On Motivations

So how did I end up here? Why the walk? Why hidradenitis? I’m not going to paint a rosier picture of myself than I believe is accurate…

I’ve always had trouble sticking with one thing. I’m never satisfied with the status quo. I don’t think I deserve any better than the status quo, but I have an unquenchable thirst for something more. My resume is a long list of very different things, but all of them were short lived. When I did them, more often than not I did them well – I just never did them for very long.

I think on a personal level I am a very dependable person in many ways. People knowing what I am going to do next is not one of those ways. I don’t say that from a point of ego; I don’t think it is necessarily a good thing. People like to romanticize unpredictability. The problem is, I myself don’t know what I am going to do next either. I feel pretty lost most of the time. It’s not a great feeling.

Walking Across America

So why walk the beast? I put it to a friend of mine like this recently… You ever get mad, sad, or confused and decide to go on a long walk to sort things out? It’s kind of like that, but a really, really, long walk to sort a whole lot of things out.

There is absolutely nothing wrong with walking for yourself. Not everyone has to walk for some external cause, trying to venture forward for a charitable effort. There is nothing wrong with just dropping everything and walking away to find your answers, walking just for yourself and yourself alone. I don’t think it’s selfish.

Maybe you just want to have an adventure. Go for it. No reason to make it complicated. Walking across the country hardly ever births from a want though, I think it comes from a need. I don’t think it is some kind of lazy escape for those frightened of “real world” responsibility. I think people reach a natural boiling point and just find themselves having to walk.

If you need to take some time off to find yourself and battle your demons, do it. It’s probably the most important priority you have. There is a reason flight attendants advise you to secure your oxygen mask before trying to help others. My parents deserve better than a broken son, my siblings deserve better than a broken brother, and my friends deserve better than a broken friend. I know being a broken husband, father, worker or business owner isn’t what I want in my future, so I need to secure my oxygen mask first. You don’t try to fix a machine with a broken wrench. If you need to find yourself, if you are lost, go do it. It’s not selfish.

That being said, due to the specific circumstances of my own life, I have never felt more selfish. I knew I had to attach some meaning to this walk beyond myself. Not everyone has to, and that’s fine, but me specifically – I had to as part of my growth. It has to be different for me because I feel like I have been very selfish in my life and I am trying to atone.

Walking for Hidradenitis Suppurativa

I hardly ever go to the doctor. I find myself between so many jobs that I rarely find myself with health insurance. I had basically been crawling the internet since I was twelve looking for information on what might be wrong with me. I knew it wasn’t contagious, I knew it wasn’t an STD. I stumbled upon Hidradenitis and everything matched up. I finally got around to going to the doctor in 2010 and got an official diagnosis. He said without a doubt, that’s what it was. Until that moment, it wasn’t real. In the back of my mind there always lingered a thought: It could just be some strange horrible acne. But now… it was real. Now I knew what I had was an incurable, progressive disease, that tends to worsen over time. I was crushed.

Leading up to that last paragraph, I had before been talking about not wanting to walk for just myself. So wouldn’t my motivations be selfish if I decided to walk for HS? The thought crossed my mind. I thought, people will think that the only reason I care about HS is because I have it. People will think I am just trying to find a cure for myself. I thought, perhaps I should walk for something else. I had an ex whose nephew has CF. That always touched my heart. My niece has eczema and severe food allergies, maybe I could walk for that? I have grandparents who have had heart disease, emphysema, and cancer. Maybe walk for them? What can I do that is the most selfless?

Then I thought, it’s not just about selflessness for the sake of selflessness, it’s about using what value I have to help others. Where can I do the most good with my own experience, that specific experience value that is unique to me? What makes us love each other is what we share with other people. Sure, I love every one of those people I mentioned that have those other ailments, with all my heart, and I empathize with them, but I know there is a struggle out there with HS that I can empathize with all the way to the core on a knowing and personal level.

