Just a few thoughts for starters.  First, it is so tragi-comic, Juds, to hear of your chicken, oven, etc. experiences.  I think of washing the soapsuds off the peas and serving them anyway because I drained them into the wrong side of the sink and spilled them--again.  (Why tell?  Nobody knew.)  All the trails of slopped coffee that gave away my current locations at work.  The series of scars up my arm from the oven racks , on my wrist from the iron, and oh, the shins!  Banged, permanently marked, dented and blugeoned shins.  I have walked into EVERYTHING there is to walk into.  Taking out a piece of my upper lip trying to disassemble the wands of the vacuum cleaner and misgauging the distance.  Riding a horse into a wall.  Pouring juice next to the glass--close but not close enough.  Leaning over to sip my lovely summer beverage at a cocktail gathering, and publically ramming a red and white striped drinking straw directly up my nostril.  And so it goes.  You learn to laugh and point the funny-finger at yourself.  Oh, me--silly kluz--I am a funny person--haw haw.  But it burns and it hurts.  Guess that will be a subject unto itself, for elaboration, soon.   I am just now starting to admit that it's been painful.

 

I am a better person for it all.  I wish I could have become a better person without SOM, but if I had to have it, it has added to what seems to be the rich patina of my existence.  Surely, I am more tolerant of others, and am internally devastated when I think of disabilities that are so much worse, more final than ours.  But still, it goes to the depth of your being often, and forces you to scrape up the positive side of your life--the good things that still happen--the beauty that you see even if it is moving beauty.

 

It occurred to me that a lot of us love photos and photography.  I think I know why.  Almost all of the most significant or treasured or timely experiences of my life over the past maybe 15-16 years are on film.  Why?  Because they are still.  Blessedly still.  The images I "saw" were usually blurred and bobbing, but the camera catches them as they really are.  Frozen in time, with a silent horizon and a dependable level-ness.  If we didn't get to see them as they were, we can save them for the times that we may enjoy them in their entire scope--even if they are now reduced to four by six bits of life.  I am grateful for the shoeboxes stuffed with them--disorganized and in need of being respectfully albumed, but none-the-less there for me.

 

Yesterday, I began to understand that there is a post-traumatic SOM disorder.  Fancy clinical stuff, yes?  But I think it exists and that some of us are going to need to figure out how to help eachother with that.  It will be another day and another time, but something to think about.  

 

Annie

Even given the benefit and blessing of time, I'm still not so sure that there is much of the comedic involved here, Annie.  Granted, a healthy and well-developed sense of humor is one of the main things that helps us live with our SOM, just as it does for anyone with a disability, other medical or emotional condition, or, really, anyone for that matter.  Truth is that if you are a person, experiencing whatever life sends your way, you need to be able to see the humor in whatever happens to you.

 

I waited a few days before replying because I was honestly surprised that remembering those parts of my earlier SOM experience held a large amount of energy for me.  I do believe, and as most of have come to realize, that my SOM has made me a better person.  I've written about this many times over the past six years, but I'm going to do so again. 

 

I believe that there isn't any randomness in the universe.  I am not a fatalist, but I do believe that everything happens to us for some kind of reason.  We don't always know, sometimes never discerning, what that reason or purpose is, but it is in our own best interest to at least pay attention to that particular thing that is happening or has happened to us.  It's a sure bet that everyone already knows this.  Simply living brings that lesson to us.  However, I am also hoping that I'm not the only person for whom these lessons are hard won, taking my own sweet, and often anguished, time in accepting them and getting to the learning part of each experience.

 

So, yeah, I'm more tolerant, empathetic, understanding and all the rest.  Like anyone who has done even a tiny amount of noodling around on the Internet in medically focused websites will find a stunning wealth of information about people who have much more devastating issues that SOM.  I do research nearly every day and come across uncounted and heartbreaking postings and examples of the nearly unbearable issues with which other people are struggling.  Every day I find people who haven't found a diagnosis or even a compassionate doctor.  The suffering of those people, especially those who are dealing with medical issues involving children often shames me in my piteous struggle with this disorder.

