Tuesday, November 4, 2008

The Denial Game

This will most likely sound like some sort of "self pitty" blog, but I don't care.  If I don't say it, it will stay in my head and if it stays in my head, it doesn't get said...

Denial is a strange thing...  It kreeps up on you without you even noticing it.  I keep on getting moments whereby I wonder to my self..."Is this diagnosis not maybe a silly mistake?  Is all my problems not maybe just all in my head?".  I was sitting at work, looking at my screen ...ironically enough, getting frustrated with palinopsic shadow's... and thinking, "Do I really need these wrist braces?  Do I really need to be working with a pen & tablet instead of a mouse or am I just being over dramatic?"  The next moment, as if to slap me in the face and wake me from this wishfull thinking, my wrist burns like someone left a lit cigarette under my skin and I drop my pen to grab on to my wrist...  For an instant, the answer was "No, it's not all in my head..."  but just as quickly as it came, it disappeared again.

Trying to see it in a defferent light, I start to wonder wether thinking this way is not maybe a slap in the face of the doctor(s) that diagnosed me and that in being in denial, means I don't trust their judgement.  The first doctor was a bit obscure, toying with the idea and not really sure what to make of it...also the one to try to get me out of his office as quick as possible as he had no idea how to help me (His words, not mine).  The second was a self-assured, no doubt in my mind, years of experience exclamation.  His words was clear and his voice still echo's in my head at nights... "Boy, you have Marfan's".  The way that he said it and the tone of his voice seemed to imply "What the heck are you doing here wasting my time.  Surely by now, someone must have diagnosed you and surely by now, you should be aware that your joints is not going to work properly."  The third and the deal clincher, was my cardiologist.  He listened to my chest for barely a second, said "Uhu...um...uhum", turned on his equipment and without hesitation positioned the wand at precisely the right place and directed my eyes to the screen, showing the way that my heart-valve would billow open allowing the blood to rush out in the wrong direction.

Yet still, I do not see it.  Even amidst daily reminders that my body does not work the way it should I struggle to get to terms with it.  I wake up and it sounds as if though I am breaking my whole body apart from the cracks and pops as I stretch.  I walk up a flight of stairs and I hear a "crunch", followed by seering pain in my knee, I sit for longer than a half an hour and my back aches like some boxer repeatedly punched me, I work on the computer without my braces on, or play piano and my wrist burns like it's on fire, I stand up too fast and my vision fades to black and I have to grab on to anything and everything to stop my tall body from toppling over, I stand next to a college while trying to help him and I need to grab a chair or I forgetfully go down on my hunches and can't get back up, I stand up from my chair and my sternum cracks so loudly everyone stops what theyre doing, I sit too long in traffic and my legs turn to jello, shaking uncontrolably and my knee hurting like I had just crashed it into an object, I arrive at home with a warm home cooked meal waiting for me but I can't eat, I hardly have an appetite and people think of me as a vampire as they never see me eating, yet my BMI is up to par, I have a million and one things I still want to do, but even on weekends, I just don't have the energy to do it ... and that is on a good day.

Doctors keep on noting my high arched palette, crowded teeth, poor eye-sight, flat feet, long spidery fingers that wraps around my own wrist with ease, bad knee placement, thin long arms and legs, and tall stature, yet I still doubt them.  My doctor screams at me when I dislocate a joint because he thinks I popped it back my self while it is actually just so lax, it went back on it's own but I almost believe that I had done it ... and against doctor's orders at that.  

How can my mind examine all of these signs every day and then jump to the conclusion that I am just a weak human being, with a weak mind, trying to blame my weakness on some random coincedence that my body looks, acts and feels like that of someone who has a disorder.  Is it even possible for someone to have all of these physical attributes thrown together and not be genetically flawed...  I don't know why I find it so difficult to swallow this.  I don't know why I keep bashing my head against it instead of just carrying on with my life.  I am in no danger of getting hurt or dying, so long as I don't pick up anything heavier than a baby, push a shopping cart, step sideways, try to open a Coke bottle, run, ride bike, jump, dance...

Am I really expected to believe that I WILL shorten my life by simply going to the gym and do any form of latteral exercise, cardio vascular exercise or exerting myself to a quarter of what the teenager next to me is.  Am I really expected to believe that the two malfunctioning heart-valves WILL cause blood pressure problems which WILL inflate my aorta if I don't take the medication that I have been without for almost 29 years...would I really have died by the time I was 30 or 40 if they had not identified these "abnormalities".

Am I really "sick"...
Am I just what I think I am...
Am I lost...
Am I making a mountain out of a molehill...  

Am I complaining over nothing even though I can't do archery, epee or ice-skating.  Am I annoying others by constantly pointing out my weaknesses when asked to perform a task I have been told could injure me.  Am I weak because I can't concentrate for long enough to hold one thaught in my head without forgetting it or that I am only able to work for a short time before my mind starts realing from fatigue or racing around from boredom.

Am I who I want to be...  
Can I be who I want to be...  
Is there someone I am supposed to be...

