Tag Archives: personal

Guest Post: Embracing Disability, Struggling for Emancipation, Part two: Dissecting Content and Medium

24 December, 2010guest postchronic fatigue syndrome, chronic pain, chronic pain conditions, depression, family, family dynamics, fibromyalgia, guest post, personal, personal stories, social attitudesGuest

Eliot Renard is a genderqueer, feminist, socialist Chicagoan who enjoys making math and science accessible and fun for students through various online tutoring programs. Ze also has a health blog, personal blog and tumblr, because compartmentalizing is fun.

This is the second post of a short series; part one, “Rocky Beginnings,” can be read here.

There is a part of growing up that was never really addressed in my family: leaving home and starting your own family. When I met my spouse in college, I realized that I had no idea how to become a healthy, emancipated adult; I simply had no examples to work from. When you throw in the fact that my health began to decline shortly after I began to make earnest attempts at emancipation – and stopped backing down every time I received substantial pushback – the process has frankly been excruciating.

I keep many aspects of my personality secret from my family – as a genderqueer atheist Catholic*, I have decided it is just not worth the effort. I also imagine that the “I thought it was obvious!” defense would be plausible if I were outed, which assuages my guilt a bit. Unfortunately, it becomes difficult to hide the extent to which your illness is affecting your life when you are sleeping 15-20 hours per day, and have dropped out of grad school. Hence, the fact that I have not had a conversation that neither devolved into a frustrating, tear-filled shouting match, nor focused largely on the weather.

As discussed in part one of this series, I have addressed the content of my family’s objections to my “life choices” – because getting sick is obviously a life choice – extensively. Numerous emails, phone conversations and weekends in my hometown have been devoted to explaining exactly what was wrong with each hurtful, disrespectful thing my family says. These conversations usually end with my mother suggesting that if I can’t hold down a job, I should just move back home. Yes, screaming at me, denying my illness, and accusing my spouse of abuse are all meant to make me want to be around that behavior 24/7.

Pursuing a suggestion from my therapist, I have tried redirecting the conversations to the core issues at play – emancipation, healthy boundaries, and the fact that I am an adult. Given that similar discussions took place before this most recent series of health developments, many in regards to the fact that I went to college 200 miles away from home, got married, then moved to a city 500 miles from home, and that my mother has also dealt with issues concerning emancipation and healthy boundaries, I felt that these issues were worth discussing. I recently asked my mother whether she thought she had a right to know every detail about my life. Her response terrified me in a way few things have: “Well, you’re the one having trouble.” The thought that if I ever need help, I may have to trade my basic privacy scared me so much that my vision blacked out. I had never felt the loss of my family’s support as strongly as I did then.

When my attempt to create healthy boundaries is perceived as an abusive spouse separating me from my family, what actions can lead to a happy ending for all involved? I am afraid that, by insisting on what I perceive to be a normal, adult life, I am causing substantial pain to my family, who interpret these actions to be the results of abuse. They are afraid of losing me forever to a terrible situation, and cling more tightly. I am afraid of losing myself forever by staying. No one is happy here. No one is benefiting from this pain.

I don’t know what to do if this continues; I am worried about the effect that being in hopeless situations has on my suicidal and self-harm ideation, especially given that this very situation has triggered both. I have no control over anyone’s actions but my own, but the idea of distancing myself from my very tight-knit family is disheartening. Also unfortunate is the fact that if I don’t talk to my grandmother, Uncles A, B and C won’t talk to me, and Uncles D and E will spend any conversation time pressuring me to reinstate contact. I would also lose absolutely all contact with my brother, niece and nephew. Sadly, I know that if I chose to play family politics here, I would “win”. It just isn’t worth the slimy feeling afterwards.

I am working to build a support network outside of my mother’s family. I have a few very close friends from college and my neighborhood who have helped me tremendously. I was only at my graduate school for a few months, and was so consistently physically excluded from events that I gave up on forming connections there. The group of people that has consistently come through on helping me with whatever I needed is spread all over the world, and many of us have never met face-to-face; my friends from various online communities – activist groups, fandoms, friends-of-friends – have saved my life. Days when I cannot get on the computer (which lives on my bed, along with all of my medications and enough food to last a few days) are rare, and the communities there are amazing – and not always in the inspiring way. It is in this very community that I came to accept my right to feel angry and defeated at times. I don’t have to be a “super-cripple,” and that realization is what keeps me going through the bad days. I am hoping that this ability and time will lead to a healthy resolution with my family. If not, I already belong to a strong community here.

