Update #4 (6/7):
Goal reached!

I finished my walking this evening. I added another 59 minutes on Thursday with an evening walk around the neighborhood, and today managed another 6 hours walking up and down some nearby parks and again crossing the Woodrow Wilson bridge.

I don't have any particular reflections to share this time; it's getting late and I'm tired from walking. I definitely overdid it my first day with the 18-miler. My hip has been hurting ever since. I pushed through it for the rest of my walking time but I think now it's time to rest.

I want to give a heartfelt thanks to all of my donors - you have all made a huge impact for the Foundation and I'm so glad that we blew past my first goal and even reached my stretch goal of $2500. Of course, the walking holds great significance to me on its own, but the success is made so much sweeter knowing the Foundation will benefit from it.

Thank you again!

419 - 59 - 360 = 0

1303 minutes of dedicated walking completed!

Update #3 (6/4):

I’ve been pretty focused on work and some volunteering this week, so I haven’t had much time to share an update or go walking yet. Thankfully, I already knocked out 142 minutes of walking on Monday, getting out in the park and reprising last year’s long walk to dinner across the Woodrow Wilson bridge with Anya. I added another 35 this evening walking around the adjoining neighborhood. I’d say I’m still on track to finish without any issues. I’ll plan one more big walk on Saturday to finish it off. I’ll probably sneak in a small walk or two before then.

I’ve had a lot of opportunity while walking to reflect (or obsess, per my last update) over my life with a leak. It boggles my mind that I survived 1303 days of that life; scheduling 1303 minutes of walking stresses me out enough on its own! Honestly, when it comes to leaking, I was dead lucky. My severe upright headaches waned to exertional headaches and other, less debilitating neurological symptoms after the first year or so. I still don’t know why it changed. What this meant for me, though, was that I could function, albeit at a low level, and never without pain.

College with a leak is a unique experience. Being on your own for the first time obviously lends itself to significant adaptation and growth. Add in the constant need to plan around chronic pain, and life gets real weird, real fast. I want to share one of the daily routines that highlights the absurdity of life with a leak. Keep in mind, these experiences are my own and are probably quite different from what many other people with spinal CSF leaks have experienced.

--My Coffee Routine--

Coffee was extremely effective in treating the symptoms of my CSF leak, namely the head pain. My dependence on coffee went far beyond a caffeine addiction you would find “in the wild” - I was completely reliant on a cup of coffee to function at even the lowest level.

I spent my first summer with a spinal CSF leak (completely unaware that it was a leak as I mentioned before) working as an engineering intern. I filled the role of a very junior programmer, and my job was to sit and stare at a screen for 8 hours a day while translating the occasional burst of genius into a line of code.

In case the sarcasm does not translate, I’d like to clarify that at this time and perhaps forever on, I wrote terrible code.

To get to this job I had to participate in the morning commute™, driving from a hotel to the office. The most daunting task in this commute as a leak patient, was of course, getting out of bed.

Every morning I would stand up. Well, some mornings I couldn’t - the nerve pain secondary to the injury I suffered during the lumbar puncture sometimes meant I couldn’t move my legs until after taking my first round of gabapentin. But, for the sake of the story, imagine this was a morning when I could stand. In that scenario, I would pop out of bed and stand up to greet the morning. It was bliss every single time - I remembered nothing of the days before, and knew nothing of the days ahead.

A handful of seconds later the head pain would hit me in the back of the head. I’ll be honest - I don’t remember what it felt like. I do, however, remember how I described it: like getting hit in the back of the head with a bat. I would lower myself to the floor and then crawl to the kitchen, which was thankfully very close by in my budget hotel suite. I would make coffee. I would drink that coffee. I would then ease myself up onto my feet.

This ritual repeated, day in and day out, for months. During the day, I would always have a cup of coffee with me - anything to dull the pain that grew between each cup.

By another year or so after that, my routine had changed. I was then living in a suite in college with my friends. Every morning I’d wake up and stand up just as I described before. The bat would hit me, but by this point in my leak journey it wouldn’t knock me down. The pain was less severe.

The real struggle then was the trip to the nearby campus convenience store to buy a large iced coffee. It was quite the challenging game - can I make it to buy coffee and get back to my apartment before I need to throw up from the head pain? I will spare the details, but I’m proud to say I always won… more or less.

---

I functioned with a leak, but just barely. I retreated from everything - every extra ounce of effort - to focus on the one thing that I decided mattered to me: school. I’m thankful that now I have the extra bandwidth to take on challenges beyond what I consider my core values, and do so without crippling pain. I hope that my somewhat humorous yet very true-to-life recounting of my caffeine routine illustrates the absurdity of life with a leak, and the kinds of unseen changes and challenges people go through just to live.

596 - 177 = 419

Update #2 (6/1):

We've reached the midpoint of duradash®! I've also just reached the halfway point to my goal of 1303 minutes of walking! I spent this weekend going on a few walks - some just around my neighborhood to take care of errands and enjoy the on and off nice weather, and one hike on Sugarloaf Mountain in Maryland. All together, I walked for 314 minutes. 

In general, I feel pretty good after all that walking. My head throbbed after the hike - exerting myself on uphill stretches and the frequent impacts on unsteady ground are probably the cause. On top of that, my body is still aching from the huge walk I started with last weekend, though that's more of a typical pain than the head pain. Perhaps it was unwise to start with 18 miles on pavement, but oh well, I have never been known for my talents in moderation.