This isn’t about comparing one persons disease to another. This is about sharing. People I can turn to and say, I understand, and if I don’t now, I will soon as my condition worsens. When I tell someone I understand, they need to know it’s true or that it will be true someday. That somehow I am in the same boat as them and know what it feels like to have the water pooling around my feet.

So my fellow people with HS, I am walking for you. I am walking for me, but for you too.

Walking for Everyone

Beyond funding and friendships I know the act of the walk itself doesn’t do much good for anyone else. I am just walking. I can walk all day and no matter how far I walk you as an individual will still have your everyday struggles. I don’t want to glorify something mundane. I’m just walking. But I know that I personally grew inspired and was able to reflect inward just by watching and reading about the travels of Nate Damm, Andrew Forsthoefel, Logan Mayberry, and many others that have done this before me and are doing it now. I hope my walk will do the same for others.

Through this walk, for myself I am gifting personal growth. I hope to mentally, physically, and spiritually come out the other end of this a better person. The person the people I know deserve to know.

Through this walk, for those with HS, I hope to bring funding for more research and better treatments, to spread awareness of this disease, and to develop new and unbreakable friendships through our common struggle.

Through this walk I hope to inspire others to get up and adventure, say no to the status quo, and reach out and make new friendships. Whether you or someone you know has HS, eczema, CF, cancer, lung disease, heart disease, or any other physical, mental, or spiritual struggle. If you or someone you know is just going through a hard time, a struggle that can’t be assigned to any particular category, but are just under the burden of life – I am walking for you too.

Angie, Nico, and Red XIII

Today is a good day. I was prepared to wait for my returned sike trailer to make it back to Amazon before having to wait an additional three days to get credited back my money. I would then have had to order another more expensive bike trailer and go through the process all over again. Finding something that will do the job and is inexpensive is pretty tough when it comes to bike trailers, so I wasn’t looking forward to it.

My father, always trying to be of help, suggested taking another look at Craigslist. I was skeptical, telling him I had already peeled over Craigslist a lot recently and nothing good was available. Luckily he didn’t listen to me and began his search anyway. Sure enough, a decent looking bike trailer shows up for sale in our area, not far off at all. It was a good price and was already assembled. It was brand new. The owners just didn’t need one so big. Good thing for them, I definitely needed something big enough to haul my stuff in.

When we arrived at Angie’s house, we pulled up in our huge handicap bus. She laughed and told us she was glad we brought it because she was worried we would pull up with a car that wouldn’t be big enough to load the bike trailer. She was really cool, I immediately liked her. We walked up into her garage, bringing my chihuahua Marty with us. For those of you that don’t know Marty, he is the chillest, mellowest, chihuahua ever.

Angie, of course, thought the trailer would be used for Marty. That would make sense, it is a pet trailer and I arrived to check it out with my pet in tow. I explained to her that I was walking across the country for Hidradenitis Suppurativa awareness and that Marty wouldn’t be going, rather I would be using the trailer to haul my supplies. She thought it was a great idea and was delighted that she would get to watch her trailer get put to good use.

Angie had a sweet little yorkie mix (I think) named Nico. Super adorable dog. Him and Marty friskily checked each other out, sniffing each other in circles. At one point Marty gave a little growl because he hasn’t had canine company in a little while so he was a little surprised. In the end they became doggy friends. They had a little time to bond while I walked around Angie’s neighborhood testing the trailer.

I ended up getting it. I didn’t expect to have a trailer today, so it was really an unexpected and welcome direction for things to go in.  I snapped a quick pic outside with it. I plan on having a White Walker and a Storm Trooper ride with me the whole way. Going to try to get a tiny American flag to put in the White Walker’s hand. Maybe strap a little sign around his neck that says “Winter is Coming.”

Thanks, Dad for helping me find this trailer! Thanks Angie for listing it and being so friendly. Thanks Nico for making Marty’s day. Thanks Momma for taking Marty to the park with me and taking Red XIII on a test run.

