Badassery Redefined

Fearless-woman

I fell on my face, numerous times. I have made mistakes. Little mistakes that could easily be swept under the rug with a sigh of relief while no one was watching. And big ones too. The kind of mistake  that makes you fear that life-as-you-know-it will be over the minute you have to fess up, or that it will cost you your job, which basically amounts to the same thing when you have bills to pay and no better prospect in sight.

I have been hurt too many times to count. But I have hurt others as well. Mostly unintentionally, of course, but sometimes out of spite or retaliation. An Eye for an Eye is a tempting proposition when  you’ve been kicked in the face. I can be pretty quick on the trigger. Shoot first, ask questions later. That is what I thought being badass meant. I realize now that I was wrong all along.

Being badass is being able to admit your mistake and do whatever you can to fix it. Being badass is being able to say you’re sorry when you realize you have hurt someone or being able to express to someone that they have hurt you. Being badass is getting back up and marching on when you’ve fallen on your face, yet once again. Being badass is standing on the rubble and asking “Ok now, what’s next?”.

I feel like such a fraud for I have tried so hard, and for so long, to hide my struggles for fear of appearing weak.  I have spent so much time and energy listening to and trying to shut down that little voice inside that kept repeating “Come on! Who do you think you are? You’re not good enough. You’ll never be good enough”.  I am my worst enemy, my worst critic and my own executioner.

What if, instead, I decided to show up and jump in? What if I decided to shut down the critics and naysayers once and for all? Back off now, I am who I am as a result of my own decisions, good or bad, of the love offered or rejected, of the friendship granted or denied. I am the sum of all of life experiences, expectations, dreams and falls.

I am sick and tired of people telling me that I am putting too much pressure on myself and trying to do too much. The way I see it, the moment I am giving up on my dreams and goals, I am giving up on myself. I do a lot, because I can. I am slowly learning the art of releasing the pressure when it gets to the point of near eruption. It is an art, really, to balance the overwhelming sensory input with my limited neurological capacities, and to navigate between my need of introspection and solitude with my yearning for connection and love.

The bitter irony of being autistic is that we live in a world we try desperately to fit into but find excruciatingly overwhelming, while anxiously waiting to connect with people we try to avoid.

I am but a paradox… hell, I’ve never pretended to be perfect. But badass, I am…

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Awareness or Acceptance Day?

infinity-symbol

Today April 2nd is the World Autism Awareness Day or, as many autistic adults preoccupied with semantics are trying to promote now: World Autism Acceptance Day. The claim is that they no longer want the general population to simply be “aware” of autistic issues but would rather be accepted as they are, with the good, the bad and the ugly side of autism. When I say “they” I should really be saying “we”, but I have concerns over the whole debate, or should I say, over the lack of cohesion within “my kind” of people and where I stand on the issue.

It has been two years since my official diagnosis of Asperger’s. I have been through the ups and downs of assimilating the notion, understanding its ramifications, discovering who I really am and negotiating my daily struggles. I have learned to take in stride the frustrations of disclosure, the ignorance that prevails about life from a different perspective, and the judgments issued from preconceptions about what an autistic should or should not look like. If I had a penny for every time I heard: “You don’t look autistic, it must be a very mild form of the disease”… well, I would no longer have to buy lottery tickets.

I have joined, and since quit, many support groups discussing our issues, hoping to find solace in kinship. Unfortunately, as it turned out, some of these groups were nothing more than a series of ranting posts about how life was unfair and how we are being victimized and misunderstood on a daily basis. I had to make a choice. Either learn to live my life on my own terms while learning to cope with the outside world (we all live in the real world, right?) or sink into the abyss. It is very hard to throw a life jacket to someone while you are drowning. I chose to get back on the boat. I have no intention of playing the martyr and I do not aspire to sainthood.

And then, there are the recruiters, you know, the ones that go around flaunting their autism as a glamorous way of being so different than anyone else that they might as well just create their own planet to go live on, happily every after.They will accept anyone in the group that think, maybe, might perhaps be autistic because they feel the psychiatrist diagnosis is just wrong. Unfortunately, while it is true that a lot of Aspergers (Aspies) were wrongly diagnosed in the past, one might want to consider the possibility that she is just nuts. Just saying. I have someone particular in mind, of course. If you have to ask a group of Aspies what they think on any issue, how they react in some situation, what should they pick as a career, what they should say, what they should do, etc. then maybe you’re not in the right group. There is no manual on learning to be autistic to fool your psychiatrist, sorry. You’re either autistic or your not, there is no in between, no maybe, no learning curve. Take your pill and move on.

It sounds harsh, I know. Tough. I am sick and tired of the wannabes. There is nothing glamorous in trying to function through a meltdown or having to perform when your brain is so overwhelmed that it completely shuts down and you feel like your whole world is crashing down on you. There is no magical tricks or infallible recipe to claw your way back up, you just have to do it. If you want to survive, you have to learn to swim back to the boat.

