded by my friends in the disabilities field, ability is only temporary, for all of us.
All things change.
And we can’t deny or stop change, we can only work to shape it and shape our lives around it.
(And yes that’s a loose allusion to Octavia Butler’s Parable of the Sower, which I’d highly recommend if you haven’t yet come across it.)
Speaking of book recommendations:
There are two other books that I’ve come across that have really helped me wrap my head around some ideas about our physical vulnerability as these creatures made of magical fragile flesh. It’s the one thing that we all have in common and that our society doesn’t exactly do a great job of addressing.
- “Being with Dying: Cultivating Compassion and Fearlessness in the Presence of Death” by Joan Halifax
- “Our Greatest Gift: A Meditation on Dying and Caring” by Henri Nouwen.
(No, I’m not worried about dying from this thing just yet – I just think that these books are worth reading and integrating well *before* you have to start grappling with these things amongst your friends and family.)
The first book is written from a Buddhist perspective, the second from a Christian one, but both are pretty broadly secularly accessible. Highly recommended.
“This is a quote box. What kind of clever quote would I put here, after having just shared a whole pile of stuff that I feel like I want folks to know about me, just so that they understand that there’s a real messy human made of flesh and blood behind all of the public programs & community outreach and what not? How do I transition to what’s next?”– me
Ok that’s a lifetime’s worth of stuff but here’s what’s coming up this week & month:
Walk with me while I still can…
The fall 2023 Walk Around Philadelphia starts this Friday!
I’d love to see you out there. It will be my 12th walk!
With the caveat that, if a few days of long walks ends up aggravating the ankle thing, this might be the first walk where I don’t actually do the whole thing, and instead just show up at the start point to send groups off. Or even have a friend do it.
I’m going to continue to work on prioritizing my own health and wellness as I navigate these offerings.
As of now, things are looking good, and I’m psyched to set out on Friday. That segment has already reached capacity and is waitlisted.
As have several others, so hurry up and sign up if you’d like to join us!
Join us for happy hours & virtual events!
Can’t make one of the walk days?
You can join us this Wednesday via Zoom, or come for Happy Hour on Thursday at Cherry Street Pier to help launch the walk.
And there’s a bunch more offerings just like that as the walk weekends unfold:
- Virtual events on Wednesdays:
Aug 23, Aug 30, Sept 6, Sept 13 & Sept 20
- Happy Hour Gallery Hours on Thursdays:
Aug 24, Aug 31, Sept 7, Sept 14 & Sept 21
I’d of course love to see you at any of these.
Ok that’s it for now! I’m heading straight from composing this missive into cooking up a giant pot of soup to feed my neighbors, as I host a regular neighborly supper on 3rd mondays.
If you’d like to support these things that I’m working on (the walk, the community organizing, and yes even the self-care) I’m always grateful for your generous support.
Ok, that was a lot!
Ok that was a lot…
If you read through that whole thing, I’m extra grateful to have you know these few weird things about me…
This thing of being made of vulnerable flesh, it’s all of us. So may we be grateful for our bodies and be tender with them.
And may we be kind to all those around us, who all carry their own injuries and vulnerabilities and self-consciousnesses, even if they don’t blast them out to you via weird newsletter / blog post announcements. 🙂
And whatever you may be working with or holding right now, in your body or in your heart, I wish you ease with it, and breath, and beauty around the corner.