*Trust me, it works. You just have to stretch your definition of “cafeteria Catholicism” a tiny bit further…

Guest Post: PWDs and High-Pressure Sales Techniques

23 December, 2010guest postasperger syndrome, Asperger's, autism, guest post, high-pressure sales techniques, marketing, personalGuest

Hi, I’m Cydne. I’m a pansexual, biofemale whose gender identity changes from day to day. I have severe mental health problems, and Aspergers too, as well as arthritis and IBS. Joy! I’m a massive Trekkie and a video game nerd, and I usually blog at livebythem.tumblr.com.

There was a day last year I remember quite clearly. I went shopping. I spent 20 minutes talking to one of those guys who proposition people on the street for charity donations. He was collecting for a charity I do not agree with, and he was asking for a donation I could not afford. I ended up donating anyway. About an hour beforehand, I bought some overpriced cheese because the aggressive free samples guy made me feel guilty by handing me the product right after I took a sample. I’d also gone large that day on my McDonald’s order, because I forgot to ask for a medium, and the server said “So that’s a large, yeah?” and I was too embarrassed to say no.

Anyone with conditions like mine will have similar stories to tell. Those of us with social phobia who are afraid of confrontation. Those of us on the Autistic Spectrum who are easily led and manipulated. Those of us with depression who are lonely and just thankful for someone to talk to. We are the ones who are most easily tricked by aggressive sales techniques, most likely to tip high when a server pretends to be our friend, most likely to keep something we don’t want for fear of confrontation upon returning it. Yet, statistically, those of us with mental illnesses are more likely to be jobless, and thus, more likely to be unable to afford the things we buy out of fear and guilt. According to a UK study, only 20% of people with mental illnesses are employed.

It is likely that the companies who instruct and train their employees to act in this manner are aware of the effect they have on us. A friend of mine took a seminar in “Assertiveness and Sales Techniques.” He was taught how to spot weaknesses and take advantage of them in order to sell products. He was taught to be slightly flirty with women who seem to care a lot about their appearance, and taught to act like a kind friend to people who shop alone — especially women who look nervous or unhappy. In short, he was taught to spot psychological weak points and use those to sell goods.

I doubt his experience is a rare one. These multinational corporations pay millions of dollars to research firms to help them improve sales. Sales research groups use psychologists to help them better understand how to sell to people, especially on the case of body language. The effect Autism and mental health issues have on body language is well known. So there’s a fair chance that they know they are harming those of us with mental health problems and Autism or Aspergers, for the sake of sales, both emotionally and financially, similar to how they know they are harming those with body dysmorphic disorder by advertising using only photos of the slim and airbrushed.

It’s the donation soliciting people that affect me the most, I think. They seem to deliberately target me, perhaps because I used to shop alone. I find confrontation terrifying. I find meeting new people terrifying. And I’m terrified of what people think of me. So, when a friendly looking guy approaches me and asks me for “a moment of my time to discuss Oxfam,” I find myself unable to walk away, lest he judge me, or say something to me to make me feel bad in some manner.

They always say things like “it’s only £3 a week, anyone can afford that!,” and I find myself so ashamed of being on benefits and having shopping bags with me, that I have to agree and sign up. Even now, I feel like I should tell you that my bags usually contain pet food or replacement clothing, in case you judge me for how I spend my benefits. Heck, let’s be honest, saying “everyone can afford £3 a week” is pretty darned classist, too.

A day spent shopping may not seem all that memorable to most people. But my day shopping last year will likely stay with me forever, serving as a reminder of my vulnerability. I no longer shop alone. I do my shopping online, or with a trusted companion. I am a vulnerable person, through no fault of my own. This is not about being easily persuaded, or being a stereotypical “shopaholic” female with no money management skills. This is about being ill, and knowing that most companies out there will gladly take advantage of that.

Guest Post: Embracing Disability, Struggling for Emancipation, part one: Rocky Beginnings

16 December, 2010guest postchildhood illness, chronic fatigue syndrome, chronic pain conditions, depression, family, family dynamics, fibromyalgia, guest post, mental health, personal, social attitudesGuest

I began experiencing the symptoms of what I now know to be depression, fibromyalgia and chronic fatigue syndrome when I first hit puberty. When I complained, the doctor would usually laugh and attribute my complaints to growing pains. I was told many times by family members and medical professionals to grow up and to stop complaining. So, I did. For a decade.