Autism is often associated with savant skills, superior intellect and genius abilities. Many examples through history such as Thomas Edison, Leonardo Da Vinci, Albert Einstein and Bill Gates have shown that the autistic mind has permitted technological and scientific leaps beyond expectations. The psychological burden of living up to that claim is unbearable. If I fail to create a masterpiece, solve a mathematical equation or even write a best seller novel, does it mean that I have failed as an autistic mind? I was curious about how we rate intelligence and took the test online. The IQ test gives you a rating based on standardized questions, which kind of defeats the purpose of assessing a non-standard operating brain. Again, it is all a matter of perspective, and just like age, is nothing but a number. It doesn’t matter if you score well above the “gifted” baseline if you don’t know how to harness that power and if your brain doesn’t show up when you need it to. My most brillant ideas come to me at the most inopportune time and I’m still trying to figure out how to best take advantage of that nuisance. If anyone has a clue on what to use to write on a glass shower door when wet, please let me know.

I won’t participate in online discussions about imagery either. Some use the puzzle piece and the colour blue to promote autism while others reject it because of its link to the controversial Autism Speak organization. Some have started to use the rainbow colored infinity symbol and others are still trying to define what the image should be. What is my symbol of choice? It evolves, just like me. If I had to chose one, it would be the silver infinity one above, for I am strong and shiny. I might melt a little under a lot of heat, but I won’t break. I doesn’t matter where I started or where I will end. I am an endless loop that can curve gracefully. Synergy is rarely accomplished in a straight line.

But symbols are nothing more than a visual representation of an individual perspective of an idea. I am not autism – I’m autistic. It took me two years to be able to say the words out loud and not mumble them as if I had a rare infectious contagious disease. I am not sick and I don’t consider myself disabled. I have certain challenges, just like a ton of people I know. My brain functions on a different operating system, that’s all. Autism doesn’t define me, but is a big part of who I am. I have to accept what is. I don’t get to decide to not be autistic tomorrow morning because it is not convenient. Then, I have to pick a side. I either stay in the water and complain about the waves and the cold, or I get back on the goddam boat and try to warm up.

Perfect Imperfection

headbanging

It has been a while. I was waiting for inspiration on the perfect subject to come to mind. I wanted to improve on my grammar, increase my vocabulary répertoire and define my style before writing anything else. The thing is, nobody else cares but me. And that’s fine. It doesn’t need to be perfect. I’m not perfect. I’m the one that paid for this site anyhow, right?  I started this blog to jot down ideas and work through some issues pertaining to my diagnosis with Asperger’s. It’s getting old. I feel there is nothing I can write here that has not been written before.

Executive dysfunction, check! Fine motor skills issues, check! Sensory Processing Disorder, check, and check again! Meltdowns and Shutdowns, done! I read it all, get my ah moment, and move on.

I wanted to take things ever so lightly and be funny, you know, the kind of sarcastic humour I often embarrassingly display in public but that nobody gets, the Sophie Kinsella kind of outrageous humour. The thing is, all of it has not been that funny at all. I hate being ridiculed. I just can’t see how my pangs and my tripping down or up the steps will help anyone else make sense of it all.

There are days where I feel proud and privileged to be amongst the first significant wave of female autistics being diagnosed as an adult when so many others were ignored or missed in the past. There are days, of course, where that burden is a little much to carry. So few have been through before me that it makes it difficult to anticipate what’s coming.

Many other women are being diagnosed while undergoing diagnostic tests because of their children’s difficulties in adapting either in a social or school environment, or both. I, on the other hand, having no child of my own, have looked for answers following a dramatic increase in “symptoms”, or rather a reappearance of autistic traits I had unknowingly worked really hard at hiding from the rest of the world in an attempt to fit in.

I now find myself pouring over research papers for an explanation, but unfortunately, none is being offered. Hormones? Maybe. Aging brain? Could be. The scary part is, no one knows. I sometimes find myself having to stop in the middle of an hallway, take a deep breath and try to think of where it is I was going. It goes like this: “Ok, today’s Monday, I have class on Mondays, at 11:45. I’m in the hallway at the university, so obviously I must be heading to class, the timing seems right, where’s the class again? oh yes, up the stairs here, to the right, ok, you can breathe now, and head for the steps, and careful not to trip on the way up!”.

I have taken steps to protect myself. I now wear a MedicAlert medallion on my charm bracelet indicating Asperger Syndrome and added to my file that I might experience difficulties communicating in extremely stressful situations. It feels more like a dog tag than a badge of honour, I assure you. But it is what it is. Better be safe than sorry. Overreacting? Hardly. I have been in situations where, if two people talk to me at once, I get totally disoriented and cannot utter a word.

