On Trump and Tolerance

•November 9, 2016 • Leave a Comment

I need to get this out there, because it needs to be said. Hopefully it will be read, and will help do something to start healing the huge, raw, painful schisms this election has created.

Who anyone voted for doesn’t really matter anymore. Trump won the electoral vote by a huge margin, and under the democratic process in this country, that is how we elect our leader. Whether it is right or good is not the point right now. That’s not what this post is about. I hope people read on, and take a moment to think afterwards.

Here’s what it is, folks. I don’t believe continuing to advocate for Trump’s reprehensible positions by being as hateful as he is will help the situation at all. Removing people for their political views is another form of discrimination in and of itself. I have a number of friends who voted for Trump, not because they believed in his moral standings, but because they saw a desperate need for change in our political system. This does not make them Donald J. Trump. They are friends I have had for years and know very well. They are not evil people who think that I, a openly Pagan, pansexual mother who supports minorities, should be burned at the stake, electrocuted until I’m straight, or imprisoned for my views. They support me.

People are not their political views. Political views are a PART of a person, and rarely WHO a person is. I do not like that Trump is the President-Elect. I like his VP-Elect even less. I am very afraid, not just for myself but for my family, my friends, and for our country as a whole. That said, this situation cries out for us as minorities to show people who ARE like Trump what TOLERANCE is. It is a concept this country is truly built upon, and a quality that must be given and shown to be taught, in the same way we teach our children the qualities and morals we want them to have. The ONLY way to combat such hate is with gentle tolerance. If hate and intolerance is met with equivalent hate and intolerance, where will we be? If we respond to fear and hate with fear and hate, are we any better than the people who spew hateful rhetoric at us? How is ANYONE to learn tolerance if it is not given and shown? How does RESPECT grow without a bed of tolerance to be seeded in?

Ignore this post if you want to. Deride it if you feel it is necessary, and go about your life. However, everyone goes with my blessings on you and for you; blessings for peace in your life, for prosperity, for grace, love, laughter, freedom of your beliefs, and a good life. Know that I wish you all the wonderful things that life has to offer with all my heart. Know that I truly, deeply hope you are never treated the way I am treated for my views. I send you off knowing I bear you no ill will, and will be here with welcoming arms if you ever want to come back. Know that I will be here to help you in your times of trial, and all you need do is ask. This is what tolerance is. It is giving respect when you are offered none. It is giving love when you are offered hate. It is giving understanding when you are met with fear.

Tolerance is contaigous. It is a slow-growing thing, but it has strong, deep roots. You cannot be touched with tolerance without it affecting you, even if it is a subtle, gentle thing in your heart, and the more tolerance hate is touched with, the stronger it grows, and the more hate weakens and passes away. Turning the other cheek is hard. It is worth it.

Think about this before you banish people for fear and lack of knowledge, or for not agreeing with your personal views in all things. Diversity makes us strong, and engenders more strength as we pass it from generation to generation through tolerance for differences in one another. Thanks for reading this through to the end. Please feel free to share this, link it, or re-blog it, just please credit me.


