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tule mat

Tule mat I just made, even though it hurt like hell!

Hi There! You haven’t heard from me in awhile. That is because I’ve been busy getting my Master’s Degree in Counseling Psychology . Now I’m done. You may have noticed a change in the subtitle of my blog: I decided to add Chronic Fatigue Syndrome (CFS) to the list of topics. Over the years I’ve written about my health here and there, but I’ve recently come to the decision to incorporate more writings about Chronic Fatigue Syndrome into my general repertoire. A lot of this comes as a direct result of my academic studies. One reason is that I feel it is important to advocate for the disease itself, which is grossly misunderstood and something most people simply don’t know much about. Labels can help and labels can harm. The name Chronic Fatigue Symdrome itself is problematic, as it lacks gravity, and comphrensiveness. Fatigue is only one of numerous symptoms.  Nevertheless, for me it has helped tremendously. People categorize things. It is how they communicate. It took me 10 years to accept this label, and my decision to become diagnosed was a deliberate one, and I now bear it with pride.

I’ve spent so much time experimenting with different treatments, that I often thought of creating a second blog, something like trackerofhealth, but decided against it because although it helps to express feelings and organize thoughts, dwelling excessively on the subject can be painful, to make a whole site about it would be a big commitment. So duh, why not combine the two which is a more authentic representation of my life to begin with!

I hope I can be a positive role model  (even though I may sometimes have “dark” thoughts on the subject) for other people with CFS, connecting them with my wildish interests, and for other rewilders suffering invisible, chronic, stigmatized disease who feel alienated from the community at large. The primitive skills scene, and most other DIY scenes, though they pride themselves on providing alternatives to modern society have a long way to go in becoming more accessible to people with disabilities, and I hope to make inroads into changing this. The American ethics of hard work, rugged individualism, and materialism are still very much evident in our attempts to break away.

I envision starting with something simple, support group workshops,  moving up to perhaps a horse packing trip for women with fibromyalgia, up to a whole civilization rehabilitation center for learning and healing (hopefully I will find a healthy, energetic partner to help with this!). Many internships, gatherings, and wilderness programs are  unsuited to people like myself who cannot carry a pack, eat a starvation diet (or a pasta and oatmeal based diet for that matter), or work 10 hour days 7 days a week. Pioneer heros, TV shows, and even Tom Brown Jr. stories can glorify the single-man survival style. For some people this is just not as possible and practical as it is for others. On a philisophical level I believe our culture will continue to create outliers who force us to acknowledge such problems, until a better balance between individualism and communalism can be struck. When marginalized people can’t “pull their own weight”, we must examine what weights they ARE pulling and why. What burdens and wisdom are they holding for the rest of us?

Bengay

A girl's best friend.

In the field of wilderness therapy most existing programs, though communal, are oriented toward backpacking and short term survival rather than long-term, hedonistically cushy  simple living, which is what many of us rewilding types are all about anyway. While this may be appropriate for rebellious teenagers who thrive on stretching their comfort zone and testing their abilities, it is not neccesarily appropriate for those who have been “broken” by this world, those who have already undergone underworld initiation by any number of difficult and traumatic experiences and need or desire slightly more accomodating accomodations. I already know I can walk 30 miles in a day even with my condition, because I’ve done it, but that doesn’t mean its a good idea. I’ve got nothing to prove to myself.

The world of primitive skills gatherings is also highly communal, but in this craft-based culture a person is often evaluated by what they can produce, or can teach other people to produce. It seems to be less satisfying when, for example, you don’t make a hand drill fire all by yourself. But should it? When friends visit my house, they look at my things and ask, “Did you make this?” And who wouldn’t? That’s what people do. But if I, not even trade for, but just plain buy my hides, or pack basket, or a bow and NEVER make one, am I going to be viewed as less authentic? I don’t know. I hope not. What I do know is that because of my pain, it is difficult for me to complete most crafts, some like hide tanning require physical endurance and a certain measure of strength, but perhaps even worse for me are those that require sitting on the ground and engaging in hours of small repetitive hand motions such as loom weaving, basketry, and beading. I’d rather dig ditches any day. Admittedly, most all of the projects I have ever completed have been under the influence of drugs or alcohol.

chronic fatigue syndrome

Another reason I am choosing to write about this topic is to give those around me a greater understanding of who I am personally. I am very independent and stubbornly capable of just about everything a normal person is capable of…for a short time. I am tanned, toned, and let’s face it, sexy as hell. I smile and laugh (though I never feel it in my core). I run and dance (though my joints ache, and I get nauseous if I stay up late). I travel alone and lift my 70lb tipi canvas onto its frame. I may come off as shy and skittish, doe-like. I am. People see that, but because of these other things most people don’t know I’m quite ill, and even those who know me well don’t understand the extent of it. You cannot judge the health of a person with chronic disease based on what they do, as this does not take into account the strength of their will, nor can you judge based on what they say, since you have no idea how accurately they are portraying their condition in proportion to the amount of suffering they are experiencing. I would hazard a guess that a good number of people who are accused of negative thinking, actually spend a good deal of time hiding, or skimming over unsavory details as it is not socially appropriate to continually answer the question “How are you?” with “Fucking terrible, and yourself?”