Sounds funny? Not really. I never know when I get up in the morning if my brain will kick in or remain in shutdown mode until it has finished rebooting. When it kicks in though, watch out! I’m in for a ride! If I had taken the time to write down everything that goes on in there I would probably have enough material to fill in a small school’s library. On the other hand, on “recuperation days”, I have just enough energy to remember my name.

It has taken me a while, but I’m finally getting it and accepting the good with the bad. I refuse to impose limits on myself and will continuously push them back, knowing that I will bounce back at some point.

It’s all relative…

Family tree, relatives, people silhouettes

“Family like branches on a tree may grow in different directions yet our root remains as one”  — Unknown

You would think that because siblings came from the same root that they shared a special bond. However, any relationship that is worth entertaining should be based on mutual respect and understanding. Unfortunately, just because you share common blood or DNA does not necessarily mean that you share the same values or beliefs.

Psychologists and religious groups proclaim that family is the most important relationship in anyone’s life and is sacred. Who else than your own sibling could understand you better? Sprouting from the same root, living under the same roof, sharing toys and clothes. Why would anyone not be enthralled with every little mistake they ever made thrown back in their face at every opportunity, just for teasing? Why would anyone not be so relieved to get constant and relentless advice on how to do things better? I wonder.

My root is gone. It has rotten in its own misery and drowned in an incessant rain of drama, self-pity and blame. What remains from my tree I’m afraid is an overgrown branch casting a shadow on my budding leaves.

Just because you once shared a double bed for lack of space (and privacy) doesn’t mean that you shared feelings or experiences. Whatever choices you made and path you followed ultimately determined who you were going to be.

I have made tons of mistakes, most without huge consequences. I have made dubious choices, taken wrong turns, but somehow always managed to make it back on the road safe and sound. I am proud of what I have accomplished so far and feel like there is so much more left in me to give. I am grateful for every little thing, for my aching and aging body to still carry me forward, for my never-give-up attitude, for my determination in finding an answer and solution to every challenge presented. I will prevail. Just watch me.

Most of all, I am grateful for the unconditional love and support of my noisy and sometimes annoying husband of 20 years. I am grateful for the wonderful friends I have made along my working or traveling journeys, you know, the kind of friend that doesn’t care about your past mistakes, the kind of car you drive, how clean your house is or how much money you have in your bank account (yeah Ruth, I’m talking about you).

I am my past, my present and I am also my future. I am the sum of all I have lived through, lived past and living now. To have a meaningful relationship with anyone, you must not only understand where they’re coming from but also where they are going. If you’re not mildly interested in what I have to say, then don’t bother with the conversation. It’s a waste of my time, and yours.

Love shouldn’t be a one-way street. You can’t say that you love your family if they don’t love you back just because, according to social conventions, you ought to. Loving someone, to me, is respecting their need for space, comfort when necessary and a soft blow on their wings as they take flight to give them a push.

There shouldn’t be any competition amongst siblings on who’s got more, who had it the worst or the best, who’s right and who’s wrong. If you can’t be friends there is absolutely no point in the cruelty of having to put up with one another for the sake of doing the “right thing”. In the end, as I recently found out as I lost one of my best friends, my mother-in-law whom I loved deeply, all evidence of our physical presence ceases to exist. We become nothing but a pile of stuff to be divided and a pile of ashes to be buried. What is left of us though is the intangible memory of the moments we shared and the love we had for one another. To me, that is family, whether related by blood or not.

Sharing good times because you want to, because you love, respect and understand each other. Not because you have to. Then again, it’s all relative…

Being different is NOT being defective

overwhelmed

Being diagnosed as autistic is one thing. Learning to live in everyday life with autism is quite another.  Here is an important lesson that I am trying very hard to acquire.  My very survival depends on it.  And if you think I’m exaggerating, consider this…

There is a myriad of prejudice surrounding the subject of autism, its probable causes, its treatment options available, their effectiveness, the possible or impossible workplace integration of autistic individuals, their access to education, to a successful love life, or the possibility of a social life.  We’re talking about it as a brand new phenomenon or as the diagnosis du jour whenever we fall short of finding a plausible explanation for a different behavior pattern.

We’re experimenting with new concoctions to find the miracle drug that will reduce or rescind its symptoms.  We create new education programs to promote “normal behaviour” and integrate children to society to ensure they become productive and independent members.  We discuss their problems, we send them to therapies, we compare them, classify them and we want to cure them to alleviate their suffering.

But the question is: who is really suffering?  As I am discussing with members of my own family, with work colleagues, and as of recently with professors and fellow students, they mention my disease, my condition, my issue.  Words do matter. Where is my problem anyway? I do not suffer from a disease, nor am I afflicted with a condition.