Rogue Waves

•October 9, 2015 • Leave a Comment

My therapist has me visualising the more intense emotional moments of this whole grief process, whatever they may be, as waves, and I am surfing them, trying to stay atop the waves, and just be present and in control of the moment, feeling and experiencing the emotion. I can’t say I enjoy this process, even when I do well with it.
I don’t want to be feeling any of this. I want to be feeling the soft joy of holding my Zora, even if it is for an hour at a time in the NICU, not this crushing, soul destroying grief that has left my life in sharp pieces at my feet, too tiny to pick up and put back together.
Nonetheless, this is what I have. Every so often, a tsunami wave comes out of nowhere and knocks me off my mental surfboard, leaving me foundering in the waters of my lonely beach in my head. My friend Jeremy named them rogue waves, and these rogue waves are atrocious things, triggers that I am rarely expecting and sometimes can’t even identify. I have two regular lifeguards at my beach, Jeremy and Shannon, who, Gods bless them, have been with me at every hour of the night and day to fish me out of the overwhelming waves and back onto my board, and listen to me, sobbing helplessly while they gently talk me back to balance. They are just quiet listeners, acknowledging my overwhelming pain, the unyielding grief and hard desire to have my baby back in my arms as I clutch the angel bear given to me by the NICU, that I keep wrapped in Zora’s blankets. Those blankets and bear are soaked in more of my tears than I can imagine at this point.
I’m struggling with a rogue wave right now, actually, have had tons of them today, because it’s Friday. 7 weeks since we lost her today. Almost two months. I hate Fridays so much. I slept today while I was alone, while the kids were at school and Jody was at work. It was too much to bear, being alone today for some reason. I probably should have left the house and done the shopping that needed to be done, but I just couldn’t manage it, so I slept. I couldn’t bear to be awake where the waves would drown me, so I slipped into the silent abyss of sleep, where my angel looks over me and is with me always, cradled against my chest, tiny, warm, and sweet, mine to hold and protect.

I always told myself while she was in the NICU that if I could just hold her she would be ok, and everything would be fine. Instead, she died in my arms, and I lost her forever. How very wrong I was.

Through the Looking Glass

•September 9, 2015 • Leave a Comment

She would have been 5 weeks old today. In two days, it will have been 3 weeks that she has been dead, and still it feels surreal and unreal and as if I have stepped through Alice’s looking glass into a strange world where nothing makes sense. How can my baby, my tiny, perfect, beautiful little girl, be dead? Someone please make this make sense to me, because I cannot make this come together in my head. I don’t blame the hospital, because I watched, hell, I PARTICIPATED, in doing every damn thing we could to save my baby girl’s life, but it wasn’t meant to be, I guess. We tried so hard. She went peacefully though. When her doctor knelt next to me to tell me she was dropping her heart rate into the seventies, I knew she was going. I knew when they told me, almost an hour prior to that, that her potassium levels were 10.6, almost 4 times what they should be. We knew her heart was going to give out soon, but we held out hope, and I sat at her bedside, crying helpless tears, begging my baby to stay with me, to fight on, not to leave me, and alternatively telling her it was ok, that Mommy was there, that I would make it ok. In the end, I think I did what was right, but my Gods, that was the hardest decision I have ever faced.
“Kelly, her heart rate has dropped. I know we discussed this already, but I have to ask you again what you want to do?”
“Get it off of her. Just get all the tubes and wires and needles out of and off of her.” It was the last thing I said without crying until after she passed, when I began having odd moments of perfect calm and clarity. The nurses gently and quickly stripped my poor, tiny, 2 pound little girl of all the tubes and needles that had invaded her miniature body, and for the first time ever, I was able to see her perfect face. A small human, formed to perfection, in miniature scale. She did not open her eyes, but I had seen them once, dark blue. Her tiny little nose turned up at the end, and her rosebud lips were parted ever so slightly for the tip of her tongue to protrude. She was so beautiful, with rounded cheeks and even a full head of dark brown hair. Her bitty fingers were long, with perfect little fingernails at the end of her miniscule hands, and feet that seemed slightly larger than proportionate for lack of body fat ended in beautiful little toes. Her father and I took turns holding her as she slowly, oh so slowly, began to slip away from us, passing peacefully into her final rest. The hospital staff gave us a beautiful beaded white gown for her to wear, and we put it on her, then wrapped her in her special purple and magenta hand-made blanket, rested her toy monkey Kicks on her legs, and she rested in my arms, beautiful, a tiny, perfect, exquisite little angel as she finally slipped into her last slumber, never to wake again, warm and safe in my arms. As we held her, before she passed, we told her over and over how much we loved her, how much she was wanted, and that it was ok for her to rest now, that she could finally stop fighting and rest easy. At 3:59pm on August 21, 2015, my little baby girl, my beautiful Zora Danae left us. She was fiercely loved, and will be so intensely and desperately missed.

