Sensational Spoken Word Poetry Favorites Worth Your Time

A few years ago, while attempting to pare down the rather sizeable list of to-watch TEDtalks I’d accumulated, a talk that opened with a spoken word poem caught my attention, and my heartstrings. It was Sarah Kay’s “If I should have a daughter…” Even once the poem had ended, Sarah was delightful to listen to as she went on to discuss what spoken word poetry is to her.

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I was soon curious to hear more of, not only Sarah’s poems, but others as well. This was relatively new territory for me, having never heard or experienced much spoken work poetry before, but I was eager, and handsomely rewarded.

I spent months of solid listening to spoken word poetry from all kinds of poets on a multitude of topics, hungry for more, searching for the ones that gave me chills or made me want to cry by the end, sometimes poems that had me laughing, or conveyed a shared experiences; poems that struck through my heart and pierced into my soul and stayed there; poems I couldn’t get out of my head, and that still remain.

I have resisted the urge to repeatedly share each one as I find, watch and rewatch them, but they deserve to be shared, listened to, and remembered. So, I’ve collected a handful of my extreme favorites to share. Whether you listen to them all at one time, or return to listen now and then, I cannot recommend these poems enough and hope that you take the times to listen to a few.

Normally I would be prone to give a comment about each, but I would rather let the poets speak for themselves, so I’ve added a couple quotes instead; the best way to experience them is to actually do so by listening.

(There are some sensitive topics covered, please take care of yourself if any of them becomes too much or triggering)

Mental Illness/Mental Health

Catalina Ferro– Anxiety Group

“..these people who fight everyday like fucking gladiators who fight demons worse than you and I can dream of, just because they want so badly to live, to hold on, to love, because you can’t be this afraid of losing everything if you don’t love everything first….”

Neil Hilborn– Joey

“When I wanted to open myself up and see if there were really bees rattling around in there, my parents got my a therapist. I can pinpoint the session that brought be back to the world, that session cost $75…it took weeks of $75 to get to the one that saved my life. We both had parents that believed us when we said we weren’t okay but mine could afford to do something about it…”

Javon Johnson & Terisa Siagatonu– PTSD

“When is his teacher going to stop sending him to the principal and start sending him to the counselor? Why do we fire the counselor? What happened to the art classes, to PE, and health center, because trauma is an STD, a socially transmitted disease; meaning my trauma is your trauma, your/his/her trauma is mine, and that what it means to be in a community. There only difference there is between a solider with PTSD and one of my students with it is a soldier gets to leave the battlefield while my kids go home to it…”

Education

Denice Frohman– Weapons

“At entrance of a white Philadelphia high school, officer with gun perched on each hip asks me if I a weapon. I hold my book, he doesn’t find that funny….I’m escorted to an audtorium with 130 black and latino students. We talk about hip hop, they think poetry is what old white people do…I ask them if they have dreams…another student in the 8th row tries to decide if this is a trick question. There’s no right answer, I say, but they’re far too comfortable with the right to remain silent…the principal is now staring at me in anticipation of what I have to say next. He’s afraid that they will leave with weapons. I am afraid they will not know the ones that already exist”.

Taylor Mali -What Teachers Make

“…I can make a C+ feel like a congressional medal of honor. I can make an A- feel like a slap in the face; how dare you waste my time with anything less than than your best? …You want to know what I make? I make kids wonder, I make then question, I make them criticize, I make them apologize and mean it…”

Dylan Garity– Rigged Game

“(my sister) teaches ESL in an elementary school in Boston and every week she tells me stories about her students…learning to read in a new language when you can’t even read in your own is like trying to heal a burn victim  by drowning them. We are telling these children, who have spent their whole lives in the deep end, that they’ll learn how to swim if they just float out a little farther…the winners of a rigged game should not get to write the rules”

Men’s & Women’s Issues

Lily Myers– Shrinking Women

“I learned to absorb, I took lessons from our mother in creating space around myself…Nights I hear her creep down to eat plain yogurt in the dark, a fugitive stealing calories to which she does not feel entitled; deciding how many bites is too many, how much space she deserves to occupy…”

Katie Makkai– Pretty

“The word hangs from our mothers’ hearts in a shrill fluorescent floodlight of worry, ‘Will I be wanted? Worthy? Pretty?’ …I have not seen my own face in 10 years, but this is not about me. This is about the self-mutilating circus we have painted ourselves clowns in. About women who will prowl 30 stores in 6 malls to find the right cocktail dress, but haven’t a clue where to find fulfillment or how wear joy, wandering through life shackled to a shopping bag, beneath those 2 pretty syllables.”

Guante– Ten Responses to the Phrase ‘Man Up’

“…contrary to what you may believe, not every problem can be solved by “growing a pair.” You can’t arm-wrestle your way out of chemical depression. The CEO of the company that just laid you off does not care how much you bench. And I promise, there is no lite beer in the universe full-bodied enough to make you love yourself.”