There is so many other people out there, that has lives much more complicated and much more painfull then mine.  What right do I have to feel in pain.  What right do I have to feel weak.  What right do I have to feel sad over things I can't do.  What right do I have to call my self, even in the slightest sense, disabled.  And just for a laugh, what right do I have in getting a traffic fine squashed because the officer saw my wrist braces and felt sorry for me.

Am I really in pain?  Isn't pain normal?  Doesn't everyone dislocate their knee every 4 or 5 months?

What is normal...
What am I...
What am I supposed to be...

What do I need...what do I allow my self to have...what am I allowed to be...

Is all of my blogs doomed to be rethorical questions...ones that stick in your mind like an ice-pick that you know you won't get an answer to yet you need one...you want one...you have to have one but still you know, there will never be one.

Why am I?


  1. Hmmm "Why am I" is a very deep question, which we all should ask, but most of us -with a deep seated sense of entitlement, fail to. I am not even going to attempt to address it here.

    I had two thoughts reading this post:

    1. You have only had nine months of a valid diagnosis against a lifetime of being told nothing is wrong and to suck it up. You can't undo a lifetime's damage in just nine months.

    2. You are probably going through the stages of grief -which is common with a diagnosis such as Marfan. Denial is the first stage, BTW.

    Here they are.

    1. Denial:
    * Example - "I feel fine."; "This can't be happening, not to me!"
    2. Anger:
    * Example - "Why me? It's not fair!" "NO! NO! How can you accept this!"
    3. Bargaining:
    * Example - "Just let me live to see my children graduate."; "I'll do anything, can't you stretch it out? A few more years."
    4. Depression:
    * Example - "I'm so sad, why bother with anything?"; "I'm going to die . . . What's the point?"
    5. Acceptance:
    * Example - "It's going to be OK."; "I can't fight it, I may as well prepare for it."


    Hang in there. I know some of what you are going through. Funny: I accepted the medical diagnoses pretty well, but I went through a lot with my kids Autism diagnoses; -especially the first one. By the time the second kid was DXed with Autism I was about ready for anything!

    I did go to therapy for a bit and it helped. That's a very American thing for an Irishwoman to to say, isn't it? (Me Da would be horrified)


  2. Drake, OSM has a point about not having had much time to accept your diagnosis. I think there is also some social conditioning at work, too. I'll go into my take on it a bit more on my blog, OK?

    As for other people having it worse than you do...well other people have it better than you, too. And you never know when someone you think is worse off than you is looking you over, thinking "there but by the grace..."

  3. I can't add anything that OSM & yanub didn't already say. I'm only a few month in to my dx of EDS & I am still working my way thru acceptance too.

  4. Um, what they said, sorta. Except to excuse the language I am "FUCK YOU" sort of person when it comes to someone saying what I can or cannot do. I admit, I had it stretched (oh a Marfan's muscle joke there) out over a while. The knee operations cut away so much muscle that you can still touch my knee ball inside my socket on both knees (great party trick if gagging and vomiting is what you want!). I was told, "If you do anything to your knees, you'll never walk again" (I hadn't been walking for a year or so besides arm crutches and a swing support).

    So, I started training for 10K's, then marathons, then downhill alpine skiing (I WAS wearing knee braces, I'm not stupid AND stupid - just stupid). I did however decide after all the knee braces in the world couldn't stop my knees going backwards (and you know how much THAT hurts) that mogul downhills or mogul ski racing was not for me. See, I know my limits.

    Obviously there is a spectrum of Marfans though my PT, my OT, my GP and a few other people's first words were, "You have marfan's right?" And I don't know how far you are on the spectrum. My bones have been so long my muscles tend to rip a lot, like RIP in two. But I did archery (admittedly, since my elbow hyperextened backward I had to get a special brace to stop the string hitting my, um, backwards elbow). I found that, for me, and for others, running, keeping legs and arms extremely taunt was a) painful on a daily basis and b) allowed for a certain level of athletics, like fencing for example. I mean if Joyce Joyner (hall of famer) was an Olympic Athlete in Volleyball with marfans damned if I am going to give in just because of pain or hyper-extention (Um, Joyce Joyner DIED because of Marfan's in the Olympics, I should probably add).

    And the same with the heart, I wasn't the only woman out there with backwards flowing heart valves at competitions, I mean, you hear that grunt and the holding of the chest and you go, "Oh what do you have?" and they say and go, "Did they offer you the beta blockers too." and I'm, "Yeah, but I hear they can slow down performance, so I'd rather keep the pain." and she's like, "Me too!"

    Admittedly I am sort of a type A (AAA!) personality and have travelled (with a backpack!) with a laterally fractured spine - yeah, it hurt, a lot! Or done things or finished races sort of staring and wild eyes saying, "Don't tell me what I can and CAN'T DO!" before passing out (Last week a woman said she saw the blood pooling up through her SHOE - how much blood is that - but decided to finish the race anyway - yikes!).

    So that is one side. The other side is that I had a good friend die at 36/37 while jogging from marfans, it is unclear if his heart exploded or if he slipped and the impact of the flagstones ruptured his heart. He was a great guy, he had a bookstore, he was a PRESCENCE if you know what I mean, lived life. And he was gone. Becuase he went jogging one morning. Makes zero sense. And that IS the other side of Marfans.