Fast forward to now, and I am once again vocal about my experiences. This willingness to speak up – to come out as a chronic pain, fatigue, and depression sufferer – has been incredibly beneficial. I am now on treatments that greatly reduce my muscle pain and depression symptoms, although I have yet to find a solution for many other symptoms. I have a supportive husband who understands when it’s me speaking and when it’s the pain speaking. He has adapted admirably to “physical contact rules” that change daily. He encouraged me to seek out a therapist, which I was reluctant to do after an extremely negative experience with a therapist in my childhood. He helps me with whatever tasks I cannot accomplish on a given day. In short, he is a wonderful spouse helping me through a very rough adjustment period. The rest of my family, however, is problematic.

When my health began to decline rapidly this past summer, I assumed that my mother and grandmother, both diagnosed with rheumatoid arthritis for at least a decade, would understand what I was going through, and instinctively know how to support me. This assumption was untrue and unfair; being in pain and watching a loved one in pain are two very different experiences. So, after many conversations in which I asked them repeatedly not to say some hurtful, untrue, and pointless things*, I sent out an email with a list of the offensive remarks, why they were offensive, and a request that the remarks stop immediately.

Unfortunately, this attempt was unsuccessful. Every phone call was about my illness, and how I wasn’t doing enough to get better – I should be exercising more, undergoing this or that treatment, stopping this or that medication, finding something I “really want to do”, unlike the graduate school I loved and had to leave because I couldn’t get out of bed, much less get to campus and perform a 16-hour work day, being happier, etc. Things got bad enough that I attempted suicide in September. It felt like I was not only losing my physical and mental functions, but my family as well. Nothing I tried was working, and it seemed that there was no way out.

After the suicide attempt, I turned off my phone for a week. The first person I called when I felt well enough to use the phone was my little brother – he needed to know that none of this was his fault. My sister’s 6-year-old son happened to be present, so I got to talk to him, as well. My nephew noted that it had been a long time since we had talked. I replied that I was sick and needed to turn my phone off for a while. My nephew’s response was absolutely perfect: “Well, I’m sorry you were sick, but I’m glad you feel better. At school, I got a dinosaur, and…”

Why can’t the adults in my life figure that out? Why is treating someone like a person so difficult, not only for my family, but for people on the street or the bus? Most of my frustration is not actually born from the constant pain, fatigue, fog, etc. – it is from the rest of the world failing to accept me as I am. And, given the amount of frustration my illness itself causes me, that’s saying something.

*[Bingo, anyone?]

Guest Post: I Do Not Suffer From Autism

2 December, 2010guest post, identity, introspective, otheringautism, guest post, identity, myths and misconceptions, neuroatypical, neurodiversity, personal, self-identification, self-perceptionGuest

Rachel Cohen-Rottenberg is a wife, mother, writer, editor, artist, photographer, and leader of the Vermont Chapter of the Autistic Self Advocacy Network (ASAN). She blogs at Journeys with Autism, and her latest book, The Uncharted Path: My Journey with Late-Diagnosed Autism, was published in July of 2010.

I do not suffer from autism.

I suffer when someone calls my way of being a disorder.

I suffer when others invest time and money to prevent people like me from being born.

I suffer when anyone suggests that I might recover or be cured.

I suffer when others feel sorry for me or for the family I have created.

I suffer when I fear that people will consider me broken.

I suffer when my being autistic scares people away.

I suffer when others try to silence me.

I suffer when people suggest that I do not have all the same feelings they do.

I suffer because I must describe my way of being by referring to a medical diagnosis.

I suffer because I live in a society that does not celebrate difference.

I suffer because I live in a culture that does not cultivate sensitivity.

I suffer because I live in an environment that values appearance over substance.

I suffer because I live within a social order that calculates human worth based on productivity and conformity.

I suffer because I live in a world that does not honor the gifts that autism brings me.

I suffer because I have learned to apologize for who I am.

But make no mistake: I do not suffer from autism. I do not suffer from who I am.

[Interested in guest posting for FWD? Please see our Guest Posting page for more information!]

Happy post: Winston

11 November, 2010happy posts, small storieshappiness, personal, personal stories, petsAnnaham

[Image description: image shows a small silver and blond Yorkshire Terrier with its two front legs up on a railing in an outdoor setting, its red leash off to the right side. It is photographed from a high angle.]

I’ve been meaning to write this post for a while, and have never quite known how to start it. I’ll start with this: like a lot of PWDs, I have a pet. I’m sure that posting something about one’s beloved dog on what is a strongly political site seems unusual, but as of late I have been reading many dog-related blogs (mostly on Tumblr) and am consistently moved by posts where the submitter talks about their pet and some of the many varied aspects of the human/animal bond.