Sierra Demulder– Paper Dolls

“Imagine each victim is an acrobat. Her sanity, a balancing act. Our response is the unfailing safety net. We never expect to see her across the wire….Nothing was stolen from you. Your body is not a hand-me-down. There is nothing that sits inside you holding your worth, no locket that can be seen or touched, fucked from your stomach to be left on concrete. I know it’s hard to feel perfect when you can’t tell an Adam’s apple from a fist. Some ashtray of a man picked you to play his Eden but I will not watch you collapse.”

Dylan Garity– Friend Zone

“The problem is, when I started thinking of myself as a savior, I ended up thinking of myself as a savior with a salary. You put in your hours as a nice guy and sex is just a living wage but sex is not a transaction.Sex is not a handshake to seal some deal. That girl did not owe me anything.”

Anna Binkovitz– Asking For

“But in my experience, one of the chief perks of having sex with an adult is that if they want something, they can ask for it. For instance, if I’m at dinner with my mom and I want her to pass the salt, I don’t put on my special salt costume. I ask for the salt! With my word place!”

LGBTQ+

Denice Frohman– Dear Straight People

“..Dear Straight People, You’re the reason we stay in the closet. You’re the reason we even have a closet. I don’t like closets, but you made the living room an unshared space and now I’m feeling like a guest in my own house.Dear Straight People, Sexuality and gender? Two different things combined in many different ways. If you mismatch your socks, you understand…”

Ethan Smith- A Letter to the Girl I Use to Be

“I tried to cross you out like a line in my memoir. I wished I could erase completely
And maybe I’m misunderstanding the definition of death. But even though parts of you still exist, you are not here…”

Joy Young– The Queer Hokey-Pokey

“She beamed about it—her hair her own queer bat-signal in the sky announcing her lesbian arrival,though she’s been here as long as I remember. She finally felt super: stripped of her invisibility, empowered, her remaining hair wrapped around her neck like a lasso of truth.  She chokes out another gasp of ‘I’m gay’ when men come onto her, and they’ll believe her now.”

Cassidy Foust- Ghostbusters (is so gay…)

“The new ghostbusters move is so gay that no one is actually allowed to talk about it…a generation of queer girls leaves the theater masters of hide-and-seek…we know we can only exist on screen as Schrodinger’s Queer…”

About using your voice and standing up

Sam Cook– Flatland

Each of us only gets so many opportunities to show another person that humanity is more than just the people behind you who will trample you when you fall.

Connecting

Marshall Davis Jones– Touchscreen

“….doesn’t it feel good to touch? my world is so digital that I have forgotten what that feels like. It used to be hard to connect when friends formed cliques but it’s even more difficult to connect now that clicks form friends…iPod iMac iPhone iChat I can do all of these things without making eye contact…”

These poems and many more have inspired me with my own poetry, even to the point of being curious to try spoken word myself. Perhaps some day.

What did you think of these? Do you have any favorites of your own? Have you ever tried or thought about attempting to do some spoken word yourself? Please comment, I’d love to know!

 

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My Visit to the Tremendous Angel Oak Tree

In an attempt to regroup and heal a fraction from the heinous and disappointing ramifications of the past year and a half or so, a good friend and I decided to attempt to get away for a few days…I haven’t really been able to relax much because…well, the obvious reasons concerning the world currently, but I have managed to find a few moments of enjoyment.

On Sunday, I finally got to visit a tree that I’ve been in love with for years and wanted to visit: the Angel Oak Tree in John’s Island, SC, and it was beautiful beyond words to see in person. Pictures don’t do her justice, but here are some taken on my visit. (photos not taken by me are noted)

Imagine all this beauty has seen in its hundreds of years of life…

 

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photo by Brandon Kahn
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photo by Brandon Kahn

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A final hug before parting…until next time….

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photo taken by Brandon

I will be back home tomorrow from my attempt at a vacation from the real world. I’m still trying to recharge because no matter what, there’s a lot to be done when I get back home, and not all of it is writing related.

I want to live in a world where we can have trees that are hundreds of years old, and people to appreciate them. So take a moment, take a breath, enjoy, and get to work. I will be.

Have you ever been to the Angel Oak Tree, or visited another place you’ve longed to see? Please share, I’d love to know!

Looking to the New Year

With a weary sigh I say that 2016 is nearly at an end, and I cannot stand to speculate what may happen in the coming year, on so many levels; if you follow me on social media at all, it probably has not escaped your notice that I’ve been having some troubles with my usual nemeses: chronic illness, PTSD, anxiety, and depression, all of which are connected and fuel off each other.

At this time of year, goal setting for the next journey around the sun is expected. New Year’s Resolutions abound, and are so often broken before the new January is finished. As evidenced by my post around this time last year, I do it too….but then again, I goal set and add expectations to myself continuously throughout the year, on large and small scales, often reevaluating and adjusting as I go.

This year…I don’t think I’m going to do anymore goal setting than I have, and naturally do, even compulsively. Honestly, how many times can I rewrite, resort, and rework my goals without actually moving forward enough to require it?