    I guess what I am saying is, okay, you have been put through the sifter and given your life back again (along with some heart pills). What you decide to do with is depends on what you want to do and how badly you want to do. If you WANT to run a marathon, I honestly believe you can - it might take surgery and braces like it did for me, it might take MORE, but you CAN. You don't have to. But it is still an option. It isn't going to be like 'other people' no, but it isn't impossible either (just maybe REALLY, really difficult...along with the possiblity it might kill you - but after you've done the 40th thing that might kill you, you worry a lot less; then you have a Marfan's friend die and that slow things down a bit).

    Now, do you NEED to be in pain if you have the tech to use something other than a mousepad? No, so go for it. Same with braces. If they work, use em! I am sure you will find many other ways to be in pain. You will have lots of people who will tell you what you can't do, or shouldn't do, or advise you against doing, or talk about limitations. And you will have some people who know NOTHING about marfans telling you to do things you KNOW are stupid.

    I am saying, if you want it, you can do it. But if you are hurting so bad that you can't sleep or crying from the pain, then you probably don't want it. But if you WANT IT, you really WANT IT - you can do it. Yeah, you may jog 5 times a week and be the ONLY person you know who hurts EVERY SINGLE TIME for three days afterward. Not fair. Not right. But possible.

    And yeah. You could be another friend who didn't go in for an MRI when they should have and slipped. I don't want that. But I don't want you living your life doubting yourself. I don't know how acceptance will come for you, and how many times you will go back to anger and the rest. But "It is not impossible until 'I' say it is impossible" - probably one of THE most arrogant statements in human history and yet, was my motto (heck, still may be my motto). I was so used to being told what I couldn't do, I simply didn't believe anyone anymore. "Oh someone with my limbs can't play ______; hmmm is that true or has no one ever figured out to do it?" And yeah, some times I went; Gasp, gasp, "Okay, I think it is near impossible......AT THIS TIME."

    I really do wish you will and maybe a life of less physical pain if they have figured out that part yet. Let me know if they have (oh, the double knee surgery eliminated those waiting in traffic problems you mention).

    Okay, long comment - one of the last races I trained for was near you - the 90 km (or was it mile) ultramarathon, which includes a killer hill. I never made the race; I trained over nine months for it (too bad, really wanted to go). I don't regret those nights and days pushing myself up hills saying, "Remember, it will be three times hotter than this, is that the fastest you can go?" Or running for hours, or running for miles and miles, dozens. I'm NOT an athlete....but I know how to endure, I think anyone with Marfan's does.

  5. All of you guys are so right. I posted comments on your blogs ;D

    Thanks, I needed that... Really, I did...

    Beth, I am in some ways like you...and like you say... in that I proved people wrong when they said I couldn't do programming as I am no good at math's or that there is no future in programming or that one couldn't play the piano without any formal training and without any sheet music or that the way the code is written is the best way that it could be done ...

    I hear you and agree with you. There is always more than one way to do anything in this life. People only write rule books so they have it easy in doing things, it doesn't mean it HAS to be done that way...people just think it does and get upset when you do the same thing they can do, only in a different way.

    Physically, I need to find my strength... and maybe some guts as well, in doing the things I have always wanted to.

    Somehow, things just seem to "conspire" to keep me away from certain things. This is where it gets weird though as you and I have a lot of common interests... I was enrolling in an Epee class when my knee gave out on me ... I could get my knees fixed so I can do that but the doctors don't want to. They are afraid that I am going to lose most of my mobility in my knees.

    After that, I was looking into Archery when my wrist problems started. I could do it, untill my wrist finally gives in and just get them to fuse the bugger... but that would mean no more piano/keyboard as I wouldn't have the articulation in my wrists I need to play properly.

    In that aspect, I am at least pushing my self. I have a couple of songs I am trying to get out of rough-sketch and into work in progress.

    On the pain...well, there is only so much they can do. Chondro and Osteo is not reverseable... they can only try and halt it but they can't take away the existing. I am however taking Arthritis supplements that does help quite a bit...except for rainy days like today... My wrist constantly burns and my whole body ache's all over.

    My major criterea in terms of Marfan's, is my heart, and eyes and I need to go for checkups on both every six months to monitor for any changes/problems.

    Most of my pain stems from joint problems due to lax legiments and in terms of that, apart from torn ligements in my knee due to abnormal movement during dislocation, my legiments and tendons are too lax to actually tear, so unlike you, I am on the "elastic" side, rather than the "rigid" side?

    It's ironic...as I was going to say that mostly I am in not too bad shape and sometimes wonder wether I truely have huge pain issues...that is untill this morning with all the weather. I am being tortured by my body and for some reason, even though I am breathing, it feels like I am not getting enough oxygen ... like I have a bag over my head.

    But you are so right about the endurance side of Marfan's... The pain that you experience would most than likely cause me to cry. The pain that I experience, would more than likely make normal people cry... Pain is relative to ones past and current experience I guess.

    Too bad about you not being able to run the ultramarathon... :(. Was that maybe the Comrades Marathon?