I was born autistic, and I will die autistic.  It’s as simple as that.  I am who I always was, I didn’t change, and I didn’t become more autistic then I ever was prior to receiving the official confirmation on a piece of paper.  Period.  What changed is my perception of the  world around me, of who I really was, and the realization that I have spent most of my life underestimating my abilities and potential.  What also changed, is my naiveness in believing that people were actually interested in understanding.  We expect that autistics will learn the tools necessary to adapt to society at large, because being different is being defective.

My refusal to use chemical means to regulate my mood is perceived as a denial over a logical solution to my issues.  As far as I’m concerned, it is often in moments of deep introspective reflection that I come up with the most brilliant ideas, and in the clearing of the mind after an overwhelming stream of tears that my vision and dreams become more apparent.

People are constantly making comments about my unstable mood, about my being too sensitive to criticism and that I look stern.  Yes, my moods vary and it is easily detectable in my face or body language when I’m frustrated or having a bad day.  So what?  I’m not a hypocrite, what you see is what you get.  Yes, I am sensitive to condescending criticism when you think my opinion on a subject is any less valid than yours or when I feel that I am being treated unfairly.  I am honest and fair, values that I fear are becoming extinct in our day and age.  And yes, I look stern, and I am sick and tired of trying to explain that the neurons controlling my facial expressions just function differently.  I have to make a conscious, intellectual effort to chose the correct expression to put on my face.  It doesn’t come naturally for me.  So, if my brain is busy thinking of something else, my facial expression might remain on “neutral” until I realize I have to change it.  There you go, end of explanation.

My desire to acquire and develop new skills to reach my potential and realign my career from numbers to words, with the ultimate goal of working from home where I can control my immediate environment, is also being put under scrutiny.  Midlife crisis or necessary adaptation for my intellectual survival?  I was once again too honest about expressing my dream of adapting a new lifestyle to meet my needs.

I’m very good at my current job as a risk analyst and would be considered a model employee if it were not that I demand a reasonable adjustment to my current work conditions to function better.  I am very detail oriented and can decipher discrepancies other, more experienced underwriters  would miss.  My focus is seriously compromised though in an environment where visual, auditory and olfactory distractions are repetitive and constant.  I should simply accept the fact that I have to sit in an open, heavy traffic area, surrounded by over perfumed gossipers, because, after all, I’m the autistic one, the one with the problem of being too sensitive.

I must admit that I am a bit confused with the mixed messages I receive.  On one hand, I’m being told that my coming out with being autistic is a courageous move (I’m simply stating who I am, no courage involved in that statement), and I’m told that I just have to ask for help and support (see the visual effect here: head to the side with hush puppy eyes), followed by prejudiced comments I won’t dare repeat.  Being different is being defective, they made it quite clear.  On the other hand, they view my academic endeavour as a clear break with my actual job, they write me off from the annual planning as if I were already gone, and they justify the inertia to respond to my request for a better suited work station with the statement that I will be gone in nine months regardless.  Really?  Did I really confirm that I was leaving?  I had no idea that the decision to write me off had already been made before I even had the chance to schedule my classes and see how many hours I could still devote to work.

Therefore, it seems, it is up to me to come up with an action plan.  Apparently, I have to find a new job come September because it was already decided for me that I would no longer work where I am.  In the meantime, I must have a irreproachable performance, meeting all the targets I was assigned, regardless of the obstacles I encounter, because, after all, it is my problem.  I must also have a great, positive attitude, smile from ear to ear (maybe a reminder on my phone would help).  After all this great pretending, I have to find enough energy to go home, deal with homework, be a good wife, figure how Martha Stewart could do it all, cooking and organizing (I hope she was able to rest a little in jail, poor overachiever), exercise for better sleep, call my friends and family to catch up and tell them how wonderful my day as been chatting with the over perfumed gossipers.

Sorry for all the neurotypicals reading this, only an Aspie can understand how ridiculous such an action plan would be!

Despite all the frustrations experienced facing the misunderstandings and lack of interest, and the pressures to conform to the “norm” (defining normal is an impossible task), and regardless if the obstacles in my way were set on purpose or not, I will not be sorry for who I am, with my mood swings, my great sensitivity and my stern expression.

I was born autistic, and I will die autistic, that is who I am.

Being different is NOT being defective.

Aging on the Spectrum

aging

This week, for no particular reason, I was overwhelmed, a lot. I happened to mention to a colleague, who is aware of my ASD, that the noise level in the office was intolerable, and that I was having a hard time coping. She replied that my sensory issues just seemed to be getting worse.  This hit a spot, since my sensory hyper sensibilities are the main reason why I went looking for an explanation, then a diagnosis, in the first place.