Now, I am sitting on my couch, sobbing, crying so hard I can barely breathe. I don’t even really know how I’m typing this other than by rote feel of the keyboard. My heart feels as if it has broken into more pieces than I can possibly ever put back together again, and the pain of this is too much for me to bear. I want to put it in a box, shove it down and slam the lid on it, and push it to a dark and forgotten corner of my mind. I don’t want to put Zora there, only the pain associated with her loss.

So please, my friends, please understand, that even if I cry buckets, I NEED to talk about my baby girl. I NEED to share the pictures of her with you, Please ask me about her. Please bear with my stories even if you’ve heard them a hundred times, because I desperately, oh so desperately, need to feel like she isn’t sliding into the abyss of everyone’s minds, lost and forgotten, alone in the cold. No child, especially a baby, should be alone in the cold. Look at the pictures and talk to me about them, AGAIN, PLEASE. I need to know my baby still lives on. I can’t lose her. I just can’t.

Let us pray…

•October 21, 2012 • 4 Comments

It’s been a rough day. If we’re looking for fuller disclosure, it’s been a rough few months, and I’m not talking about the typical life issues; this roughness stems from stresses above and beyond the normal elements and issues of life. Nonetheless, it was today’s issues that let me to tonight’s entry, and here I am. The gritty, intensive details of the whole mess don’t need to be detailed out, but what it all led to was a call to my grandmother and father. My dad was, unsurprisingly (his job is something of true evil, no hyperbole here, and I hate that job, because it’s sucking the soul from my wonderful, gentle father) abed and sleeping, but thankfully, my dear, dear Nana was still up. I love this woman so very much. She’s so much more than a grandmother to me. She’s probably the only woman that I have any kind of maternal relationship with that actually stems from my childhood, and she’s been my School of Hard Knocks instructor more than once, and I would thank her on my knees if I could for those lessons. She has been there for me, supported me, encouraged me, and loved me when I needed her the most, and there really is no “thank you” that is adequate for that. Anyway, I’ve wandered from my topic here. Tonight, as I lay in bed and cried abject tears of fear, brokenness, perceived failure and defeat, I called my Nana, and asked her to pray for me. I think when I made the request, I had the notion of her doing it with her bed-time prayers, but my Nana, in her wisdom, chose then and there to pray for me. She listened for a long few minutes, as I poured out all my fears and sorrows through hiccoughs and quiet sobs, as I did when I was a smaller girl, with much smaller troubles. Then, with my tears still flowing, my breathing still stilted and uneven, my Nana began to pray.

Now, I’m not Christian anymore. My belief is not in the teachings of Christianity, though I hold intense and profound respect for people like my Nana and Dad who still believe and follow not a religion, but the faith and teachings of the Bible and Christ. No, I’m somewhere in the realm of eccentric paganism. I pull from this and that, traditions and beliefs from all walks, to create what is an intensely personal relationship with the Divine that is solely mine and deeply personal. That said, I believe in prayer. Be that prayer to Christ, Buddha, Isis, Odin, Cerridwen, Allah, or any other deity, I believe that there is immense and incredible power behind honest prayer. I’m not talking about the stuff people remember as kids, being forced to say Grace at dinner while your mind wanders all over the place, anywhere but to the words being spoken. No, this is the kind of prayer that is fervent and meant, drawn from a place deep in the soul. That energy, the emotion and feeling that is behind that kind of prayer? Of COURSE it does something, makes a difference, changes things. That energy is sent out into the world, and whether it goes through a higher power or a direct route I couldn’t tell you, but I know it makes a difference. I don’t ascribe to the theory that only one religion is correct, or that there is only one “True Way”. I think people have the right to the religion, faith, and belief that allows them to connect with the Divine, in whatever way It draws them, and I have a fierce respect for other faith traditions, and for the people that practice those traditions. Just because *I* do not connect to the Divine, do not feel a spiritual presence through those traditions does NOT make them less valid in any way. My Dad and Nana taught me that I did not have to agree to respect.

