Lived Experience

Reminiscences on my Life with Obsessive-Compulsive Disorder and Asperger’s Syndrome: Andy's Story

NOTE: In 2013, Asperger’s Syndrome was subsumed into the category of Autism Spectrum Disorder (ASD) and no longer considered its own diagnosis. The IOCDF recognizes that this change had strongly differing opinions, and that some people with lived experience (as well as professionals) continue to value and use this term, finding it more descriptively specific than ASD. 

For too long have I lurked around, feeling that I was the only one who didn’t know what his life really was meant for, or to own some kind of firm purpose or goal. For too, too many years have I always shied away, impeding my confidence level until I was at the bottom of some endless pit, excavated by the dual machine – Asperger’s and OCD. It was here that I had to resign myself to the ‘fact’ that always drove a bitter spike through me which was always assaulting me with the same message: “I’ll never be a somebody, just another statistic that perishes alone, wallowing in the muck and slimy mire of self-pity and hopelessness.” I would, in this pit, in that deplorable dungeon engineered by my own mind, condemn myself as far too weak, or always proclaiming to ‘realize’ that my voice won’t be heard in any setting – let alone in an influential, policy-making forum where important decisions are made. Indeed, my confidence was in the sub-zero range and soon frustration and sorrow would overtake me in a constant barrage of self-insults where I’d be forced to retreat into a shelter that would cut the “real Andy” off from the rest of “everyday” society which always moves on at breakneck speed, like an out-of-control train, waiting for no one who’s straggling along or struggling to keep up. Perhaps it was pure foolishness and stupidity to think that I’d come back: a story of salvation and redemption that’s sweeter than pure nectar from a flower; but all I found myself (with the timidity I’ve always protruded in my so-called “character” acting as an anchor that would threaten to drown me out in totality) winding up deeper and deeper into a void thinking “I’m an embarrassment” or a failure at everything I’ve ever tried. However, I knew that I must stay positive and faithful and grateful to God because whatever he, she, or it is, the power from teachings that originate from scripture was designed to make all men, women, and animals free from the “disgraceful, faulty and dependent image” that I’ve felt was my whole defining concept behind me. It was time, I saw –many years ago, in fact – to reinvent and renew Andrew so that he will be looked at in a light that will show that he’s a kind, loving, and compassionate person that just struggles with two cognitive disorders which get him down sometimes. Granted, I’m a little overdue no thanks to the negative attitudes that my mind was tangled in and blinded by, and also because of the treacherous, nearly un-scalable “cliffs” of Asperger’s and OCD; but late, my reader, is better than never ever.

To be honest, I don’t know and never want to or need to or should even care to know what others' mental judgments are of my outward, social person. I’ve been told by others and unfortunately put too much significance internally to the “fact” (or is it just a complete falsehood?) that “I haven’t succeeded because I haven’t learned a dang thing throughout my experiences in life.” Now I’m saying it really shouldn’t matter to me or you or anyone because we’re all going to perish one day no matter how far we perceived that we’ve "taken” our lives' adventures. We’ll all be looking back and taking inventory of the accomplishments we, as American citizens were given infinite chances to live the life that God gave us to our full and true potential. The question that we’re constantly presented with is: “Have we wrung out every juicy inch of life’s opportunities like it’s a sponge where we soak in our ‘major’ events, while fondly and aggressively taking advantage of the memories that trickle out of life’s ‘sponge’?” But here’s the important thing – we must know how to strategically manipulate and navigate through these experiences to gain lasting relationships, forge permanent and strategic bonds with just the right individuals that will help you achieve your dreams in the direction that you see fit. All the while, we try to survive the unavoidable onslaught of “stress”, the murderer of all peace and calmness, in whatever puny, non-effective ways we employ to extinguish this fire, which spares no one and nothing; provoking, torturing, intimidating, and daunting those who can’t handle or come to terms with it.

Many persons with Asperger’s and OCD find themselves too caught up in the disorder’s symptoms to even start trying to network and branch out into the community, which would provide a sort of “insurance” coupled with the intense, unique knowledge sets that we with OCD and (especially Asperger’s) have gained and have yet to acquire. I feel that employers and so forth will start to realize what an incredible, extraordinary asset they would have on their team if our “kind” were gambled upon. I guess I learned the hard way because it took forever for my measly self to start believing in my abilities and in my talents (because I would, while in that 2,000 mile-deep hole, always belittling and berating myself, saying that I was a “lost cause”, that my time to shine had come and gone like that fleeting presence of a speeding, wild train ride that I missed a lifetime ago).

