Tony,

 

Thank you for your official declaration of "paldom".  I warmly accept. 

 

Unfortunately, I know all too well of what you speak.  You sit in a meeting of some sort, and an idea worth sharing (or so it seems) enters your brain.  So, you focus on some stable point, but the world begins to dip and yaw, and in the process of finding your equilibrium, you lose your thought.  God help you if you are also trying to write something down.  How the heck do you find the place where your pen meets paper without looking like a loon?  And how far can you tip your head onto your shoulder before you take on a distinctly "sleeping flamingo" apearance?  Being designated as "recorder" in a meeting was always just awful. 

 

I wonder if others experience that prodromal sensation of a little angry alien being living behind your eye--one that periodically stretches and squrims and starts kicking at the back of your eyeball.  This often happened after a spell of less activity, and I always knew it meant that a very bad seige was coming on.  It seemed as if the little creature was twanging on a string that was attached tightly to the inside of my head and then to my orbit. Next, the pulsing and then the heavy-duty twitch.  AND YOU CAN"T STOP IT. I don't mean to sound like a paranoid freak who actually believes that there are bad elves living in her cranium, but sometimes.............

 

I am touched by the works striving and thriving since we all do that.  But without being overly negative, examining the absolute loneliness that SOM carries with it is important.  You can beat your way through a weaving and jerking day, try to appear as unaffected as possible, and collapse at home, flat-out exhausted.  You know how hard you have worked to keep productive, but nobody else does and frankly, there aren't a lot of people who want to hear about it.  It's pretty isolating.  Still, we do thrive.  If I hadn't, I would never have made the ultimate decision.  I wouldn't have been strong enough.    Annie

Most of us were raised to be humble, self-effacing members of a polite society  (Except for Jeanie, but that's another story She was raised by feral creatures and some of the stories I could tell you, well, you might have nightmares. ).  An unfortunate extension of  being a selfless citizen of such a polite society is a tendency to indulge in comparisons which are disempowering, a way to minimize, without good effect, the aspects of our lives which force limitations on what we are able to do or not do.  That whole do-do symdrome.

 

Another thing that polite members of society do is to overcome difficulties in  large gestures.  I'm not saying that that is something to avoid; after all, people with cancer run marathons, win international bicycling races, manage charitable organizations, raise their families and, well, you get the idea, and that is only one disabling condition.  We are magnificent creatures that surmount our difficulties, raise them as a banner to our inate ability to succeed despite, and in spite, of them.  Goody for us, but the fine point, the exceedingly, extraordinarily fine point, is that in addition to rising above that which renders us inopertative in our desire to have a life well lived, we sometimes, truly and seriously, dishonor what we are able to accomplish, despite our disability, by comparing our circumstance to that of someone else.  I just don't think that it serves us to do that.

 

However, I believe that keeping things in perspective, which is what I think that you are trying to have, is an entirely different thing.  One of my best friends in an alcoholic.  There, but for the grace of God/the Universe/whatever you call your higher power, go I.  I used to work with a particular category of prison populations...man, if that doesn't put things in perspective for me, nothing will.  No matter what our situation, circumstance or condition, there will always be someone who seems in worse straits than those in which we find ourselves. 

 

If I'm wrong, then it won't be the first time, nor will it be the last.  My very own, personal, and probably poorly informed, opinion is that many of our fellow SOMers are having difficulty being as less supportive of their condition as they might be.  We are misdiagnosed, underdiagnosed and misunderstood, just like legions with other disabling conditions.  The sad fact is that most of them are worse off than we are.  Yeah, I know, I have my own blah-blah-blah moments, issues, days.

 

I am so sorry to hear about your buddy's friend.  I spent time helping a friend and her family during the final months of her illness.  Reading what you wrote reminds me of that fragile, difficult and amazing time.  It occurs to me that we forget how short and lovely our own time here can be.

 

Enough.  I have to go make spaghetti and meatball cupcakes for a birthday party this afternoon.  They are always a crowd-pleaser and I will post a photo later, if I can find my camera.  And it has working batteries.  And I remember.

 

I hope that lots of members chime in here so that you get lots of material for your song.

I think, possibly, that loneliness is an element of the lives of people whose disability is not readily visible to the general public, or is misunderstood or dismissed by the vast majority of folks.  There are lots of those invisible disabilities.  People with them don't see ours.  We don't see theirs. I will bet we all have a lot in common.

 

SOM is not anything that rings a bell with much of anyone.  If they are curious, they have to crouch down, squint carefully into one's flickering eye WHEN it is in full-flicker, and then usually are underimpressed.  You won't ever see an advertisement for a "National Walk/Run for Superior Oblique Myokymia".  There aren't any T shirts, though doubtless the talent abounds to get those moving.  It is no wonder that, sometimes, we look at more wrenching or more visible awful situations, and de-value our own.