After a lot of thought and consideration, not to mention the all too raw and recent passing of Carrie Fisher, and an unexpected dive into #sexabusechat on Twitter regarding self-compassion and self-care, I’m going to try and take a different tact…

But before I go into what I’m going to do, I feel the need to highlight what I currently do. carrie-fisher-im-mentally-ill-quoteIn the light of such a strong and courageous advocate concerning mental health, a woman who pulled no punches and spoke her mind, and the truth, no longer able to continue the fight against stigma, it’s the added motivation to work on how I intend to utilize my own voice in more ways for the purpose.

Due to a combination of my natural personality and tendencies with that of what I’ve experienced regarding trauma …I’m incredibly cruel to myself. I wouldn’t dream of talking to anyone or speaking of anyone the way that I speak to and often about myself. As discussed last night in the chat, survivors of abuse have to learn a new vocabulary because the one they are taught is one of self-punishment and self-loathing. I’m still learning the vocabulary of self-compassion.

There’s something else that is highly unhelpful that I’ve been trying to work on, and that is internalized ableism. For those who are not familiar, internalized ableism can surface in many ways, but it’s essentially the practice of internalizing the ideas, prejudices, and judgments of a society that sees those with disabilities as “other” and unable to “properly” contribute to it; it’s the quickest way to demoralize yourself for something that you have no control over, and I’m incredibly guilty of it.

For me, it’s largely the limitations and issues I have to contend with that come from dealing with any number of things, but not least of which involves my chronic illnesses. I have begrudgingly attempted to make compensations for my physical limitations (most of the time); this can take the form of how often I leave my lair, where I go, what I take with me, who I go with, when I go, what I wear (sun, weather) etc. I do spoon math to decide my activities for the week and individual days and mostly keep within my safe threshold, including being sure to have adequate time to lay down and recuperate when necessary.

The problem is that I have an exceedingly difficult time affording the same consideration for my mental limitations….to clarify, writing is something you can do in a more reclined position, it can be done with some level of accuracy with or without certain necessary medicines in my system, in the comfort of my lair, where I do not have to worry about social energy because I’m often alone; somehow, my mind equates this as something that can be done within my physical limitations that I “should” be able to do nearly continuously, pushing myself to the point of attempting to compensate for the ways I “fall short” (i.e. not able to keep up with social norms of acceptable energy levels and ability to do things).

Fatigue, brain fog, cognitive issues, all are symptoms that I deal with that I always seem to paint over and try to push through…often to my detriment. I become frustrated with my inability to work, I attempt to work, I’m unable to be productive, I get more upset, and it devolves from there. The point is, I don’t allow myself the space I need to accommodate these, and what’s more, I harass myself about not getting enough done….

Ever had a boss that looked over your shoulder (or made you feel like they were), watching your every move, evaluating you constantly, all while yelling at you, insulting you, hounding you about not getting enough done, not doing anything well enough? Yes? No? A little? Well this is me to myself, and it’s hard to get away from me.

You see that I know this about myself, I have for years, and am constantly working on trying to correct these things. It’s not bad to expect a lot out of yourself and push for your best, but it is bad to overwhelm yourself and then get mad about it. At the very least, it’s unproductive, unhelpful, and isn’t the best way to feel good about yourself or what you’re working on.

Which brings me back to things I want to do differently. Rachel Thompson (@RachelintheOC), made two excellent suggestions during the Twitter #sexabusechat last night that I would like to put into action for myself.

First:

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Okay, so maybe I will be reworking my goals a little bit to do this, but it’s not the same way I usually do. Just like she points out, it’s about helping focus, which I sorely need, and it will (hopefully) relieve enough pressure to get a steady flow so that the 5 circled goals can change.

And second:

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One of the best things about this for me is the normalizing of the need for these shorter increments of time to be enough. Beyond the issues stemming from PTSD related concentration issues and into chronic illness, this suggestion was like a breath of fresh air; I’m still at a place where this felt like permission to try something different, something not within “normal” standards of working time, but it felt good, vindicating.

I have some hope that, if I actually keep with these suggestions, and continue learning the language of self-compassion, I think I might just surprise myself….hopefully even in a good way.

Some people need to learn more empathy and compassion for others, some need to learn to have compassion for themselves; either way, the world could certainly use more of it.

How can you be nicer to yourself and others this coming year? Do you have any (reasonable) goals for yourself?

And always

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What I Do and Do Not Miss About College

Last spring, after nine long years, I graduated with my Bachelor’s Degree; this was an enormous milestone, including the fact that last fall marked the first time in 23 years that I would not be going to school. That’s most of my life at this point.

I’ve had a year of surreal moments as it sunk in that I was no longer going to school. I’ll admit that depression has set in heavy at times over the past year because I didn’t have the goal and focus of school. It threw me off a bit, even if I was thrilled to have finally finished and have the time and energy to use for other things (like writing!).