So, back to my story. As I listened to my Nana’s voice over the phone, curled in bed and dejectedly crying, something happened. As she entreated her God to watch over me, to grant me peace; to watch over my son and help him; to help guide his doctors in finding and applying the best treatments for him, I was able to catch my breath. I felt a calm settle over me, an inner peace. I was able to let go of some of my fears, and reminded that, as she said in her prayer, I am not a bad mother, and I have not failed my son. Did I feel the Hand of God moving in my life? Was I touched by Christ, and my fears and worries eased by Him? Did my Nana’s prayer, heart-felt and sincere as it could be, allow me a moment to refocus, and connect with the Divine in my own ways? I can’t answer any of those, but further- I don’t think it matters. What does matter is this: my Nana’s love for me, sent out through the depth and power of her prayer, helped me tonight. Her prayer helped ease my pain, grant me clarity and, most importantly, peace.

Am I still worried? Yes. Do the issues that led up to my call to my Nana still exist? Most certainly. These things don’t magically disappear. However, my Nana, one of my most important, earliest, and dearest teachers, reminded me of a lesson I learnt a long time ago tonight. Faith is important. It’s a vital thing in people’s lives. Everyone, even the most hard-core atheists, has faith in SOMETHING, and it’s what we, as human beings, lean on in times of internal crisis. There are some things that no outside source, no matter how devoted, loving, or understanding they are, can fix. Some problems must be solved from inside, some crises managed internally. For these things, we lean on our faith, as it acts as a mirror for us to assess the situation, look at it without the rose-coloured glasses (or at least less deeply tinted ones), and really resolve it. Our faiths give us strength when we think we have no more, shore up our resolve when it wavers, and steadies our steps when we falter along our paths.

Nana said she was going to pray for me again when she goes to bed. I feel so blessed to have her in my life. She is a strong woman, and so good to me. Tonight, when I called her, I wanted to feel her arms around me more than anything else in the world, to feel the warmth and safety there that was so welcome when I was a child, which could mend and soothe any injury. I wanted my Dad, to feel the security and strength in the arms that chased away my monsters when I was a little girl, my knight in shining armour that no demon could ever even imagine standing up to. Both Nana and Dad are still those things to me. There are no more monsters under my bed, and I can bandage my own skinned knee with nary a tear. No, now my demons and hurts are of a different variety, and there is none but myself who can conquer them. I know, however, that they are always in my corner, and that gives me strength beyond description. I know that, when I fall, on nights like tonight, I can call home, and even though there are almost 1200 miles between us, I can get a hug, a word of love and support, and a powerful prayer.

Thank you, Nana, for your prayers tonight. I love you.


On Tolerance, Respect, and Religion

•May 17, 2012 • Leave a Comment

Well, school is done. I officially hold the degree of Bachelor of the Arts in Anthropology, and it is still so surreal. Graduation was spectacular, and a truly awesome (in the literal definition of the word) experience. I am finding, however, that I am wanting more and more to write again. Writing has always been a passion for me, something I’ve enjoyed  and loved, and I am looking forward to getting back to it again.

Now, it’s 2012, election year. I think anyone who knows me will agree that it’s pretty safe to say that I don’t care for politics, and tend to stay away from them. Heck, I don’t even really watch the news. Of course, America being America, and having a law on the books that church and state must be separate, religion is intrinsically bound to politicians, politics, and public opinion. We’re a contradictory country like that. Granted, this in part is due to the way that religion is used within culture as a way of shaping moral and ethical structures and paradigms, but religious beliefs play a particularly hot-button role in American politics (I’m sure it does in other countries too, but I don’t know to what extent in other places. I don’t like politics, remember?) The conservatives attack the liberals, the right attacks the left, the center plays both sides… it just is so insane. Some days, I ignore it, other days, it irritates me to no end. Days like today, however, it makes me angry and sad.