 

My Brand New Sike Trailer

Nope, that’s not a typo. I got psyched up for this new bike trailer then it siked me out. Today was a roller coaster of emotions. I’ve been waiting for the better part of a week for my bike trailer to come in so I could assemble it, pack it, put it through a test run, and gauge any changes or preparations I need to make. It’s the one element that has been standing between me and a proper walking and camping trial out here in Louisville, Kentucky.

Three or four days later than it was supposed to arrive, I get this box left at my door. It looks like a t-rex got hold of it. There were so many holes in the box I got to preview the item before even opening it. Once I did open it I find that not only is the bike trailer the wrong color, but it’s structure is pretty damaged as well. Now, there is just about nothing I hate more than dealing with returning items and dealing with vendors, shippers, and manufacturers, so I decide, what the hey, I’m okay with blue and as long as this damage doesn’t keep me from using the trailer this will be just fine.

After an hour or two trying to put it together, its badly translated instruction manual offering little help, I finally get it in presentable and near functional form. I am pleased. I feel relief. Finally, the largest piece of my puzzle is in place and I can begin the final stages of fleshing out this trip across America. I know I want to keep everyone updated on my walk, so I get a picture of me taken with the bike trailer outside before airing up the tires.

Sike. I don’t have good tires. One is off alignment and the other is damaged so bad from shipping that it can’t be aired.

So, alright. I’m not sure what to do next. I think maybe I will get credit back from Amazon, ship it back tomorrow, and get myself something else off their store. If anybody has any tips on a great trailer, drop me a line!

Update: UPS should be picking up the trailer today. I’ll get Amazon credit back three days after they receive the bike trailer. I am thinking of getting a Schwinn trailer. I’ve always loved their bikes.

Friends in All Places

So since going public with my trip over the last day or so, I have encountered the kindest and coolest bunch of people from all over the nation (and beyond). Throughout the Hidradenitis Suppurativa community I have had people come forward already offering to meet up with me, to donate to me and help me with supplies, to give me a place to sleep and eat in their homes, and even people offering to walk part of the way with me.

The reception and support I’ve already been offered this soon, my feet not even hitting the pavement yet, is super touching. I just really want to take a moment to thank all of you. You all are awesome!

GoFundMe launched!

The default title for the first post of this WordPress template was, of course, as is customary on the internet: “Hello world!”. I was tempted to leave it because it fit so well – seeing as I’m writing to you, the people of the world, and also planning to venture out into the world itself. After no more than a minute I decided to take it down so nobody would casually glance the site mistaking it for unfinished.

To the news: Today I launched the GoFundMe.com campaign of Walk For HS! Or, earlier this morning rather, at roughly 3 AM, I groggily finished its rough draft. I wasn’t aware the campaign would go live during the editing process; I thought I would be able to edit it privately until hitting some kind of finished button. So, apologies for any blobbiness.

If you are reading this close to its time of posting, you are probably a member of one of the Hidradenitis Suppurativa Facebook support groups. I want to thank you for dropping in. Please check out my GoFundMe page if you haven’t already. It’s going to be pretty hard without your help.

What will be hard? This insane idea of walking across America. Sure, other people have done it and are doing it now, but it doesn’t make it any more sane. There is an element of danger to it, primarily from cars and trucks barreling down the road, but I think if handled properly it could be fairly safe otherwise and, hopefully, loads of fun.

There are three types of transcontinental walkers: Those who hike the wilderness across, those who take roads, and those who do a little of both. I’m in the second group. I have a deep and perhaps irrational fear of bears. This fear keeps me from camping too deep into the forests or mountains by myself.

Just last night I braved the jungle that is my backyard. My sleep gear had arrived in the mail a couple days ago and I needed to give it a test run out in nature. As I walked out my backdoor with my things I noticed some nasty spiders spinning some webs near where my head passed. I told myself, You’re going to get a few of those directly to the face when looking for camping spots, get used to it.

Anyway, can’t wait to get started!