 

Still, the perspective thing is important.  It does allow you to value the things and abilities that you do have.  (I might not be able to see  the way I want to, but I can see the faces of my loved people; I might walk into things and bang myself up, but I can walk.  You know--on and on.)  Often, such thoughts really cheered me--though it did take awhile to come to the concrete belief that I had a disability and that it was a real disability, and that it was important and life-altering. 

 

After that step, the comparisons or the ranking was not a problem.  I no longer de-valued my own situation, and acknowledged that I might deal with more loneliness and more misunderstanding than most, and had every right to be distressed, saddened, and furious about it.  I'm still mad about all the time it took away, and all the uproar it caused, and all the agonizing about how to treat or fix it.  Not to mention that I will probably forever be irritated by the cavalier attitude that many people I should have been able to count on took toward the whole many-years of SOM.  Oddly, freely engaging in that kind of thought seems like real progress.    Annie

 

PS.  Somehow, about a minimum of 100+ of those light orange lady bug things have found their way into my little cubby hole of a study and are dive-bombing my computer.  My image of the day is me, typing (badly as usual) whilst being bombarded by polka-dotted intruders who keep falling into my keyboard.   

Hello all,

 

Firstly - hope all my fellow Canadians had a lovely Thanksgiving weekend!!!

Annie, your last post was running through my head last night as I sat down to a beautiful turkey dinner.  You mentioned being irritated by the cavalier attitude of people you should have been able to count on.  I definitely felt that way yesterday.  Warning - here comes a *itching session!  I have been taking Topamax for 7 weeks now - have lost my appetite and almost everything tastes weird (no relief to SOM though).  Topamax dosage was increased last week and my body is definitely trying to adjust.  My mother was totally upset with me yesterday that I was way too tired and out of it to help prepare the dinner and then I probably ate about as much as my one year old nephew.  I was too out of it too make decent conversation at dinner and crashed shortly after.  Before crashing though my mother had the talk with me about how irresponsible I am that I am all drugged out.  I feel stuck.  What can I do?  I feel like I have to at least try to find something that will help the SOM.  If I'm not, I may get cut off from my long term disability benefits but at the same time hate being this way.  Of course I want to eat.  Of course I want to enjoy the company of family and friends.  And I definitely want them to understand that I don't want to be this way.  I'm just angry I guess that my Thanksgiving dinner was just one more thing that this brutal thing called SOM managed to take away from me.  OK.  Thanks for listening.  Gonna go sit in the garden and eat worms.  Then go vote!

Probably not the right spot for this message.  I never know.  I just wing it.

None of their business.

 

Whatever you need to do (or even think that you need to do) for yourself, whether it is concerning your SOM or any other part of your life, it is none of their business.

 

If you dye your hair fifteen different stripey patterns and colours, it's none of their business.

 

If you don't recycle or feed the dog on time or mow your grass regularly or vote or shop at the right stores or go to church or experiment with medications to help your vision disorder, it's none of their business.

 

This kind of familial crap enrages me.

 

Quite frankly, anyone is entitled to have any thought, idea or opinion that they want, no matter how stupid it is.  What they are not entitiled to do is express that  ridiculous, uninformed, busybody thought, idea or opinion.

 

Why?

 

Because it is none of their damn business.

 

Not only is it none of their business, you do not have any responsibility to explain or justify what you do.

 

Please don't take the whole 'none of their business' thing as license to go out and litter or speed on the highway or hold up the corner convenience store or any other socially reprehensible act, but the things that you have to do in your life in order to actually have a life are your business...not theirs.

 

And as far as bitching goes, you can do that any old time and any old place on our site that is convenient for you.

 

Clearly this holds a lot of energy for me, mostly because of, well, that's a story for another time. 

 

Alrighty now.  Whose business is it?  NOT theirs.

Yes, Juds.  Yes, yes.  Ker, you have the absolute right to be zonked and weary and un-hungry and sad and mad as hell.  You deserve to  be acknowledged kindly, at the very least, but it doesn't usually happen--and that can fuel anger at the same time that you're trying to swallow it.

 

This subject is pretty raw for me.  (Hoo boy--is that ever an understatement.) Thus, I won't get started--right now anyway.  But please just holler (or whimper if you're feeling awful) when you need support.

 

Chocolate is much better for bad feelings and lousy appetites than worms.  The darker and more bitter, the better. 

 

Annie 

Juds and Annie, Thank you!  Your advice always leaves me feeling like I just had tea with a couple of wise Aunties.  I know you guys are right - it's hard though when my mom is the one that is helping me out with my 10 year old son when I'm too tired to do it.  Anyways - one day at a time.  Kerry