Also, while ruminating in the virtual shell that anxiety (which is the key term and feeling that my disorders found their traits upon, which will definitely entomb the patient from going out on a limb and taking risks, experiencing major changes and welcoming these changes and foreign challenges as well) has built up around me like a moat filled with bloodthirsty piranha around a castle, insulating me from life and the real world until I don’t know how to function effectively and in an independent way in this unmerciful world. For example, with Asperger’s syndrome, it makes socializing without thinking that everyone in a crowd of strangers and (yes, it applies in this realm as well) family members are looking at you like you’re some freak of nature or fooling you into being far too self-conscious and easily flustered and embarrassed. The other edge of this razor-sharp sword, OCD, always makes a mockery of the very essence of your humanity: that everyone has control over their schedules, and their freedom-cherishing lives – but OCD always shackles you to its’ demands and its’ rut or, heck, let’s say, “pattern” of thinking. This will leave the (once the sufferer is in the middle of a compulsion which acts in tandem with their obsession; for me it’s my overall irrational sense that I’m unhealthy and getting obese) individual with that scourge of an urge to go through with your compulsion until the brain is satisfied that you’ve accomplished this compulsion. However, in reality, the poor person hasn’t accomplished one iota of anything but wasting the most valuable and non-renewable resource that all are endowed with; the present time to contemplate how to maximize and shape time in our future. OCD also – for me, anyways – took over and took priority over my job duties as an usher at a local movie theater, for it was a severe case of OCD that I was faced with and still face every single, solitary day. For it’s as potent and strong as ever within me, struggling to influence all of my thoughts (I still thank God I am in the situation I’m in currently, even though my whole life is now dedicated to the process of getting back onto the proverbial track that will lead me to the things that my whole soul and, indeed, my humanity screeches for: a wife, a place of my own, and to fly solo finally.). I have yet to meet anyone with the very OCD symptoms that I’ve always presented in all my years of therapy (heck, I don’t even go to OCD therapy groups anymore because, to me, always attending such a group would be like caving in to the disorder, letting it define you, instead of you taking the reins and cracking the whip on it) and that bothers me to my core. Is it because of pure cowardice and yellow-belly actions that all this is happening, that I haven’t found my mate yet or that I haven’t moved out or found a real job or done this or that; or is there a medical condition behind my nervousness and fear? From this horse’s mouth, the answer is all socially constructed as man is bound to be ever since he was created ‘til ages after I’m dead and gone.

As you can tell, I’m sort of a philosophical and religious person, not in my actions and speech usually, but in my thoughts: I think this is so because of Asperger’s rendering in me a very critical opinion. Whenever I hear, nowadays, anyone uttering something ignorant or uncaring about mental and cognitive health, especially any conversation that involves my two disorders within, say, a class discussion or even just a chit-chat in a lunchroom, on the streets, anywhere, it’s as if a switch is turned on in my mind that activates my passion to speak up on behalf of this subject which I’m potently mingled with now. Articulating my thoughts is another annoying problem for me, at least in the past. In the very recent past, it seemed like every time I’d open my mouth, I’d be struggling to make my point and that would drive me up the wall every time ‘til I felt discouraged and defeated in the very environment (my beloved church) where I would feel totally at ease and ‘in charge’ of expressing and just being myself. Now, I feel like a real outsider and a total reject (the underlying and, I see, unfounded reason for this might be because my cohort that attended Sunday school with me represented the future and if you don’t feel like you’ve done anything with your life that made a positive impact on the world in an independent fashion, which was the gloomy, depressing thought that followed me around like a shadow, then it negatively affects your behavior like a vicious circle) to my own church community. That psychological state hurts me immeasurably but, again I can’t pretend that it’s the past or resurrect the old “gang” (in those so-called ‘happy’ times before my diagnoses of OCD and Asperger’s) that was so prominent and the practical ‘center’ in my church when I was a youth. Now, to me at least, it doesn’t feel fun anymore but somewhat of a chore that I don’t look forward to having to tend to, which is the completely wrong attitude to have and it is up to me alone to shake myself awake and pinch myself into full consciousness, or I’ll always feel lonely or perceive that I’m “standing out like a sore thumb” when I attend the services. I say that because I can feel the massively strong pull that draws people away from my faith and fixates and sells them on the idea that they don’t need any higher, divine power to help them or to live under, which I think is wrong too, but again, this is only a humble opinion.
In the past, which I’ve always wanted to alter somehow; in fact, I would lay in my bed many a night and go crazy with raw, wanton regret, bitter and very caustic in nature, like a dose of ammonia assaulting your nostrils, almost wanting to scream like a wild fiend. What led me to this state? The nagging memory that I had more ‘chances’ to form lasting relations and more social contact with women, attractive and young and friendly women that seemed at the time to accept me as I was (like God is supposed to do according to the scriptures) but that was before I had to deal with these crappy disorders, which took me away somewhat, from the normalcy that these women were drawn to apparently. Yet there is a giant fault line that “regret” leads you into: like the OCD compulsions, it’s a waste of time and intellectual energy; you’re so dazzled and tempted by what could have been so much that you’ll miss the opportunities that are bashing down your door and threatening to nail you in the jaw at that very moment.

