Interviews with IcaristasSubmitted by scatter on Wed, 08/29/2012 - 3:07pm
In celebration of our 10th anniversary we are going to reprint a bunch of the interviews she's already done, and for anyone who's interested in being interviewed over email yourself, get in touch with her
Below are interviews with Anonymous and Ming
Anonymous is someone I met through the Icarus Project, and we've become friends through support calls, support chats, and the mail. They live in Pittsburgh, and I hope we'll get to meet someday. I admire Anonymous for their amazing writing skills and magical support of friends.
What is your madness like? Has it changed, over the years?
Its always been an undercurrent, and sometimes the tide gets stronger and becomes an overtone. During seasonal shifts, relationship changes, major life changes - it can be really intense, but its not a rule of thumb. It seems to follow its own path.
When I was younger, I went through alot of the initial trauma that later compounded and shaped who I am today. Back then I was pretty repressed, oppressed, and tightly wound and the madness wasnt really characterstic of me like it is now. At some point in my teen years I began to unravel and its been ten years of that. What once looked more like ocd, mania, psycosis, anxiety - has morphed into more depression, paralysis, catharsis - as I have aged. Madness seems to have its own growth/maturation process. Also, my original diagnosis was bipolar. Because I was still under traumatizing circumstances, it hadnt become post traumatic stress disorder yet - more like current traumatic stress disorder, but it undoubtedly was etched into me and when the environment changed and the chaos and dust settled a bit you could just see these big huge psycological scars all over me in my body language and the way i interacted with the world. Now my PTSD and my mania periodically get together like an old band reuniting- and thrash around and give me some creative energy, emotional torment, and add some sting to my days, but for the most part, its background noise.
How have you been involved with Icarus? How did you first get involved?
Well, there was a well known woman named Sera in the activist community who had jumped off a bridge one day. I lived in philly at the time of her death - and some of my aqquaintances and even a housemate was good friends with her - so I was peripherally connected. Aesthetically we looked the same and had the same lifestyle - traveling, hoboing and all that. I even bombed a big wall with some artwork dedicated to her when I heard the story. Sasha started writing and doing outreach as a response to her suicide and met Jacks - and they had a zine that one of my traveling buddies gave me. It was alot to take in and I was still in denial. It wouldnt be until years later that I would be willing to fully admit how much I related, as my madness unfolded. I stumbled across the forums about five years later and my involvement ebbed and flowed, and I got involved more intensely each time until I started a local group, and then helped start some facilitated phone and chat support meetings, swap threads, a queer subforum etc. Its been amazing - and Ive learned so much from other Icaristas. Its been a treasure box of support and resources. Theres some snakes sometimes but overall its been incredible.
What does mad love mean to you?
I think in its essence its just solidarity with mad kin, totally void of judgement and fear. It means if your in crisis or need a little support no matter how messed up and frothy you look and sound - I will be there in a brotherly kind of way and not hold it against you - and vice versa.
How do you take care of yourself?
I say no often. Self preservation is important, and theres always opportunities to self destruct - quickly or slowly - out there, with people, places and things. I have a list of things I have to do each day, routines/habits - like reading, bathing, and blogging before bed. Walking in the wee morning, singing in the afternoon, working out, intellectual stimulation/independant research projects, guitar,vitamins. If its not on the list, I forget - I get mired in my old bad habits, which I do without thinking. Self Care is like pushing this big giant cog, trying to get enough momentum so the gears engage and eventually the whole thing moves on its own and propells itself. And in due time, it does, it gets easier. All my action items for the day are fitted in to meet a need so I dont end up trying to meet that need in a destructive way.
What advice do you have for anyone on a mad journey?
Take things a day at a time. If thats too much, focus on what you need and can accomplish in an hour, or five minutes - thats most important, to you. It might be to curl up in a ball and cry or take a train downtown. Always stop to smell the roses - you can never do that too much. Remember that theres light at the end of the tunnel, but there will be many tunnels. Stay open even if it means risking getting your heart smashed some more, dont worry - those things can take a beating. And everything in moderation, even moderation.
Ming is someone I met at a mutual friend's birthday party one year ago. He learned on facebook that I'm involved with the Icarus Project and talked to me a little about his narcolepsy. He comes from Berkeley and lives in Sacramento, where we've become good friends, and we attended Sacred Peace Walk 2012 together. He's involved with permaculture, community gardening, CouchSurfing, bicycling, and other activism. I admire him for his authenticity and listening skills and the way he helps the world.
What is your narcolepsy like? How does it impact your life?