I’ve also noticed that while there are plenty of things that I don’t miss about being in college (grade school was absolute hell and I will never miss it, but we won’t go there, this post kind of sums it up), there were also things that I’ve missed dearly.

After a year, it’s still a little surreal to not be in school, and since I couldn’t get it out of my head, I decided to remind myself of the things I do and don’t miss about being in college.

 

Things I Don’t Miss:

  1. Signing up for classes– I absolutely do not miss the stress of waiting for registration time. When you have certain classes you need to get into (along with plenty of other students), as well as health issues that affect the times you need, it was definitely stress-inducing for me.
  1. Parking– Parking was an absolute nightmare, especially when you add in a disability, rude people, and construction at the school, including a parking lot being taken over for it. I cannot count the number of times I worried about not finding a parking spot close enough to the building I needed to be in. Far too many people took it upon themselves to park illegally in handicap spots without decals, which certainly did not help.
  1. Worrying about getting to class- This was a huge issue when I would have classes back to back that were located on opposite ends of the campus. There were usually 10-15 minutes between class times, but when you include parking worry (I had to drive from one building to the other some semesters), as well as being an early-punctual individual, it made for some incredibly stressful times throughout the semester.
  1. Having to write papers- My professors would probably be surprised and horrified to learn how much I procrastinated writing my papers. Often I wrote them a couple of days before they were due, if not the night before. It was just how my brain worked. Even when I was interested in the topic, it was often an enormous feat to sit myself down and focus…it’s a major issue with my own writing too sometimes but anyway. I hated the possibility of not doing as well on the current paper I was writing as on a previous one; I know, incredibly silly, but it added to my distaste and stress of having to write papers for a grade.
  1. Group projects- It’s hard to describe just how much I loathed group projects…it’s group projects.jpgnot that I cannot work with a group, I absolutely can, but it has to be a group of people that are willing to put as much work and effort into it as I was in order to get the grade I desired. The number of times group members didn’t do their part, or didn’t communicate well, or otherwise did not pull their weight…..let’s just say that I’m ecstatic that I don’t have to worry about group projects ever again unless it’s my own choice, and then I can kick myself.
  1. Rising tuition costs and some ridiculous fees- Have to throw it out there, I do not miss having to worry about tuition and books. It was to a point where I had to figure the cost of taking less classes for more semesters against taking more classes in one semester to cut down on having to pay the fees over again per semester.

 

Things I Do Miss:

  1. Passionate and knowledgeable professors-The professor makes or breaks a class. Besides a professor that is understanding and willing to help students when possible, the ones that were particularly knowledgeable about their subjects were the best. In addition, one of the best parts of certain knowledgeable professors was their passion and desire to impart all they could on ready and open minds. I sincerely miss these professors. They were understanding, but challenging, and wanted everyone to participate and succeed.
  1. Discussions– There isn’t anything like a good discussion with different perspectives and ideas. Discussing reading material or some part of a lecture often became tangents of conversations in many of my classes, and I loved every minute of it. Intelligent and thoughtful conversation about new things, allowing us to apply new ideas and materials we’d learned in class….yes, I very much miss the discussions.
  1. Having to write some of the papers- Though I may not have enjoyed the actual process, I have to say that I miss being given some of the assignments to write about. When papers were on topics that I was interested in and involved applying techniques or things learned in the material or in class was wonderful. I loved utilizing my knowledge and being able to apply the concepts I had accumulated, thus further embedding all that I’d learned. May be silly to some, but I definitely miss it sometimes.
  1. Interesting Classes-I would have loved to spend more time just taking random classes with fantastic professors because there were a lot of interesting classes available, including some of the ones I was able to take. I could probably happily spend my life reading and discussing literature and psychology, so it’s hardly a surprise to those who really know me. I love to learn and I enjoy being around others that do as well and the discussion that come from such minds.

No matter how much time passes, I have a feeling I will continue to feel the same way. Most of my life has been in school, only truly finding the joy in it in the last few years, a little ironically. My school journey was incredibly difficult for a number of reasons, some easily enough explained here , but I still learned so much, on and off campus.

Part of me thinks of going back some day, but we will see. For now though, all the things I don’t miss, while unpleasant, were (mostly) worth dealing with to experience the things I do miss.

What about you? Anything you miss from your college experience?

 

For World APS Day: Facts and Life with APS

Have you even heard of APS? Yes? No? Maybe? Well, please watch this video to learn a bit more about it, and why it matters.

Some links:

28 Things You May Not Know About My Invisible Illnesses

http://www.apsfa.org/

https://www.nhlbi.nih.gov/health/health-topics/topics/aps

Thank you to any and all that watch this video. I know it’s lengthy and I’m not at my best, so I hope you will forgive me. This is an important issue and I hope perhaps you learned a little something today. Wishing you all the best!