I’m pagan. No, not Wicca, just pagan. I’m what is commonly called eclectic solitaire, and what I call me. I have my own unique and personal connection to the divine, and I generally do not tend to discuss the minutiae of it with most people, and don’t plan to here, either. I’m always open to questions, however, so ask away, just be aware that I may tell you that your question is not something I’m willing to answer. Sacred is sacred for a reason. Anyhoo, one of the things I believe with a great, great, great deal of conviction is something my Dad taught me (with additional reinforcement from my Nana), and that is the right of a person to choose, and to respect that right. This doesn’t mean that I have to agree with what the person believes, or accept it as my own beliefs, or even really LIKE the beliefs, but respect can be given without those things happening. Faith is a deeply, deeply personal choice, and the relationship  each person holds with the divine, however they interpret that divine to exist, is also very personal. I don’t think there’s a WRONG way to interpret the divine. I do think there are ways of expressing it that impinge on other people’s freedom, however, which is sort of what this post is about. I believe in the ubiquitous “Golden Rule”, which is present in some form in almost all organized religions known to man: treat others they way you want to be treated, and THAT is the topic of this post.

The point of my election year note above is this: I have a lot of friends on Facebook that are politically active, and a number NOT on FB as well, all of whom are more than willing to share their political views. Anyone on FB can tell you that memes fly faster than gossip on there, ESPECIALLY politically or religiously charged ones. As a general rule, I tend to stay away from both, occasionally reposting or commenting on ones that are personally significant. Of late though, as the political race is coming down to the wire, it seems that the religious war is getting more and more intense. I see more and more links to pictures, videos, articles and all kinds of things that make salient, well-reasoned points, as well as sardonic, hateful jabs in riposte to other sardonic, hateful jabs. I am ashamed to admit that there are times where I have caught myself feeding into the latter rather than setting the example that my personal faith and beliefs demands: tolerance. You see, this goes back to that whole Golden Rule thing. My beliefs, despite living in a country that was founded with religious freedom as a precept, are still marginalized and even feared. It is something that slowly is improving, but still has a long way to come. Like so many others before me, I do not believe that acceptance will come through force, hate, violence, or anger. I feel that I need instead to give what I want so dearly to be given back in return: respect and tolerance, and that this is truly the only path that will lead to actual tolerance, peace, and respect for human diversity.

That’s really a hard thing to do at times. I’m well-educated, and am reasonably knowledgeable about the basic tenets and core beliefs of most of the major religions out there, and it’s REALLY, REALLY hard for me to not use that knowledge against people when they are twisting it into some grotesque mockery so they can use their newly-twisted religion as a cover for their own ignorance and fear. It’s so hard to be the bigger person, turn the other cheek, or take the high road, as all the sayings go, and be respectful and tolerant in the face of that kind of aggressive ignorance. I don’t always succeed. I often have to remind myself of how good it feels afterwards, when I can still look myself in the mirror without shame for my behaviour and choices, in order to continue to give the respect and tolerance that I want to be given. It’s so easy to click “Like”, or make a snarky comment on, some picture or article on FB that snidely or blatantly is making fun of, lambasting, or otherwise disrespecting the religion of someone who has treated me poorly in the past. I’m not talking about the articles that present equitably the points of views of two contrasting religions, or images that simply voice someone’s opinion in a respectful manner- I think most people reading
this know exactly what I mean.

In 2011, for the Dr. Martin Luther King, Jr Essay Contest at UMSL, the theme was tolerance. I submitted an essay that took first place: a personal account of an incident that could have killed my children and me, all based on religious intolerance in the wake of 9/11. I’ll re-post the essay here to my blog, or email it personally, if anyone is interested in reading it.  The point, of that essay, however, was how a little bit of tolerance and respect on my part changed the outlook of one of the perpetrators of the attack. I found today, in a moment of reflection, that I have let that belief of mine slip away from its place in my core belief set of late, in the fervor and frenetic pace of political and religious propaganda that always happens near the Presidential Elections, and I am ashamed of that. I have friends who are from all walks of life, all religions and no religions, and by joining in with these hateful postings, however innocently irreverent they may seem, I am doing damage to people I love, respect, and cherish in my life, which violates another core belief of mine. For anyone I may have hurt, please know it was never my intention, and I am deeply, deeply regretful of my actions, and I offer my apologies, and ask your forgiveness. So, I am making this post, as well as public statement, because another of my beliefs is that some commitments should be made in the face of all, as well as to myself and my deities.