It made me wonder if  it was simply that I was now more aware of my difficulties or if they were really getting more challenging. It just seems like every single day is worst than the previous one. I get up tired, not fully refreshed, get ready to face yet another day and end up crashing on the couch in the evening, totally exhausted. My body is also starting to scream for help from the lack of sleep and chronic stress and anxiety.

In order to maintain some type of functional behavior before I can quit the office environment in a downtown busy city for the comfort of a home office, designed with peace and quiet in mind, I resolved to the purchase of custom-made earplugs designed especially to reduce the noise level by up to 25-30db, allowing me a better focus and performance. I will find out soon if they can really make a difference, and will try to maintain some sort of composure in the meantime.

Coincidentally, someone has posted a similar comment on a social media support group this week. Many more supported the idea that their traits are getting increasingly more pronounced as they are getting older. Being the relentless researcher that I am (I call it my pit-bull behavior), I initiated a preliminary research in the matter. Are Asperger adults getting better at coping as they age, or does it get so much worst that they retreat from social interactions into isolation? This is concerning, and I found nothing so far.

The studies report some improvements working with kids through cognitive therapies, but nothing was mentioned about adults diagnosed later in life. Maybe therapists assume that, since we have made it so far, we can manage the rest of the way. I found nothing either about the hormonal changes, specifically for women experiencing perimenopause, and its effect on the sensory processing parts of the brain. Are we really the first wave of fully diagnosed adults aging with ASD? And if so, shouldn’t we stand up and try to make it easier for the ones that will be diagnosed in years to come?

I despise unanswered questions, and will do whatever necessary and feasible to find explanations. I’ll even publish my findings and arguments.  I welcome any comment, suggestion or collaboration in finding out how to age well on the spectrum.

Free at last

freedom2

Getting diagnosed at 44 is daunting.  There is a part of me that feels like I have wasted basically half of my life feeling left out, out of sorts, ignored, neglected, invisible. Then there is the side that is amazed and bewildered.  Amazed that I have survived and to a certain extent having thrived despite my until now unknown challenges; and bewildered by the possibilities that my life now holds.

When I first read accounts from other Aspies that it took them a year or so to go through the roller coaster of emotions of diagnosis and the discovery of who they really are, I thought “Pfft! It will never take that long! I’m fine with it!” Well, I was wrong. As much as I thought I was fine, there is a similar process we seem to go through as adults that simply cannot be bypassed.

There is the relief at first, the explanation for a lifetime of heartaches and loneliness, the elation to finally belong somewhere, and the hope that, finally, others will understand you.  Then comes the regrets, the realization that you may have made wrong decisions along the way and hurt others, or yourself, though you didn’t mean to.  You go through every childhood trauma, every lost friendship, every humiliation, bullying or abuse, all over again, but this time with a different perspective, and you can’t help but wonder how your life could have been different had you known before.

Once you’ve gone through that painful process comes the … “ok, now what?” and you read. Blogs, books, posts on social media, anything you can get your hands on to validate that you’re at the right stage, at the right time, and confirm that you will be all right. Your best friends (the few that you have) and your family try to reassure you.  Since you were always autistic but just didn’t know it, it shouldn’t change anything, right? You’re still the same person, after all.

I read the most recent book by Cynthia Kim “Nerdy, Shy, and Socially Inappropriate” and what stayed with me all week the most is when she wrote that “she had to learn to be autistic”.  To me it says that I have to learn where my limits are, how far I can push them, when it’s time to call it quits before a full-blown meltdown, and how to recover when you pushed the boundaries a little too far. The recovery part is the most challenging to master, and I am wondering if I ever will.

This week was particularly difficult for some unknown reason.  I started writing this post early in the week, determined that I was going to catch up, translate all the previous posts onto my French version of this site, add some references, update my bio, the works. Then my phone rang and I decided to take the call. I hate the phone. I would not talk on the phone ever if it was not an unfortunate part of my job to do so, or if my sister and my dad lived closer. There is insufficient time to think before I have to articulate an answer, I never can figure out when it’s my time to speak and invariably end up in a monologue about my many projects and ideas because I simply don’t know what else to talk about. What I should have said or asked comes to me after I hang up. Obsessing about conversations and how I should have done better is what I do best. After hanging up I looked at the screen and my mind went absolutely blank.

I rejected the premise that I was disabled in any way. To me, being autistic simply meant that my brain might be functioning differently, but functioning nonetheless. I realize now that brain function can be seriously compromised when sensory overload kicks in. I braved the crowd to go buy a gift for someone this week. In true Aspie fashion, I knew exactly, before I headed out, what I was going to get, where to get it, and how to get there. Easy enough. I always select small boutiques as opposed to big, bright, loud and crowded department stores. I waited for the day of the week when I thought I was able to handle it.