Do you or anyone you know have APS?

world APS day

28 Things You May Not Know About My Invisible Illness

If you follow me on social media or know me in some capacity, you may have heard me mention chronic invisible illness and pain. This year marks a decade since my first real hospital visit (aside from appendicitis in 6th grade) and subsequent first diagnosis of my first autoimmune disease. That’s right, I hit the jackpot and have more than one.

A chronic illness, for those unfamiliar with the term, is a disease or disorder that may develop slowly, but is prolonged in duration, often lasting the remainder of the individual’s lifetime; they are rarely cured completely and usually involve a life of attempting to maintain a livable baseline through various treatments.

As for an invisible illness, it’s a little something like this:

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One day I stumbled upon this post, which the author posted in support of Invisible Illness Awareness week where she answered 30 things you may not know about her invisible illness. It was a succinct and enlightening overview of what living with Lyme disease has been like for her. Having been unsure how to convey some part of my own experiences living with chronic invisible illnesses, I thought it might be a decent approach to use myself. There’s not a lot of detail, but it hits some highlights. The original poster of the questions is none other than Christin Miserandino , the founder of ButYouDontLookSick.com and the use of Spoon Theory to describe living with chronic invisible illness (you may have heard me mention spoons before.)

Both Invisible and Chronic Illness Awareness Weeks are in September, but since both Lupus and Fibromyalgia Awareness are in May, and APS Awareness is in June, now is as good a time as any to share.

Here are 28 things you may not know about my chronic invisible illnesses.