My promise is this: I will make all efforts to give the respect that I wish to receive, for respect is earned, and I should give what I expect to receive. I will do the same with tolerance, for the same reasons. I will not allow the weak excuse of “But they don’t give me respect and tolerance” to stop me from being what I know to be good, right, and correct: I alone determine my path, and I alone, in the end, must account and stand for my actions. I will teach my children, by example and word, to give the tolerance and respect that they wish to receive, and to guide, not indoctrinate, them in their explorations to determine what they feel to be good, right, and correct, and to teach them that they alone, in the end, must account and stand for their actions. I will not encourage, by word or deed, the disrespect or intolerance of another faith in any way, but by the same token will stand strong for my beliefs, and be willing and open to engage in intelligent, open, respectful discourse about differences in my beliefs and others, in the name of learning, teaching, and promoting tolerance amongst all. I will not stand by and allow myself, my family, or my loved ones to be damaged by other religions, as part of respect is respecting myself and the trust placed in me by people who give me their love, but I will not engage in this defense and protection by attacking, defaming, disrespecting, or promoting intolerance of another religion. I am better than that. I am better than disrespect. I am better than intolerance. I am better, and because I am better, I can make a better world for my children, and they for their children. One day, people will look back on this time in the history of the human race with the same shame that we look back now on the atrocities of the slave trade, and children will learn of this, lest it be repeated. I want to be part of the solution, part of the movement that is striving for that better future, and I am actively choosing to be part of it. It is a hard path, and easy to stray from, but I will always try to find my way back. This is my vow, my promise to myself.

I challenge anyone who reads this to make the same promise, whether they do it in public or private. I challenge you to make a better world for your children, for your nieces or nephews, for your grandchildren, for whomever it is that motivates you to be more than you are, to be better. The biggest change can start with the smallest step. Are you willing to take one now?

The Sacredness of Dignity

•November 11, 2011 • 2 Comments

Today, I made a foray into one of my most favourite subjects, spirituality. The Muslim Student Association on campus is putting on an Islamic Awareness Week, which is really cool. They’ve done a series of classes covering the basics of Islam, and the most commonly misunderstood facets of the religion, among them women in Islam and their clothing. Part of this included what they call the Hijab Challenge, where non-Muslim (or non-hijab wearing Muslim women) to wear the hijab for part or all of a day, to gain a first-hand insight into how wearing the hijab may affect a Muslim woman, and what wearing the hijab means. In the class they hosted, and through my own research, I learned that the hijab symbolises and means a number of things to Muslim women. It signifies thier modesty, the sacred nature of their relationships with thier husbands and Allah, and privacy. The more I read, the more I became intrigued, and I quickly began to see the truth in the statements made about privacy.

