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?
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.
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:
“It is no measure of health to be well adjusted to a profoundly sick society”.
-Jiddu Krishnamurti
Hi Emily, what a beautiful, authentic post! I assist in building a new garden in Brooklyn, NY love all the detailed plant info on your blog which I recently found last month, and have started recommending as reading material for new gardeners here. Your videos on wild carrots and nettles have been my favorites.
You’re coming out and explaining your condition takes courage and Authenticity and truth really come through. It sounds like your really accepting this in yourself and willing to accept all comforts and kindnesses from friends. If I lived on the west coast I’d certainly cook you a good meal, in lieu accept my wishes for perseverance and renewed health in good time!
Emily, I am so impressed with the thought and effort that you put into this… It’s the first and best attempt I’ve read of anyone attempting to be authentic and frankly honest about chronic disease that isn’t necessarily visible. I hope to gain strength by your example, in being frank about my own issues. Congrats on your latest degree…
wow, what a courageous and refreshing post (refreshing in showing your vulnerability and honesty). i was diagnosed with a mild case of CFS and can so completely relate to what you say about feeling left out of participating in various courses. there is such an emphasis in this culture, even in various alternative realms on “doing it all” and testing oneself to some ultimate standard set by some superwoman or superman. i’m struggling with words here, not nearly so eloquent as you are, but hopefully i’m getting my point across!
i’ve hesitated to attach the label to myself (partly due to it being one diagnosis from one naturopathic dr, and it may “just” be adrenal fatigue), but this is primarily due to the stigma attached to “having” a chronic disease. i so love your idea of being a strong role model for those of us with CFS or other chronic diseases. i think it is easy to fall into a victim mode when one is sick and just stay in that mentality. i’ve gone into that myself more often than i care too admit, feeling sorry for myself and all that.
you go girl!!!
I think I have this thing too… Have thought it for a while but have no insurance or anything to be “diagnosed” pain and tired all the time… would love to talk about it with you and gain some insight.
-Tony
Hey Emily, thank you for writing this. I have all but given up on primitive skills because of the pain I feel in my body when I work on hides or other hand work. Thank you, thank you, thank you for giving me some words to the experiences I have had in the last couple of years. It gives me hope that I can address my issues and at least accept myself as I am rather than thinking I just suck and am hopelessly addicted to the civilized world to which I have been conditioned. I find myself in tears remembering the pain and cognitive confusion of my last 13 years (at least).
It is my hope and prayer that you experience relief and healing. I hope to see you soon.
[...] Great post. I strongly resonate. She talks about including her issues with Chronic Fatigue Syndrome in her blog about primitive skills. 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. [...]
Emily, I’m glad I decided to get on your blog and read this new post, today. Wow. Thank you for sharing.
I’ve started a blog, of sorts. It’s tiny so far, but I want to exand it and begin incorporating more. I’ve linked your blog to mine, as well.
I love you.
Jes
http://messicajealy.wordpress.com/ its still a baby
My friend directed my to your Chronic Fatigue Article – it’s related to a conversation he and I had earlier in the day. Thank you. I think the points you are making or hinting at in terms of the lack of true acceptance and community-mindedness are very appropriate. The patterns of competitiveness and self-centeredness follow us everywhere, even into the re-wilding world. I think there is not enough emphasis on healing them.
This is appropriate to my life right now because I think about the ways in which I don’t have adequate strengths/skills/confidence sometimes, and get frustrated. Perhaps to expect 100% out of myself 100% of the time is not the best!
My friend also said:
“Be careful! Don’t look at the pictures of that girl. You will fall in internet love.
I can see where he is coming from
Well said. I have been sick a few times with long enough durations that I wasn’t sure if I was permanently damaged or recovering slowly. The ordeals were each long enough that they left impressions where I can empathize with people who don’t get better. A long staph infection of 3 months, about 9 month Lyme., 6 month massive rodent dust inhalation sickness. All having extreme fatigue and the last two with extreme neurological effects, body pains. Now if I imagine people Or think of friends who whose disease doesn’t get better I just feel a deep sadness that is calm?, because I can understand enough without being dumb about it. I especially resonate about the parts with friends or whomever not understanding and even making quite insensitive statements, good friends where I have set them straight with rebuttals: it’s like telling a rape victim they created their own reality and get over it. That usually gets the point across, because it kinda felt like that. Being accosted in my own body. And then there were the periods where I felt really empowered, usually accompanying feeling better; even alittle. Thanx for sharing.
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