  1. The illness I live with is: I have Lupus (SLE), APS (antiphospholipid antibody syndrome) with a history of blood clots including a pulmonary embolism and 6 TIA’s, I also have Fibromyalgia, and often deal with migraines, arthritis, a history of SVT, and the symptoms and issues those bring with them.
  1. I was diagnosed with it in the year: 2006 was when we found I had APS and an autoimmune disease considered most likely Lupus; this was after a pulmonary embolism was luckily caught and a ton of tests were done, I was 17. I was officially diagnosed with Lupus in 2008, and in my early 20’s I was diagnosed with Fibromyalgia and arthritis
  1. I have had symptoms since: at least 16 years old, though my mother believes I’ve shown some most of my life
  1. The biggest adjustment I’ve had to make is: I’m still learning to live with my limitations. After 10 years I’m still not used to the fact that one morning I can get up and run errands or do some work or activity outside of my home for a few hours, and others I can barely get out of bed and move to my chair or couch due to pain, migraine, or fatigue. Either that or adjusting to taking medicine…I’ve had to start taking more medicine than I ever wanted. I’ve always hated taking pills, but now I have to, because at least they’re better than the hospital or another stroke or something worse, or shots every 12 hours (and these aren’t insulin needles).
  1. Most people assume: Far too many things….that if you know one person with chronic-illness-ecard-6Lupus/APS/Fibro, you’ve heard all there is to know, that if you don’t look like a specific individual’s idea of sick then you must not be; a lot of this goes along with age, too. There’s a prevailing, possibly subconscious, idea that if you’re a certain age, you have the ability to move past or somehow grow out of whatever malady is slowing things down and making things difficult for you, which couldn’t be farther from the truth.
  1. The hardest part about mornings are: Never knowing what I’m going to wake up to, or when. Every day is a dice roll, and sometimes it’s by the hour.
  1. My favorite guilty pleasure is: Probably eating French fries. It’s about the only fried anything I really eat anymore besides the occasional cheese stick. In the arduous attempt to eat better for myself, potatoes don’t factor in as much as I currently succumb to the desire.
  1. A gadget I couldn’t live without is: I really don’t know. Hard for me to think of anything I use as a gadget in this way. I guess heating pads in general, the microwave ones are nice. Maybe my Brita water filter, since I don’t have to worry about buying or carrying water anymore, or pressure pointer for knots in my back…
  1. The hardest part about nights are: Getting to sleep, staying asleep, finding a comfortable position to sleep in…it’s also more difficult to reach someone (and I feel far more guilty about asking for help) if there’s a new, strange, or unnerving problem and I am not sure what I should do, or feel that someone else should be aware.
  1. Each day I take: Anywhere between 2 and 10 pills. My Coumadin dose fluctuates, and many medicines are for as needed, such as medicine for my migraines, or a muscle relaxer for my back, etc. I need to get better about taking vitamins, like vitamin D especially since I have a deficiency (being allergic to the sun and all, because I’m a vampire). Multivitamins are too big.
  1. Regarding alternative treatments I: I prefer alternative treatments to most any other. Though, I believe it’s all a matter of finding what works for you and your specific needs. I have had acupuncture before, for instance, and it seriously helped me at the time. Then again, it would work better if I used some of them more, such as soaking in a bath for 10-15 minutes every day or so to help arthritis.
  1. Regarding working and career: I had hopes of getting through enough school to be a counselor of some kind, meaning I would need at least a Master’s Degree. It took me 9 years to earn my Bachelor’s degree, and if you only knew the half of what it took to get there…Needless to say, I’ve had a lot of issues with jobs. At the moment, I’m doing all I can to make this writing thing happen because I can do it at home, or hospital, or elsewhere. I can work at my own pace and in as much comfort as I can find. It doesn’t hurt that I’ve always had a love for books and writing, or having written as Dorothy Parker aptly describes. So here I am, trying to carve out whatever path I can.
  1. People would be surprised to know: How clueless some doctors are and how often you’re prescribed a drug for reasons other than what is best suited for you (some doctors tend to go with companies they get kickbacks or other fringe benefits from. Ever seen a suited person carrying drinks or bags, or rolling a cooler into a doctor’s office? free lunch.) Also, how upset some doctors get because you came prepared with questions and information that they didn’t hand to you and that conflicts or contradicts them and they weren’t expecting, or if you seem to know more about something than they do. You can say no to your doctor, you can ask questions, refuse or attempt to request tests.
  1. The hardest thing to accept about my new reality has been: All of the things I felt I should have been capable of doing and accomplishing, dealing with limitations and outcomes. Watching my younger sister grow up to live out a life that could have just as easily been mine too can be difficult, to say the least. She just graduated and received her Master’s in Social Work, she received her Bachelor’s Degree in Psychology (same as me) the year before I did, but after the usual four years, while raising a daughter, and she will be having my second niece within the next month. Most people imagine what their life could have been like, I live alongside a demonstration. Don’t get me wrong, I’m truly ecstatic for and incredibly proud of my sister and all she tackles because she really is amazing, and I wouldn’t change things. But that doesn’t make it any easier to accept some of the changes and choices I’ve had to deal with in my own life. For the most part I have accepted it, but sometimes I get sucker punched by it.
  1. Something I never thought I could do with my illness that I did was: I am able to horseback ride, though it’s at great cost. I’ve only been once in a very long time.
  1. The commercials about my illness: I have no idea, I don’t have cable so I have no idea what might be said in one, if there even is a commercial for some of them, like APS.
  1. Something I really miss doing since I was diagnosed is: Not having to worry about my energy, not just that day but the surrounding days.
  1. It was really hard to have to give up: My independence, having to need other people and ask for help. I prefer to do things on my own, so the fact that since my early 20’s I’ve needed help with taking the trash out, or needing help being taken to (or deciding to go to) a hospital…so many things you don’t even realize are related to that feeling of independence. I won’t lie, it can be a bitter pill at times.
  1. A new hobby I have taken up since my diagnosis is: I’ve taken up and shifted from hobby to hobby. I taught myself to knit and crochet after my TIA’s, in large part to help the grip and dexterity of my left hand. I’ve taught myself to make different kinds of jewelry as well, but my hands don’t always cooperate.
  1. If I could have one day of feeling normal again I would: I don’t like questions like this, but I guess I would probably go horseback riding, maybe dancing, give my niece the piggyback ride of her life, maybe I’d rearrange or clean a room then cook something and clean the dishes that same day, because I could.
  1. My illness has taught me: It’s still teaching me to be kinder to myself. I’m still learning. I become frustrated with the things I’m not able to do (or able to do quickly enough for my tastes) and all that comes from those limitations, so sometimes I push myself too far. I am a person that relishes the small things in life, but I rarely seem to appreciate the things that I accomplish, whatever scale they’re on. I have been using words like “at least” to describe what I’ve accomplished in a day instead of saying “I have”, “I did”, and letting myself be proud of that. I haven’t yet learned to set my expectations to suit my limitations. Maybe I never will, because it feels like letting the illness run my life. Still, I’m making some progress in giving myself a break.
  1. Want to know a secret?  There’s more money in treating than in curing, more focus on profit when it comes to healthcare, and that’s a huge problem.
  1. But I love it when people: I love when someone does research and then asks me questions. Often it’s hard for people to differentiate between symptoms or events that happen with some, most, all, or just my personal experience. I don’t always have the energy to go into it all, but I prefer people to ask questions than to continue with an assumption. Someone having done some research before asking me a question, though, means not only is it likely to be a more specific and thoughtful question, but I don’t have to use up time and energy to give a basic lesson first before answering the question.
  1. My favorite motto, scripture, quote that gets me through tough times is: I don’t have one. When things are really bad, there’s no one motto, quote, or anything else that is going to get me through. Most things sound like cliché platitudes when things are so tough I’ve reached occasional cynicism. What I tell myself changes, but the basic idea is the same: keep going, focus on changing what I can, take care of myself including breaks when I don’t feel I deserve them. Rest, refocus, keep kicking back.
  1. When someone is diagnosed I’d like to tell them: Do the research, don’t just accept what every doctor tells you as law or the end all. For the illnesses I have, a lot is uncertain and more research needs to be done. If I had a dollar for every time I’ve had to explain to a doctor was APS is, I might be able to pay one of the hospital bills…But anyway. I would also tell them that they know their body better than anyone else ever will, including a doctor, and not to let a doctor pressure them into something that doesn’t make sense or feel right to you. Being scared is okay, but you need to learn to work through that and make the best decisions you can for you. Be sure to ask questions.
  1. Something that has surprised me about living with an illness is: The ignorance and prevalence of prejudice when it comes to having, not only an invisible illness, but But-you-dont-look-sickone from a difficult age. When you’re 18 and look younger, able to stand and presumably walk without assistance, and have no visual deformity, you don’t fit what disabled is “supposed” to look like to most people. Judges, strangers, even sometimes friends or family don’t understand because you don’t look sick to them. Sometimes they knew you before, what you were able to do, and don’t understand why you look the same but can’t do the same things. Not everyone is understanding.
  1. The nicest thing someone did for me when I wasn’t feeling well was: Any number of things big and small….there isn’t one ultimate act because each one of them is felt and appreciated by me. My mother has come over to clean my apartment, carried bags, run errands. I’ve had help with taking the trash out, with cooking, dish cleaning. I had people be understanding and forgiving of missed events or canceled plans. I could go on, but I couldn’t say one act was the nicest because in the moment, each is huge.
  1. The fact that you read this list makes me feel: Grateful, hopeful, cared about, and curious.