I got to the store before the lunch hour rush, picked up the basket of goodies I was buying and turned around towards the cash register. There were three women working in that small boutique that day, one of whom proceeded to explain ALL of the promotion items they had going, while another was asking me if I wanted the basket gift-wrapped, then the third ringing the sale was asking me if I was interested in the privilege card, explaining all the discounts I could get for this and all future purchases. Then it hit me. I could barely mumble. I totally ignored the promotion lady, faintly nodded yes at the gift wrapping one, and nodded no at the privilege third, while handing out my credit card. I couldn’t get out of there fast enough. Walking back to my office was a blur, and it took me some time before I could even look at my computer screen to start working again.

I guess I am disabled after all, as painful as it is to acknowledge. The worst part is, it is not visible, and I can’t find a way to explain it to others in a way that they can respect or accommodate my need to recuperate. It is frustrating to me that no one can see the effort that I have to put in every day to function in a world that is increasingly loud and crushing. I feel a great deal of shame and guilt when I have to spend my weekends hiding out in my home, trying to restore some energy to face the upcoming week.

No, learning to be autistic does not mean that I have to give in or give up, on the contrary. I have not changed. What has changed is that I am no longer willing to pretend to be someone I’m not, and that despite the fear of being viewed as weak or “defective”, I am who I am because I am autistic, because I am different, and THAT is liberating. Free at last!

Lemons & New Beginnings

lemons

As many Aspies, I tend to take things quite literally. I have a difficult time making sense of some old expressions, even if I know what they mean. For example, I know that “letting the cat out of the bag” means revealing facts previously hidden, as per Wikipedia, but the words make no sense to me. My first reaction is: why would someone put the cat in the bag in the first place?

I thought long and hard about another expression this week, as one more challenge presented itself.

When life gives you lemons … make lemonade!

OK, so, the words don’t make much sense either. How can life give you lemons? Beyond the words to the meaning, there are two ways to look at this one. First, you can take it to mean that, even though it seems that you can’t catch a break, you try as hard as you can to make the best of it. It is a noble thought.  Accept what is, and move on.  I prefer the second, more daring attitude: when facing what seems like another setback, overcoming it can become one of your biggest and most inspiring accomplishments.

The verdict is in, I experience fibromyalgia pain.  The widespread, constant and overwhelming pain is quite exhausting during the day, and waking me up in the middle of the night.  The thing is, it didn’t appear in my life overnight, but showed its face once in a while, in different ways, which I ignored for fear that if I paid any attention to it, it would simply stay and never leave me. I say “experience” to avoid the finality of “suffer from” or “have” as I do not believe that I have to carry this pain through to the end of my life.

No study reports the same conclusions as to its causes, or even its symptoms, and nobody seems to agree on ways to deal with it, “treat” or “cure” it. There are several theories about the causes: hormonal (since the majority of those affected are women), genetic (it seems to run in families), or it could be related to trauma or excessive stress. I tend to believe that it is a combination of all of the above.

Whether it showed up fiercely at a period in my life when I was a bit confused and overwhelmed with my recent diagnosis, overstressed with the legal battle with the contractor since buying my property, challenged with the changes in my body entering early menopause, or simply as a result of years of entertaining bad habits like smoking, drinking and eating questionable food (I really think chocolate should be a food group of its own), the fact is, I have to deal with it, now, if I am to enjoy any quality of life.

Again, the medical establishment has but one solution for relief: antidepressants.  I was assured that the dose prescribed for fibromyalgia is much lower than for clinical depression (25mg-40mg as opposed to 200mg), and I was perceived as a stubborn masochist for not jumping on the opportunity. Shouldn’t it be my decision?

Researching it proves to be more confusing than beneficial. There is definitely a link between the high stress and anxiety experienced by people with AS, as per my many conversations in the online support groups I belong to. So my plan has to start from there. Tying into my project of developing a yoga program designed for adults on the spectrum to help reduce their stress and anxiety levels, I can also create a program for pain management.

Many report that their efforts towards better nutrition have helped tremendously, and I can certainly use an overhaul in that area, step two covered. But I don’t intend to stop there. I am realigning myself towards learning  to live in the moment, surround myself with supportive allies, and share my experience with as many people as possible. If I can offer relief and encouragement to only one person, my life just made sense.

Sharing ideas and exchanging experiences with fellow Aspies this week, I realized that I was not alone feeling that my life is barely beginning. Now armed with the missing piece of the puzzle, discovering who we are and  what we’re really capable of, we are bruised, somewhat broken by misunderstanding and misconceptions, but not defeated.

I intend to use all my lemons and make the best lemonade! Cheers!

Sanity Now!

sanityI took a day off.

Yes, I do feel guilty about staying home today, but it was either that or bite a coworkers’ head off (or worst, a client’s), for nothing, due to a lack of sleep and inability to cope with the incredible physical pain that has been crippling me for the past few weeks.

So many thoughts are rushing through my head, much faster than I can type them, so bear with me.