A note to people reading this: You may be tempted to offer helpful medical advice and suggestions. Thank you. Don’t. Almost all people with chronic disease suffer from an overload of “maybe you just need to…”. Most likely they have internalized these messages about what is wrong with them and now feel that they can’t do anything right, can’t eat right, can’t sleep right, can’t exercise right. I have not given up. I am currently undergoing treatment. If you have an herb or supplement I just need to try, I will give you my mailing address and you can send it to me, because I am not buying anything else, nope, not even digging it up. Same with services. You want to come to my house and give me a massage? Sweet. If you want to offer words the best thing to say is something like, “That sucks. I’m sorry to hear you are having such a hard time. Let me know if you want to talk about it more.” If you would genuinely like to help, this is going to take offering real energy, not just ideas. My favorite thing is food and one thing I have a hard time with is feeding myself. Making me food is the number one best thing you can do for me. Contributing energy to helping me finish projects is the next best thing. Cognitive issues like concentration and motivation are huge with this illness so just having someone around helps keep me on task even if I end up doing most of the work myself.

Side effects of chronic fatigue syndrome often include pillow hugging, making frowny faces, and looking hot:

chronic fatigue syndrome chronic fatigue syndromechronic fatigue syndrome

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As you may well know I’ve had a difficult time adjusting to life in the Pacific Northwest, but I’ve taken to biking and running alone in whatever scraps of nature I can find and I’ve come to believe in the last few days that it’s not so much Pennsylvania I miss as the outdoors in general. Since my arrival here I have been suffering from severe nature deficit disorder. Scout and I have gone out to the woods on only a handful of occasions whereas I used to go hiking, harvesting, exploring, or be working on some primitive project, in the winter, let’s say once a week, and nearly every day in the spring and summer. There wasn’t really anything else to do. But it’s not Urban Scout’s fault, I haven’t even desired to work on primitive skills or learn about nature since I got here. The city seems to take that desire and suffocate it, overwhelming you with other stimuli, making it impossible to concentrate. On the other end of the spectrum, times back east when I went camping in the woods for days or weeks on end I found the desire to learn skills and pay attention to nature infinitely easier than even in my country home. It was impossible not to know the phase of the moon, or the direction the wind was blowing, or wonder what kind of frog makes that noise. I’ve come to believe that if you have to make yourself pay attention to these things, making a concentrated effort to go outside and record them in your little journal, there’s something very wrong with the way you are living.

As I said in comments on my last blog, I understand why people raised in the city would not feel the soul-crushing horror that I do living in the city, how it’s “good” for them in the same way my sugary comfort food is “good” for me, but in the end I simply find it incongruous with the values of rewilding. Yes, it is possible to connect with nature on a deep level while living in the city, but it isn’t easy. You’re working against the grain as well as exposing yourself to (more) toxic air, water, noise pollution, light pollution, electromagnetic fields, and crime. Cities, as the epitome of civilization, are irredeemable in my eyes, and like the Ring of Power they corrupt all those who come near. (Note: I’m not really a nerd. I’ve only even seen one of the LOTR movies.)

In these primitive circles I often hear community being valued over nature because “people are social animals”. Those who wish to run away from it all and move to the wilderness are ostracized and ridiculed as not getting what rewilding is all about. I can’t disagree with this viewpoint enough. For one, the person who runs away to live in the woods, generally does not want to be alone at all, but is forced to be alone because the abusive and hypnotic nature of the city has his friends and family ensnared in its ugly tentacles. Secondly, it’s a limited point of view that includes only humans in the definition of community. Nothing underscores my point more clearly than what happened yesterday. We went to harvest wapato, an important and much talked about native food for the region. Many of my friends in Portland have been espousing these anti-civilizational values for the last10 years, yet we went to a location based not on firsthand experience of harvesting wapato before or seeing wapato growing there but by following someone else’s directions. Needless to say we barely found any wapato. I find this sort of incident completely unforgiveable. You can’t rewild philosophically without a sound knowledge of place and you can’t rewild physically without a community. So city people shut up, get outside, and walk your talk, and country people stop whining about how lonely you are and start reaching out to whoever (person, plant, or animal) you can find. We need both.

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I know I just said to burn the libraries, but I’ve got to recommend this new book, As the World Burns: 50 Simple Things You Can Do to Stay in Denial a graphic novel by Derrick Jensen and Stephanie McMillen. It’s AWESOME! You’ll laugh, you’ll cry, you’ll…get really angry. I confess sometimes (once a year or so) I wonder if I’m wrong about this whole civilization thing because how can I (and my small group of compatriots) be the only ones who clearly see what’s going on. Maybe there is some point to it. Maybe it is all part of some cosmic plan and the year 2012 will usher humanity into a “planetary transformation, a massive shift in human consciousness, and the movement into a new realization of being on the Earth.”(1) Heck, maybe that plan will even include a new and improved civilization.

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I’ve been struggling with my physical and mental health for many years now. The troubles began my freshman year of college and have never gone away. Without going into too personal of detail let’s just say they include:

-depression/anxiety
-fatigue
-chronic back and neck pain
-urinary tract infections
-sexual dysfunction

The severity of my symptoms has gone up and down over the years. At my worst I felt as if I was running a constant low grade fever and was unable to stand up or walk around for more than a few hours before having to lie down and recoup. When I first started experiencing these troubles and found that the medical establishment wasn’t willing to do anything except shower me with handfuls of free antidepressant samples, I did a ton of research into natural medicine and of course ran into complex and contradictory dietary information. For some reason I don’t recall I decided to go with the raw food diet. I followed this diet with varying consistency for about a year and a half. It did help, but not enough to be worth the difficulty and social alienation.

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