 

Do you or someone you know live with a chronic or invisible illness? Please feel free to fill out and share your own answers to some of these.

 

Counseling Awareness: 8 Things to Know to Get the Most out of Therapy

As a follow-up to my post  earlier this month concerning the traumatic experiences of sexual assault and child abuse, today I’d like to share some information about counseling (or psychotherapy) for Counseling Awareness Month (do you feel more aware this April?).

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There are some varied views when it comes to seeing a counselor, therapist, social worker, or other such professionals to help us deal with the more difficult and dirty parts of our lives.  There is still a lot of stigma and discrimination when it comes to the subject of mental health, and part of the reason it prevails is the lack of discussion about it. Most stigma can be tied to a lack of information or understanding.

One reason some people avoid seeing a counselor is the very simple reason of not knowing what to expect. There are countless tropes and jokes out there in movies, television shows, books, etc. depicting what psychologists or therapy is like (and rarely is particularly accurate).

Since I have a bit of an inside scoop on both the personal and the professional side, I thought I would share a few important things to know about therapy before you start that will help you get the most out of seeing a counselor.

8 Things to Know to Get the Most out of Therapy

Not just about venting– A big reason a lot of people end up seeking therapy is to essentially use it as a venting session. It’s incredibly comforting to receive validation and understanding while someone actually listens to you. Sometimes you really just need a session (or two) to get everything off your chest or mind, and that’s okay. Or taking a few

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(AP Photo/Bob Wands)

minutes every session to vent about something frustrating. However, what many people don’t understand is that counseling is a lot more than just venting and listening. (There is a modality that does essentially include venting or continuous stream of thought and that is true psychoanalysis, or what most people generally think of when they picture someone lying on a couch with the therapist in a chair behind them. This type of therapy does not work well for everyone). Depending on the counselor and your needs, a plan will be discussed between you and goals will be set. Sometimes there is homework such as reading or filling out a questionnaire, or an array of other things, but the ultimate purpose is to help you make the best use of your time in and out of therapy on the road to whatever goals you’ve set. Whatever else your time may be used for during a session, be sure to do yourself a favor and do more than just vent.

 

 

Not here for advice-Some clients (and counselors) are under the mistaken impression that their job in any way includes giving advice; this could not be more wrong. A counselor’s job is to help you find your own best solutions. This is why some people get annoyed with them and counselors are often “comically” portrayed as asking cyclical questions; there’s a very good reason for the reflective questions, though. Take it from someone trained in this stuff, offering advice as a professional does not go over well, and so it isn’t done. The only person that should be making decisions for you is you, and a good counselor knows that. Their job is to make you reflect and help you find your own best solutions. Counselors are there to help you figure out why you’re in crisis (if you are), the source of current issues you’re having, identifying patterns of behavior and decisions that are detrimental to you or have aided in your difficulties; they are there to help you realize what tools you’re missing from your Mental Tool Belt of Life (it’s a real thing, okay, just go with it…), and then help you learn to use them. Some people may think a counselor wants a client to come to them forever, but for a great counselor, this couldn’t be further from the truth. A client no longer needing therapy because they’re in a good place is the ultimate goal, especially if the client doesn’t feel the need to come back because they are confident enough with their own tools. That doesn’t mean it’s a bad thing if you go back to see a counselor even occasionally, think of it as the same thing as a yearly physical; your mind is in no less need of maintenance and care than the rest of your body, be kind to it.

Medicine is an aid to therapy, not ultimate solution- Except for in extreme cases, medicine is not meant to solve all of your mental health woes. There is a lot more to overall mental health than messing with the chemicals in your brain, and it’s something more people need to understand (though I have to be fair and say not all who study psychology feel this way, it’s a vast field of study). In many cases medicine can and should be used, but in conjunction with counseling therapy, not in lieu of it. Medicine is just one tool in a psychologists’ tool belt and is meant to augment and assist the effects of therapy. An example: taking anti-anxiety medication either every day or for acute instances doesn’t address underlying causes that could be dealt with through proper therapy and would make medication unnecessary. There are of course, instances where there is no getting around taking medication; schizophrenia, many cases of bipolar disorder and depression, to name a few. The point is not to use medicine as the only answer or to try to use it as a quick fix when there isn’t one.