So I’m faced with the big blankness of my future, one that time is now literally shoving me to make a decision of what I’d like to do with my entire formal educational career. How do I translate my knowledge and skills into a job that will establish my legacy and how I want to be remembered? I’ve been blessed with a truly unique experience, a different kind of education totally, and that is this: I embody and thus am poised to inspire and offer my life as a model of success to others that are just beginning to see how debilitating and handicapping these disorders really are, whether it be the sufferers themselves or their family or ones that are involved intimately with them. So I pray this: God, don’t cure me but help me cope with these disorders and let others who think they are being squeezed to death in the mighty grip of Asperger’s and OCD be enlightened and find the will to carry on, to know that any seemingly insurmountable problem can be conquered with constant help and prayer. Also never, ever underestimate and shame your written name and your personality and your reputation; for when your name is referenced in the book on your life (dare I say an autobiography or will it be a more obscure species of record?), in what emotional tint will your legacy be peered at and what kind of memories will accompany your heritage which will live on through these unfair and uncertain ages?

So, even if you feel like your life is a vast zero, a null, voided-out, and shriveled husk of what it once had been (after a seemingly normal, enchantment-filled childhood) due to an a lot of perceived failures, don’t give up hope that you’ll one day return to a fulfilling and normal life (no matter what your definition of the term “normality” is). You just have to focus on your talents, your interests, your loves, your hobbies, your knowledge, and especially your soul’s longings (even if it feels like your soul is getting compressed in the face of diversity and stressful situations) and work on honing them into something that will turn the tables on your critics; prove that you’re not just a box of severe symptoms or a one-dimensional person. I’m no expert whatsoever on anything to be sitting here and entering all this in; heck, I’m as guilty as the rest when it comes down to practicing what I preach. Yet, I’m only beginning to realize that you will find your purpose, what you were “meant for in life” even if all inspiration seems buried seven thousand miles under the earth’s layers of sediment. Even through all that social and painful awkwardness that Asperger’s syndrome craves to magnify within your mind, to make you feel extremely vulnerable and hesitant and shy and, let’s face it, like you’re always timid and exposed out in public venues, for example, or like you’ve been in a semi-coma all your life; you alone have the power to bash your way out of these barriers.

I’ve also noticed that it always seemingly ends up that you can never solidify a relationship that you’re dead-set intent on developing, always a complete, utter stranger to everyone that has ever crossed your path and you’re doomed to wrap up all relations in that lonely, isolative way where no one understands your behaviors or mentalities: know that you’re never only in the company of a pair of cognitive disorders. Others indeed are candidly open, willing, waiting, and just as eager to meet you and become friends with you even if you neglect the living – crap out of certain hemispheres of your young or older life and are razor-sharp in your certainty ‘that it’s too late to change all of it’. Out there, beyond your all-enveloping obsessions and the compulsions that must be performed in order to squash those horrid urges, or beyond all your tremendous efforts to flee that bacterium or infection obtained from any surface. You should witness that life is not a sterile prison whose walls are insulated by the likes of OCD or autism spectrum disorder characteristics where you are only one of the throngs of spectators, not an active actor in this thing that demands engaging we call life: it’s flamboyant and unique and you, my reader, are the spice that makes the blandness of “the stew” much more delectable and the adventures’ plots shall thicken, becoming infinitely more complex with each spin you add.

Your voice is vital!

If you are an autistic individual with OCD, you can contribute to the conversation by sharing your personal journey or a message of hope with the IOCDF community.