I have a pretty old (for the breed) Yorkshire Terrier named Winston. While he is not a service dog (he is too ill-behaved to ever serve in that capacity, and I suspect that fibromyalgia is not a condition that qualifies for a service animal!), he makes my life immeasurably better. Oh, he’s kind of a brat, but his general attitude is so completely, bizarrely happy most of the time that I can’t help but smile whenever he’s around. Yorkshire Terriers are supposed to be one of the smarter (albeit louder) small breeds, but Winston is not the brightest bulb around. This is not a bad thing, however — his other personality traits make up for the fact that he can’t do very many tricks (outside of sitting, particularly if food is involved).

Small dogs, in general, may seem like they’re a pain in the ass to take care of, at least to outsiders. Certainly, there are some small dogs with very high energy (I’ve met a few) who need to be walked multiple times per day so that their owners can get some relief from the dogs’ barking or constant need for attention. Fortunately for me, Winston is not one of these. He has a lot of energy, but this is mostly because he sleeps upwards of 10 hours per day. On days when I’m not feeling well and need to lie down or take a nap, Winston is more than happy to hang out. If I am in too much pain to take him on a long walk, he seems perfectly happy with a shorter walk. All things considered, he’s a pretty mellow, fairly agreeable little dog — except for when he sees other dogs, which is very often an occasion for over-excitement, and possibly a lot of barking and/or straining on the leash.

Somewhat hilariously, he also snores. Loudly.

Heel, toe

21 October, 2010bodies, identity, normalitycerebral palsy, mental health, movement, normality, personal, personal storiesAnnaham

As I’ve mentioned previously, I have fairly mild cerebral palsy that mostly affects the left side of my body, and my left leg and foot in particular.

I’ve had sort of a strange relationship with my left side, and the foot attached. Because my left leg is a few inches shorter than my right one, my left foot has made a bizarre and ongoing effort to make up the difference. While my right foot moves “normally” — that is, when I step with it, the foot goes fairly flat once on the ground — my left foot moves and rests in a manner that is probably better befitting a pointe shoe. My left foot tends to step forward with the ball of the foot and the toes, instead of having a flat gait like the right foot. As a result of my rather odd gait, I have very thick calluses on both the ball of my left foot and all of my left toes — and no callus at all on my left heel.

With the help of physical therapy, I spent much of my childhood and adolescence trying to make my shorter left leg and foot “match” the gait of its twin — even when it physically hurt to do so. [I should point out here that I most definitely do not mean to knock physical therapy as a whole, which has helped me immeasurably and has been helpful to a great many folks!] One advantage of physical therapy was that it made my left leg stronger, and made my balance somewhat better as a result; though my left side’s balance isn’t amazing or superhuman or all caught up with the right at this point in time, it is better than it was previously. Thanks to my existing mental health issues, before I started having chronic pain issues (which directed my focus to other things — namely, how I feel, physically, instead of whether my body parts “look right”) I was pretty used to mentally raking myself over some very hot coals for not being able to make my left leg as “good” as the right.

At some point, I decided to stop making myself feel terrible about the fact that my leg left and foot will probably never match totally with the right side’s leg and foot. Yes, I walk sort of oddly. Sometimes, I can keep my left heel and leg “down” correctly and am able to move them like they should move; sometimes, I can’t do either (particularly during fibro flare-ups). My left leg is still useful, even if it is skinnier and less-developed than my right. My left foot is still awesome, to me, even if it is kind of spastic, tends to stick out at a weird angle and has calluses in all the “wrong” places. Trying to walk “correctly” has been an ongoing process for me, and the fact that I often cannot do it — and can, simultaneously, be okay with that — has been crucially important to self-acceptance. There is no use, after all, in mentally flagellating myself for not fulfilling what I have found to be an unreachable standard.

Going Through the Motions

18 October, 2010introspectivechronic pain conditions, coping, disability, personalOuyang Dan

I’ve been in hiding.

I admit it.

I’ve been shoving myself headlong into activities that keep my busy, and exhausted.

Still I always feel
This strange estrangement
Nothing here is real, nothing here is right*

“Wow! Aren’t you Supermom?”

Well, not really. It just keeps me occupied.

Just hoping no one knows
That I’ve been*

But really, I don’t have this kind of energy. To run to all these practices and game and meetings. To keep up with the chores. The volunteer events. To make meals. The group photos for people. Bringing snacks and handing out sports drinks. To pack lunches. The doctor’s appointments.