One of the most famous quotes in history, by Ralph Waldo Emerson “Life is a journey, not a destination”, is so cliché. I’m stuck in the journey. All my dreams and goals wrapped up in other people’s decisions. Everything seems so close, but at the same time, out of reach. And I’m holding on, barely, much closer to the edge that I would care to be.

Will I be admitted to university, in the ultimate attempt to graduate with new skills allowing me to change my work life? Well, it depends on the heads of the program to see the potential in my admission papers. It is a huge leap, going from the dry and boring financial sector to the more technical, but yet creative world of translating and writing. I really do believe that I’ve got what it takes, but as past experiences have demonstrated, lack the ability to sell myself appropriately.  The wait to find out is simply agonizing.

Will we sell the condo and be able to move in and settle comfortably in our new home? Well, it depends on the potential buyers out there willing to embrace the concept of community living despite all the bad rap it has been getting lately.  We need peace and quiet.  Most of all, I can’t deal with the responsibility of making decisions for the six units because the individual owners do not want any part of managing it, but yet find the time and energy to complain about everything. A big part of my AS traits is the strict adherence to the rules and regulations. I therefore get extremely frustrated with the total lack of respect of other owners or visitors not abiding by no parking signs, not respecting the building rules, and doing whatever they want. My sanity depends on defining my own space and not letting anyone invade it without my permission.

Will I find a way to ease the grueling pain, or find the appropriate help? So far I have talked to three doctors, one of whom told me that Asperger Syndrome does not exist (because it was taken off the DSM IV as a mental disorder — of course it was!) and thinks it’s a dangerous label that psychologists or psychiatrists like to pin on people. The other told me that I was inventing imaginary pain in order to “find myself a disease” when I suggested I might have fibromyalgia (of course, because fibromyalgia is the disease of choice!), and claimed that I was simply clinically depressed, going as far as giving me symptoms I didn’t even have!  I had to try to convince him that I was not, but he didn’t buy it.  The third prescribed some medication before I even finished talking, for an overactive bladder, dismissing completely that it was a symptom of fibromyalgia.  It has been so frustrating, being told that everything is in my head.  I agree to some extent though, it very well be all in my head!

Asperger Syndrome is a neurological difference, of course it is in my head!  I found several medical papers (thanks to the web, we’re not so naïve anymore) establishing a clear link between the chronic high levels of stress and anxiety that some Aspies experience and chronic pain as in fibromyalgia, yes, again, it’s all in my head! Finally, the pills prescribed have not changed anything, as I still run for the bathroom every fifteen minutes or so. We’ll see about that, maybe it’s all in my head and I don’t really have to go. My imaginary pain is waking me up pretty much every night and is making me extremely cranky during the day as I my body stiffens and burns to the point that each mundane task is exhausting me. I did manage to convince one of those doctors to refer me to a rheumatologist, specializing in chronic pain, and my appointment is Friday. Will I succeed in convincing him? It seems that I have to make my own case and come armed with proof that I am not crazy.

Apparently, doctors are not happy with the fact that we do our own research and take charge of our health in order to avoid trying out several types of medications until, after months of trial and error, you find one with side effects that are almost bearable. God forbid you should try to find a natural and logical way to deal with the issue, and run the pharmaceutical giants out of business! Depression is a very lucrative business after all. Should I hop on the bandwagon and become like the millions of zombies heading to work downtown everyday, mind numb but even-tempered? I think not… I’m not saying that the drugs are ineffective, and in many cases might even save someone’s life, or at least their sanity.  In my opinion antidepressants have become the “happy” pill, over prescribed, and often masking an underlying condition that could be addressed or treated otherwise.

I have been living in my body for 45 years now and I find disturbing that a complete stranger that has talked to me for less than five minutes (notice that I said talked, and not listened) can form a valid opinion as to what is going on with it, unless of course there is clear visual evidence. I am aware that I have not been very kind to it, smoking, drinking, and indulging in fast-food for years. It had to be expected, if I’m being honest, that it would come to bite me back in the butt at some point. But I figured, hey, if Keith Richards is still alive today, certainly I’m not doing all that bad and should be good for a few more years. As ridiculous as it sounds, I am torn between feeling well and feeling happy. I know I would feel better by quitting smoking, eating better, drinking way less, and exercising more. But I also know that it would be hard for me to deprive myself of the little pleasures that I have indulged to reward myself for just getting through the day.  I keep delaying the quit date, I keep drinking wine with dinner and well after, and I still crave a poutine now and then. Eventually I might find the right balance between being close to pain-free and laughing out loud.

As for my sanity, well, some days are more of a struggle than others, today being one of those. It’s been useful to let some of it out though, and I wish that whoever reads this can find it useful in some way.  Any comment, good or bad, would be welcomed. I have not been very good at writing regularly and lack the discipline only because of prior commitments that are nearing the end, thankfully, but vow to dedicate more time in the very near future as it becomes available to me.