I don't know what would be a not-narcolepsy life except more awake. Narcolepsy seems to have an impact on my life because it seems as I get more tired it's hard to separate imagery from my dreams vs imagery from what's happened in a real waking life. And of course if I was blogging about this, I'd be putting in a link to hypnogogic hallucinations or automatic behavior, either one, which would be germane to this. It's harder for me because even when I close my eyes like for blinking my eyes, all sorts of imagery comes up immediately of things I'm fairly sure that I'm dreaming of. And it's been getting worse over the last two years. And so I've been writing about it in my blog rkmlai.livejournal.com being more revealing of my symptoms publicly. As my symptoms have gotten worse I sought out support groups, then found none, then found groups on facebook of people with narcolepsy in secret and private groups. Admittedly the people I have encountered, many just as profiles, are making a claim of narcolepsy, yet there is a ring of truth as I am on facebook and have narcolepsy, why not them being as real as I am. And the claims made seem similar to my story, so why doubt, as well as who would makeup stuff like this with no clear profit ? So I have found guarded friendship in these groups, as maintaining good boundaries of my experiences and relations, yet hearing the commonalities of the stories.
But I also feel happy that I've been able to have all different work experiences and fun. I have built on my life and done things that I didn't think I'd be able to do, as a "person with narcolepsy" like climb a mountain and go on a bike tour self-supported across a third of the United States. And yet that's hard for people to relate to when they hear that even with those accomplishments, that sometimes I can't make it halfway across town or even out of bed, but that's because my energy level varies. Relatedly I find it frustrating when I cannot move more than a finger on a trackpad, yet people, well meaning yet projecting their own issues, think I should get off of the internet, projecting I am procrastinating or wasting time, when it is their issue and I am personally coping the best I can, moving the finger I can to socialize or get stuff done.
Narcolepsy seems to impact my life in that my life is broken up into small segments. It seems to impact my life that I do a lot of logisticating about how to get to places or get rides to places because I have a wildly erratic energy level and I can't depend that I'll have enough energy to bicycle someplace to get to an appointment, or if I get there that I'll have enough energy to get back with a bicycle in tow. Or even the cognitive energy to stay on task because when I'm tired I get way more distracted or even lose track of what I'm doing or have an idea of how to do something better than what I'm doing which is maybe not that better of an idea. I see why some of the diagnosticians see narcolepsy related to having short attention span.
I find it frustrating that on Monday I can be cleaning my living space and sorting papers but when I awake on Tuesday, I cannot remember what I did on Monday like what order did I use in filing and how I sorted the files. Getting a goal accomplished has been harder to do, than in the past, as in the process of doing the task, I lose energy, then have no recollection of how far I had accomplished nor how I was doing the simple process. It is like, in my mind of a computer analogy, I am soft rebooting constantly but inconsistently.
I think I've given up on people being able to relate to my experience and so I feel a little bit sad about that. I have also found that there are some people who need to be able to relate to what they hear in another in order to understand and feel compassion, and I feel sad because I don't think those persons are going to be able to relate to my experience in order to listen.
So, narcolepsy feels like chronic sleep deprivation. Narcolepsy is caused by excessive dreams and not enough restorative sleep, which creates chronic, persistent sleep deprivation. It would be like for somebody staying up for three days and then trying to function, is how I've heard people describe what I go through daily. I understand why sleep deprivation is used as a torture technique. Even with medication, or even lots of medication, my energy level is subnormal, which is kinda then diagnostic of narcolepsy.
Do you identify as mad? Do you identify as disabled? How do you feel about these words?
I do identify as disabled in the sense that it's hard for me to stay within the societal parameters of "able," like I can't really stay fully awake concentrating for a four hour period or two four hour periods making an eight hour work shift.
Mad to me seems more to describe an emotion, an emotion based on frustration and attachment. Maybe that's not how it's intended here. How do you feel about that? What is your definition of crazy?
Crazy means not living within a conformity of what society deems sane. But sane is one idea, and that's what society is saying is normal. So living beyond that normal in the space of crazy is awesome! And my best friends are crazy. There are challenges but we get through them together. And most everyone has a little crazy. And that's cool.
I think if they saw what I both see when my eyes are closed or my dreams or my lack of a consistent timeline or my lack of having consistent energy, that would all be crazy if not crazy inducing. Not even getting into the whole thing of when I'm sleepy and start doing something and then wake up like signing up for classes online and having no recollection of how I got there. There have been people on the facebook narcolepsy private groups who have described sleep eating, sleep sex, sleep cooking, as well as dangerous experiences like finding random things like finding the stove burner on or a door open without recollection or safety and the post relating how that was a dangerous experience for them and those are all aspects that I've conceived that I've done in my life too. All those stressors added to the regular environmental and societal stressors is too much and has lead to bogus ideas and not helpful thought patterns for me. For myself, I have found it alarming waking up, and finding myself in a grocery store having suddenly woken up and not having any clue how I got there, dressed appropriately and all, yet disconcerting.
There have been a number of times when I've woken up and I'm finding myself walking outside the house with a coffee cup in my hand with coffee in it. I should say ceramic coffee cup. And I have no idea how I got there or where the cup came from, yet I know I did not make the coffee, and that the ceramic cup is not mine, and I have no clue as to where to return it to the coffee shop or cafe I am sure it must have originated from. That repetitive experience would be, in and of itself, crazy inducing. And that's the definition of automatic behavior there. And that's not within societal norms of sane.