Going through the motions
Walking through the part

I have drawn it from somewhere. But I don’t always have somewhere from which to draw it. I feel like I have had to, though. Because if I didn’t I would have to think about the things that roll around in my mind.

And I just don’t want to do that.

I was always brave
And kind of righteous
Now I find I’m wavering*

It isn’t a pity party, or a call for anyone to feel sorry for me. I can’t even say it is a moment of clarity where I realize the err of my ways and that I will stop this silliness and start taking better care of myself. It’s a little late for that now that events are in full swing and people are counting on me to keep going somehow.

It’s my coping mechanism… however good or bad it may be. We all have them. Mine may just lead to more crashes, a slightly elevated pain med use (which is still well below my prescribed allowance), and periodic bouts of me crying into my pillow at night because I am too exhausted and in too much pain to sleep.

Will I stay this way forever?
Sleepwalk through my life’s endeavor?*

So I keep going through the motions.

Eventually I have to pay that proverbial piper (that jerk), but it keeps me going, in a sense, for now.

I don’t want to be…

Going through the motions

*“Going Through the Motions”, “From Once More With Feeling”, Buffy the Vampire Slayer, Season 6

Someone Get This Rock Off Of My Chest…

16 October, 2010intersectionality, introspective, life changes, relationshipschoices, disability, family, intersectionality, mental health, personal, side effectsOuyang Dan

I read a post at Crazy Mermaid’s Blog recently that neatly summarized some things that I have been struggling with lately.

Friends and loved ones of those with a mental illness have a hard time understanding noncompliance with medication. Why, they reason, if the drug helps control the symptoms of the mental illness, doesn’t the mentally ill person take the medication?

One of the biggest reasons for noncompliance is the side effects of the drugs. Especially for those with more severe cases, the side effects of strong doses of medication can cause horrific side effects. So horrific, in fact, that the patient makes the conscious decision to stop taking the medication to avoid those side effects. Living with the mental illness becomes more appealing than living without it.

I linked it in my most recent RR, but it hit home so well that I really had to bring it back around here for some tossing around. I have been rolling some things around in my brain on my own like a toy surprise… the kind that can eat you up… and while the particular sitch that Crazy Mermaid describes doesn’t apply specifically to me, it is relevant.

We all have, I think, things in our lives that we face that create little fissures that attempt to pull us apart from any amount of happiness we might grasp onto in our lives. Those of us in the disabled community know that this kind of stress can be especially taxing on our resources as the two sides rub together, causing the tiny quakes and aftershocks of the impending snaps of what we can handle. Sometimes the aftermath of having to live on the fault line long enough results is losses we, as people, can’t quite handle with smiles on our faces, if at all.

These things might not all be catastrophic life situations, but sometimes they are. Perhaps it is, on one side of the fault, the choice to not medicate and along with it the constant shame and scrutiny from doctors, family, friends, and basically everyone you might know (or the lack of understanding of your continued symptoms from those “anti Big Pharma” friends who think you really can have it both ways). On the other, living daily with side effects that leave you with little to no quality of life. Crazy Mermaid listed a few fairly severe ones. I know some of my medications for other-than-mental illness conditions come with their own host of side effects that I had to consider, including vomiting, vertigo, extreme fatigue, and that is just to name some pleasant ones. They can sap your will to get out of bed. You have to weigh these options carefully as the ground trembles beneath you. Often, you don’t have anything or anyone to cling to as you weigh your bleak options. What choice is it, really, sometimes?

Perhaps your choice is whether to accept a job across the country (or the world, in another country you have never even seen before) because it will provide for your immediate family. The other side of that precipice is the close-knit extended family you leave behind: grandparents and aunts and uncles who all had a hand in raising you, some of whom now could use your help as they get older. Their lives continue and you miss the daily events that used to be part of your daily life. The little things that mattered are missing from your life now as your support system is thousands of miles behind you. Their cycles of life don’t stand still because you have moved away. How do you make that choice, and what if you are a partner of someone who takes that job? Do you choose your partner or your family (and how do you choose)? Some of these answers might seems snap-crackle easy… but if you really break it down, they are many faces of the rock to look at. Do you choose financial or emotional security?

How do you make those choices? How do you survive the tremors of straddling the fissure while you weigh your options? When do the rock and hard place stop grinding against you to let you breathe for a moment so you can rest?

FWD/Forward

FWD (feminists with disabilities) for a way forward