Going to take more than one visit-While not true in every scenario (that whole maintenance thing), in most cases, it is absolutely and completely true that it is going to take more than one visit with a counselor to be of any real help. It will probably take at last 3, depending on the issues and your willingness and ability to do the work; but by the time many people actually step into a therapist’s office, they’ve reached a point that a few months to a years’ worth of sessions (or more), may be what is needed. It all depends on the individual. This isn’t a bad thing, but it is important to know before going in. Think about it, most sessions last 1-1/2 hours for the first session and 50 minutes each after that. That’s not very long for someone to help you get to the root of some of your issues and help you find your way to fixing them. Limiting that even further by going in with the attitude that it’s one visit or bust, then you might as well not. Many clients see a counselor for one visit, or even three, thinking they’ve been fixed because they might have made an important realization about themselves or got their current troubles off of their chest, or started to put things on track in their life, but for long-term mental health, it’s best to go in with the understanding that it will take more than one visit, and there is no set time. In the end it’s your decision how you use your time with a counselor, if you use it, and how long you want to continue seeing them.

Put in the effort- Again, you aren’t there just to vent. While at the end of it all the hope is that you will feel better equipped to handle things, there is a lot of hard work to get there. Believe me, there’s a reason psychologists of any level of planning to practice in psychology take the classes they do. Therapy is going to get uncomfortable, difficult, and you may think about quitting because it’s too hard and you don’t want to deal with it anymore, or any number of reasons. It’s okay to feel that way, but it’s important to keep going and put in the work, the effort. A counselor can only do so much if you aren’t putting in as much effort (often more) than they are. They aren’t here to do you work, but they will help you get through it, as long as you’re leading the way. Revisiting and reviewing your goals can sometimes make putting the effort a bit easier, especially taking the time to reflect on progress you’ve made. It can be easy to miss our own progress because we’re in our own lives day to day, and it’s only when talking with someone else and reflecting on “then” and “now” that we can see the strides we’ve made. But you have to put the effort in.

Know that it won’t be easy- Therapy can be difficult, messy, and painful. There will be tears, maybe shouting, cascading emotions, all of this and more depending on what you need and  if you’re trying to get all you can out of therapy; but this is good, because it means you’re putting in the effort. The issues that affect you enough that you are seeking help from a counselor are usually difficult and sometimes painful issues to be worked through. It can be daunting to hear the amount of work it takes to come out the other side of therapy in better shape than you were going in, but that’s the ultimate goal of every counselor, to help you through to the other side. Some people shy away and leave therapy the moment things get tough, and if you need to for a while, that’s okay, but it doesn’t make the issue go away and often will only make things more painful later on. If you’re going to start seeing a counselor, it won’t be easy, but it will usually be worth it.

There is a time to tackle certain issues- Seeing a counselor while dealing with daily life difficulties is no easy task. Seriously, there should be medals or something for those that make the attempt. But there is one very important thing to know: not all issues need to be dealt with the moment you think they should be.  I don’t really mean depression or anxiety because those are constant, evolving, changing issues. I mainly mean trauma related issues. Trauma needs to be dealt with eventually, and there are many ways to do that, but timing is incredibly important. When you’re in the in the middle of stressful times in your life is not the best time to go diving into past trauma. It does you no good to try and tackle something like trauma when you’re stressed and taxed in other areas of your life. Safety and security is vital in recovering from trauma which cannot be achieved very well when attention is split or when stress is too high in other areas of your life. I understand wanting to tackle an issue head on and fix it now, but it unfortunately doesn’t always work that way and some things are best being worked up to instead of just diving into.

It’s okay to change counselors-If a therapist rubs you the wrong way, there’s a personality clash of some kind, or if the modality (or the method of therapy a counselor uses such as cognitive behavioral therapy or CBT, psychoanalysis, anger management, art therapy, psychodynamic, etc.) being used doesn’t suit you, it’s perfectly okay to say something and decide to change counselors. Many are happy to refer you, or you can look for yourself. Some people give up after a first meeting with a first counselor that was referred to them by some obscure work acquaintance whose mother saw them….seriously, just because someone referred a counselor doesn’t necessarily mean that person will work for you. People are unique and diverse individuals so it’s natural that it may take a time or two to find the right counselor for you. Don’t be afraid to say when something isn’t working (I know, easier said than done), but no one else is there to benefit from therapy, you are. Make it work for you by giving it the best chance to. It may take some time, and it may get really annoying trying out different counselors if you’re having trouble finding the right one, but it’s worth it.

 

Do you have any thoughts or views you would like to share about seeing a counselor?