Namaste

Mea Culpa

SorryI have no problem saying I’m sorry, and I am. First of all, for pushing aside my passion and need to write and share, being overwhelmed with all that seemed to be going in the wrong direction in my life recently, and lacking the physical and mental energy to even do something about it.

Secondly, I am sorry for letting myself down, and letting myself go, to the point that only drastic changes would bring me back.  I am definitely not out of the woods yet, but I can see a clearing ahead where I can rest and catch my breath.

I have come to some important realizations as I was pondering on the sequential string of events that brought me to the state I am in at the moment.  I now understand fully what living with Asperger means, with all of its daily challenges, and that it does not really matter how many different ways I use to try to explain it, unless you’re living it, there is no possible true understanding.  Just as it is equally impossible for me to imagine what thinking as a “neurotypical” is like, because I have never known any different.

So, at the risk of appearing difficult, I have to find a way to clearly state what my needs are to function in the outside world and be somewhat comfortable, without acting like a diva.  For example, whenever I go dinning out, I have to sit with a wall or window behind me and face the rest of the space.  Otherwise, I can hear all of the conversations and noises in the background and I immediately enter in a “meltdown” state, unable to focus on the person that is trying to speak to me or sustain any kind of conversation without a superhuman mental effort.  Unfortunately, not everyone is willing to accomodate this need, as my struggle is not clearly visible to them. Maybe wearing a big set of headphones would make the message clearer…

I am also experiencing the unimaginable.  My absolute fear and total denial to ever end up anything like my mother has come back to bite me in the butt.  After years of watching her get one disease after another, one more surgery, more prescriptions, I truly believed that she brought it all onto herself, that in some way she was doing it all to get attention, to be cared for, until she past away tragically at the age of 58 from a stroke, more than likely caused by an overdose of prescribed narcotics.  I blamed the doctors for not paying attention to what drugs she was already taking, blamed my stepdad for not being firm enough against her relentless pleas to get more, and I blamed myself for not standing up to the incessant guilt trips she was giving me. I stopped listening.  Not because I didn’t care, but because it hurt too much.  Her last words to me were “I’m going to die, and you will regret it”, speaking of my refusal to leave my husband, my job and my home to move back to take care of her full time.

She underwent a delicate and painful surgery years before, shocking her frail body into chronic pain: fibromyalgia.  She was therefore prescribed an endless, montly renewed supply of morphine.  Of course, as with any painkillers currently available, the body gets accustomed, and more is needed to relieve the unrelenting pain.  I could always tell by her slurring speech on the phone when she had taken more than she should have and was upset by her seemingly unwillingness to find another way to get relief, despite the doctors suggestions.

And then, it happened.  The constant, torturous level of stress and anxiety experienced by some, if not most Aspies finally took a toll on my own body, otherwise healthy, and the pain appeared.  First showing its ugly face slowly as muscles spasms, mostly in my back and shoulders, then lower back burning sensations, and recently around my joints, hands, legs and feet, making it impossible for me to get out of bed, stiffened, barely walking, and feeling like I hadn’t slept in weeks.

I have my own pain relieving method.  This sweet, legal, affordable nectar that does not require any prescription called wine.  One or two glasses every day is good for you, right? Well, then it takes at least three for me to start feeling the knots in my back and neck loosen a little.  The line is very fine between pain management and downright alcoholism, I am very conscious of it, having been raised in a family of experts on the matter.  Also on my mind is the effect of long term use of alcohol as a coping mechanism on my own body. Have I gone too far?  I am not getting drunk every night, not wabbling into bed and crashing in a drunken stupor.  But the fact that I am looking forward to coming home at night and pouring my first glass scares me to death.

I am not my mother.  I will finish the fight she started but lacked the energy and the strenght to see through, I’ll find a way. I now understand, but too late.  Or maybe she just left too soon.

She made it clear that her struggles were far more significant, that she had almost lost her life to give me mine, that she sacrified everything, including her own happiness, to raise her two daughters.  She was unhappy, I think, for most of her life, and that saddens me.

I’m sad because I turned my back on her.  I wish she was here now to see how great we are, my sister and I.  I wish she could see the great job my sister did at raising three boys who have turned out to be handsome, smart, great yound men, full of promises.  I wish she could see how strong we are and how much closer we get as we grow older, despite living thousands of miles apart, and despite having been dealt a very shitty hand as far as genes are concerned.  She would be proud of us.

I am not sure if I am simply getting soft and mushy with age, or if my bitterness is slowly turning to compassion and understanding for those who are suffering.  All I know is that the way I see it, she might have failed me in the beginning, but I let her down in the end.  Mea Culpa.