In fact, I have a tendecy towards obsession. Of course this serves me well in a circumstance like this where I need to do one thing for a really long time (walking), but it weighs me down in many other facets of life. Reflecting on my experiences as a patient, what comes to mind most when thinking of obsession is my personal "research" into my condition and the doubt that grew along with it. I actually spent almost every single day out of the 1303 days doubting that I had a spinal CSF leak. I certainly felt that there was something wrong, and throgh copious self-destructive internet sleuthing I had learned about CSF leaks, but after many, many appointments, I had been convinced it was ruled out. It took a very persistent neurologist in Philadelphia (and numerous invasive procedures) to turn me back around and show me that I was, in fact, leaking.

My point is that my obsession of choice during most of my sickest years was self-doubt. I find that I'm an expert in convincing myself of untruths - either that I'm sick when I'm not (health anxiety), or that I'm not sick when I am. Strangely enough, every time there has been something seriously wrong with me I have shrugged it off as something normal!

Now that I live with these "echo" symptoms years after the surgery that fixed my leak - head pain on exertion, vision changes, and so on, I find that self-doubt creeps back in. I doubt that I've remained sealed, or I doubt that I'm even feeling those symptoms and think it's psychosomatic. 

Every now and then over the past few years since surgery I've "cried wolf" and gone for imaging and appointments, always to find that there is no evidence of continued leak. I certainly don't intend to participate in invasive imaging (CT myelography, or any of its cousins) unless things become precipitously worse. And yet, despite this obsessive self-doubt, I get to keep going - I go to work; I go on hikes; I step outside of my door spontaneously (against which Bilbo warned in my last update); I choose to sit upright when reading, or, when I feel like it, I choose to lie down; I schedule my day around my responsibilities and my wants, not my pain; I exercise because I want to, not because I have to; I stand up out of a chair and feel my head throb and then, despite it, continue moving. I may not be able to see the forest through the trees, so to speak, when I'm in the depths of self-doubt, but even from those depths I can see that I live a "normal" life now, if such a thing even exists. Maybe I do have some residual issues related to my original leak. Maybe I don't. My self-doubt is pervasive, but I can choose to accept my circumstances and live. That's my goal with walking - I feel these "echoes" and I feel this doubt, but that is not something I can control. All I can do is keep moving!

Another Lord of the Rings quote for you - this time Gandalf to Frodo in response to Frodo's lamentations about such evil occuring in his time:

"So do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given us."

I still have tomorrow off to do more walking before going back to work!

910 - 314 = 596

Update #1 (5/25):

My first walk was a resounding success - I walked 18 miles over 393 minutes! I started in Alexandria, VA and walked into DC and then continued across the city to Bethesda. My legs and feet are sore and thankfully that's it - a sign of the progress that I've made over the past few years. Even short walks used to leave me in bed with terrible head pain. The head pain I encountered during this walk was due to exertion - one of the many mild symptoms I live with today. Unlike the leak head pain, this symptom responds well to OTC medication.

Today, I have a lot of chores to catch up on including a planned quick trip to the gym. It's a tremendous feeling that after a really challenging day I can get right back up the next day and keep moving (albeit, with typical, non-leak post-exercise pain and soreness). This is something I cannot take for granted at all - freedom to move at will, without a plan. Living with a leak was completely limiting, and I planned every aspect of my day around how my symptoms would be. I always had an "out" to withdraw and lie down.

Of course, I still live with symptoms, mild as they are. I picture them as echoes of what burdened me before. Perhaps they're signs of the damage that was done. Nevertheless, now I can venture out into the world and appreciate the progress I've made, pursuing adventure along the way.

I will end with a quote from Tolkien's The Fellowship of the Ring:
"It's a dangerous business... going out of your door. You step into the road, and if you don't keep your feet, there is no knowing where you might be swept off to."

1303 - 393 = 910 minutes to go!

Original Post:

I’m thrilled to be participating in duradash® 2025, an annual fundraising event for the Spinal CSF Leak Foundation. This year’s virtual fundraiser will run from May 25–June 7, 2025. The duradash® event aims to raise awareness and funds in support of spinal CSF leak research and education, so that more patients living with this under-diagnosed and disabling neurologic disorder are able to receive correct and timely diagnosis and treatment.

The virtual challenge aims for a total of 150 minutes of any activity, to be done at any time, anywhere. The theme is to "start where you are" - to meet people at their current level of ability and encouraging activity meaningful for the individual.

My activity this year is walking. I will walk for at least 1303 minutes during the course of duradash®, 1 minute for every day I lived with an unresolved spinal CSF leak.

My Story:

I lived with a spinal CSF leak for 1303 days. For most of that time, I had no idea what was happening to me, much like many of the other people with leaks in this community. I went through dozens of appointments, MRIs, CTs, and invasive procedures - a path that is known very well to patients like me. I took medication after medication to treat the plethora of neurological symptoms from ear popping to vision changes to, of course, head pain. I studied with a leak, graduated with a leak, and I started my first job after college with a leak. It was the single focus of my life for those 1303 days.

Finally, my dural tear was repaired through surgery. I felt no relief in symptoms after the intervention, and only over time have I noticed a gradual fading of the pain. Since that time, I have found a love for hiking and exploring despite my ongoing echoes of the previously debilitating symptoms. I've been fortunate enough to go backpacking in national parks and visit the Faroe Islands and Iceland. That's why I choose to walk for my challenge - walking is my reclamation of freedom and mobility.

How to Help:

• Donate: Contribute whatever you can. No amount is too small!
• Spread the Word: Share my fundraising page with your friends, family, and social networks. Let’s spread awareness so we can raise more!
• Stay Engaged: Check back periodically for updates on my progress to my activity goal! Share my accomplishment far and wide!

Thank you for standing by me in this effort. Your support means the world to me!