When I wake up and I find things out of place and have no idea how they got there, that's also disconcerting because I know probably they're from me but I have no recollection of doing it.
How do I feel about these words? I feel "disabled" puts emphasis on the "dis" but it's way better than "handicapped." I strongly reject the word handicapped. I also know however from an economic point of view, having a label is sometimes necessary for the larger society to assign statuses or capabilities, legal protections, or economic assistance, even as it makes them feel all superior and such.
What's it like being a nurse, and is there a relationship between your nursing and your narcolepsy?
I like helping people. I'm glad I'm a nurse in that I worked for over 15 years and now do volunteer nursing but am otherwise studying geography. I used to do well working at nights. I found out recently through some of the facebook groups that there's a lot of people with narcolepsy who are much more awake from the mid-afternoon to the early am period of time, and I didn't know why night shift was drawing me, but now I do. It was hard for me to study in college because I kept falling asleep in my books. Nursing has a high income to education ratio. Thus I was able to get more income in a shorter period of time than if I'd gotten an architecture degree. I was able to spend less time in an educational institution to get my degree and have a higher income. I however had been in university and college for many many years before learning that, so I have a diverse education.
I feel that my nursing background helps me understand people who have narcolepsy better and that I have more to offer when someone in a support group is complaining about the medical system--I can give some suggestions as to how their interaction, though triggering to them, perhaps why that happened. An example: why someone needed to return to the clinic for a blood test the next day but not the day they were there, because the fasting blood glucose test required them not to have eaten for that day yet. So I feel like I have more support to offer. Nursing has a high degree of flexibility of work environments, so I feel that has served me well. I did registry work (at a variety of hospitals and such), charge nurse stuff, AIDS hospice, and a whole bunch of volunteer stuff, all of which leads to my nursing skills which I think have societal value as a service, whether I am normal or not. I think nursing skills for me has created an opening for volunteering at things like helping form a childcare collective, first aid on events, a feeling of safety for other activists.
I also utilized the nursing aspect recently when I went to help a person with narcolepsy in another state with her health as she had noted her inability to do her activities of daily living had become overwhelming to her.
Have you found much support though religion or activism?
Through narcolepsy groups I have been able to find people who can relate, or people like you, LM, people who are in a potentially somewhat similar boat. I'm having the experience that I accept you. I have the experience that if I was in a space where I needed to only interact with people who needed to be able to relate before being able to listen and have compassion, that would be difficult.
I've found more support though activism than religion. I fear that some of my activism and event organizing is based in my fear of not being able to get my need of being included, of being able to get my need of being included in an event at someplace, and so if I make the event I can find people who are going and get a ride with them because I don't know what my energy level will be like on the day of the event. I definitely think I have the experience that I feel more energetic when I'm around other people and going with their flow of energy and feel like when I'm alone I can also be less energetic, more tired, then become more irritable and less functional. I think I fear sometimes that it's kind of parasitical, but I don't really have much other options for my own internal energy level. I think it's kind of parasitical because it is so consistent for me. I think if there was a more equal sharing of energy in a relationship, a give and take, then I feel it would be more equal, but right now it seems like I hang out with other people and get more energy riding with them, not like they're taking care of me but that I'm around them and feeling more energetic and thus more happy.
I have found a lot of support with the facebook narcolepsy groups, especially the secret ones and the private ones, and yet never would type into a computer something that I wouldn't want read back to me in court of law.
I also found support through the in person narcolepsy conference.
I'm evaluating, seeing this question, whether there is or not religious support here too, because I found that when my son J was refusing to eat anything but pepperoni pizza, that chabad camp did let him bring pepperoni pizzas, and I'm wondering if there's some way that Nevada Desert Experience is accepting of me as me being tired, and I just don't see it because I'm seeing it from my viewpoint. Maybe NDE is, or maybe they are as a group and at times not, as individuals. But then again that group is more an activist organization than a religion.
I don't think I've found much support through Judaism or Christianity or even in yoga.
What advice do you have for anyone with narcolepsy?
Realize that other people's experiences are their own, and when they offer suggestions, realize they are suggestions that would work for them and maybe not for you. Probably offered in a positive way, but also maybe not. I think usually people are trying to offer something positive that they think would work for them, if they hear it. I think finding online narcolepsy support groups is going to be more effective than finding in person support groups because of difficulty traveling, variable unpredictable energy levels. Unfortunately, I think facebook narcolepsy support groups are more effective than forums.
I think changing things up, not letting patterns of behavior ossify, has been immensely helpful to me. I think diversity and a wide network has been useful for resources and support to me. I think "activism" has a wide range of interests and by its nature is trying to attract people to its cause, so that is a good vehicle to go with to have a diversity of people to have within a support network.