In our world now, especially in Western cultures, women are highly sexualised and objectified, even today. Think about this for a moment. All women want to be found attractive, even if only to their significant other. This has translated into an exploitation of this desire. Imagine, if you will, a courtroom. A very professional and conservative environment, where (generally) even the most base person will dress appropriately to the occasion. Now, picture the attorneys that are ever-present, and let’s say that there is one of each sex present. The man, dressed nicely in a dark suit, somber tie, hair neatly groomed, shoes shined. Now, imagine the woman. Hair perfectly and neatly coiffed, her own business suit a charcoal grey. But wait a moment… her skirt, while extending nearly to her knees, is so tight that her normal stride is restricted, higlighting each and every movement of her legs and rear under the material. Bare legs, maybe dressed only in sheer pantyhose, cut a striking line from the knee to the dress shoes she wears, the four-incch heels highlighting and emphasising the curve of her calf. The suit jacket is tailored to her curves, showcasing the curve of her waist, and the hourglass swell of her hips. Her breasts curve the upper portion of the hourglass, the fashoinably-cut top showing a hint of cleavage, with her chest adorned with tasteful jewelery that draws the eye to the exposed skin. Her face is painstakingly done up with makeup, making her features alluring and somewhat sensual, albeit mutedly so. Anyone else seeing the discrepancy here? The man cuts a strong, respectable figure, commanding that respect by his words, which everyone pays polite attention to. The woman, however. What do you think holds the attention of most of the people in the room? Her words? Or is it her legs… or rear… or the curve and swell of her bosom? Perhaps it is her enticingly made-up eyes, the painted lips? I think my point is fairly clear at this juncture.

How does this translate to me? I’m an intelligent woman, and while I’m not stop-traffic beautiful, I do think I’m attractive, but there is little that will anger me faster than someone staring at some body part while I’m talking, rather than listening to my words. While I don’t mind dressing up in clothing that is occasionally somewhat revealing, this is limited to when I’m out with in venues where this is appropriate, like a club, and only in fairly specific circumstances. In general, I tend to prefer fairly loose fitting clothing; not ill-fitting, mind you, but I’m not interested in the entire world knowing what my exact shape and dimensions are. Today, the only skin of mine that showed was my hands and face. My ears, neck, even most of my forehead, was covered by the hijab. I wore it today from the point I left the house until I came back home. Aside from my family (who by Islamic tradition are the only people who should ever see more than my face and hands uncovered), no-one today saw my hair, ears, neck, arms, legs…. anything. To be perfectly honest, the effects of that on me were somewhat surprising. I felt safe, secure, and more comfortable in my own skin than I have felt in public in some time. The one time I had to remove the hijab to readjust it, I was alone in a bathroom (I needed the mirror) and was startled by the feeling that hit me- I felt exposed and naked, and quite uncomfortable. Even more interesting than this was the reaction of others around me. I was not hit on or the subject of the casual and insulting suggestions typical of college boys even once today. Rather, I was treated with greater respect by strangers than I can remember at any other time  among my peers. My words seemed to be more carefully attended, and given more weight and consideration than usual. I will readily admit that some of it may have been my own perceptions, however some of it was definitely objective experience. It was wonderful, and amazing, and my day was so much less stressful than normal.

At the meeting this evening, a gathering of the participants of the Hijab Challenge, we sat and discussed and reflected on our experiences of the day. The responses from others were similar to mine. We all noted an increased of respect from others, a notable sense of feeling more comforatble in our own skins, and a feeling of self-confidence that was new for many, if not all, of us. Now, I’m not converting to Islam. I have a great deal of respect, a reverence even, for other people’s faiths and religious preferences, and I would never make a fake proclaimation like that. My personal beliefs are what factor into my own faith, which I broadly define as pagan. However, the hijab, and what it stands for, are things that resonate very deeply for me, on very personal and spiritual levels. For right now, I think I’m planning on adopting the hijab, and wearing one daily. From what I gathered, other Muslim women (in general) would not take offense to me wearing a hijab, because it resonates and means the same things to me as it does to the women who wear it as part of their Muslim faith.

To the MSA of UMSL, and specifically the Muslim women who presented and facilitated this, thank you so much for the opportunity to explore this, and learn so much about something so personal to you, and thank you for sharing something so sacred with me. I have a profound and deep respect for you all, and for your faith, and am honoured to have been able to have shared it with you, and to have found this connection between us all.

salaam alaikum


To be a spoonie

•May 6, 2011 • Leave a Comment

Today is a rough day. My head is throbbing. My joints ache. My skin is on fire. I’m utterly exhausted, and just the thought of doing something so strenuous as walking to the bathroom makes me want to cry. I refuse to give into this though. I went to a movie with my partner today, and I’m going to cook dinner tonight. I took a shower, and got dressed. I used up all my spoons just getting out of bed this morning. I’m owe my body so much right now that I don’t even want to think about it, so I’m not going to.

I think most people, however sympathetic they may be to a person with a chronic pain disorder, can’t even begin to grasp what it’s like to truly live with one. I saw a post on Twitter the other day about being a “spoonie”, and was mysitifed, so I set about with my Google-Fu to discover what this “spoonie-ism” was. I found it. It’s a brilliant explanation by one woman who lives with Lupus, among other things, to one of her oldest friends, on what it is like to live with this. It’s a great metaphor, and you can read it here. We call ourselves “spoonies”.

My life is like that. Every day, every moment really, is a constant evaluation of how many spoons I still have left for the day… and often of how many I owe. Life doesn’t always allow for me to finish the day with a positive, or even, balance. Most days, I owe spoons. Lately, I think my body has decided to start collecting on the spoons I owe it.

I’ve been working, for what feels like forever, but has been about a month, with a headache that just won’t quit. Nothing is stopping it. There was even a trip to the ER, with a well meaning but mostly useless doctor, but it all has been to no avail. It won’t stop. I’ve gotten breaks here and there, but never for long. I think the longest I’ve gone without this headache has been 45 glorious minutes. Aside from the headache, my fibro has flared with a vengeance. Today, the pain isn’t too horrid, but it’s been about a month now that this flare has been ongoing, and I’m beginning to lose the memory of what it was like to have my pain at a less-noticeable level, where I could still function and work without having to stop to catch my breath regulalry.

I do get the “but you don’t look sick” look from people. They look at me, and I can see the doubt, the skepticism in their eyes. I can understand that. I appear healthy. I am slender, and fairly fit. My colour is good, and I appear to have energy. I think there are a very, very few people who understand just how exhausted I really am, or how much pain I’m actually in. Happily, all of those people understand that I don’t want to be treated like an invalid, nor do I want to be asked a million times if I’m ok. I’m not ok. I’m very rarely ok. However, as I live with a disease that most of the medical community doesn’t even acknowledge truly exists, my state of “ok-ness” doesn’t really matter.

It’s frustrating to have to try to figure out how much of my medical history to tell a doctor. To have to feel them out, to decide if they are receptive to fibro as a legitimate diagnoses. The ones that aren’t inevitably want to tell me it’s all in my head, that I’m somatising, that it’s a psychiatric disorder. The ones that are usually want to put me on a medication that I, lacking any form of insurance whatsoever, can’t afford. It’s a lose-lose situation, one that I think most spoonies have to deal with.

So, we go on. Day by day, minute by minute, we live our lives. No, we don’t look sick, because, well, we’re not. I’m not sick. I am, however, in pain and exhausted beyond belief, most days. I truly cannot remember the last time I had a full 24 hours without pain. I cannot remember the last time I truly felt well-rested. This isn’t meant to draw sympathy or anything like that. I don’t want or need anyone’s pity. This blogging, this posting, it’s a way to cope. A way to vent the frustration, the anger, the irritation- at an enemy that doesn’t care, can’t hear, and is ruthlessly vicious.

May is Fibromyalgia Awareness Month. Seems we’ve a month for every kind of awareness there is. Probably not a bad idea. I don’t know how much use it actually holds, but well, it’s a start, I suppose. So, this post is my contribution to this effort. So, to all my fellow spoonies out there, near or far, hang in there. Enjoy the good days for all their worth, and squeeze every precious moment out of them. Let the bad days go as much as you can, and don’t ever, ever, ever let them win. Acknowledge the pain, the exhaustiong, the depression, and then move on. Find your serenity somewhere, and cling to it. There will be a silver lining to the dark days. The sun will come out again. Bask in it when it does, and hold onto it for when the dark days come again. I think the upside to being a spoonie is this: We appreciate the sun like no-one else can, for we know its worth, and pay for it so much more dearly than others.