 

Still, my suffering is just as significant and just as real and just as compromising and just as debilitating as that of other people.  SOM, for me, is just as bad as it can be.  For me.

 

And yet, it's all really just so much...well, I can't put it into words, especially ones that can be used here.  I'm kind of stuck right now.  I had my surgery over six months ago and I'm still not doing many of the things that I intended to do when I was "better."  Part of it is that I'm still healing and still coping with the diplopia, but that kinf of makes me angry with myself because there are a gazillion people who have this level of disability and much worse who have managed to get on with their lives and do whatever they need to do.  Some time ago my daughter found an article in her local newspaper about a legally blind man who paints.  Bless her heart, she was trying to inspire and help me.  And, she's right-on with her intentions.  And yet, here I am, afraid to get back on my bicycle, afraid to get back in the studio, afraid to do a lot of things that I haven't been able to do for a long time, but could do with considerable ease now that my eye movement has stopped.  My progress is tortured.  I have gone back to my job at the bookstore.  I went to a movie on Saturday, something I haven't done in years.  I've started sewing again, as well as making jewelry.  I can still drive, which is the main reason that I risked surgery.  As soon as the snow season is over, I plan to begin walking again.  Cripes, I could actually do that now if I dragged myself over to the mall.  I am the Queen of Excuses. 

 

So, exactly what is my problem?  Well, it doesn't take a rocket scientist to figure out that my problem is me.  The me that was caught in the thrall of my SOM for so many years. 

 

It is difficult, tough, tortured to move forward in my life sometimes.  But, I just have to do it.  Baby steps for a genuine whiner cry-baby.  I'm starting with today and I'm going to enjoy my day with my daughter and grandson.  We are going for her first ultrasound in this new pregnancy.  We're going to go to WholePaycheck for lunch and then some shopping for Easter and for all manner of useless things. 

A new baby?  What could be better!  Carry the ultrasound photos around with you and show them to everybody.  Even people who don't care.  This is to celebrate.

 

Honestly, Juds, I do think there is a lot of anguish--more than a lot-- in the SOM journey.  I believe that being, by nature, so introspective is a kind of gift and burden at the same time.  I always seem to need to look for ways to get out of that mode--to lighten up.  To QUIT thinking about things.  But, at my age, I doubt that I will have a lot of success. 

 

I will whole-heartedly agree that I struggle with why the heck my mind says I can do a lot of things--surely better now--and still there is a weight or a lethargy to doing them.  I think the disorder takes a huge toll.  When more people have had some kind of "fix"--be it either good or just OK, then maybe the aftermath or the "post traumatic" effect of it can be better articulated.  Maybe there doesn't even need to be an intervention to address that subject. The stress builds after you have lived with it jerking you around.  Is may be a cumulative effect of being over a barrel for so long.  Like it said, it takes a toll.  I think it's bigger than I thought it would be.

 

The journey is so different for each of us.  Of that I have no doubt.  We can understand parts of eachothers, but the size and depth is so individual for each and evey one of us.  So is the impact. I wonder how I will come up with a statement for the last topic--the one that deals with the totality of the SOM adventure.

 

I like being more tolerant.  I might have been as I aged, anyway, but I am guessing that having a disability has helped.  I don't know that it has made me come to peace with mine, particularly.  But it does help a little to put it into some kind of perspective. SOM, as you said, wraps you up.   Is it something that should be "better" than some other kind of devastating problem?  This particular one is just so constant, and it's intensity is so inpredictable.  It lies there waiting to ruin a great experience or an otherwise lovely day.  You put it well when you said you didn't realize how much energy there was in those earlier experiences and in revisiting them.  I didn't either.  Doing the new "directory" topics brings a lot of that back.  I won't be able to do the "drugs and surgery" one until I have spent some time thinking that through.  Too much baggage, still--and while it's a therapeutic process, it isn't easy.

 

I do see (for myself)  the sillier side because while nothing seemed even remotely funny at the time, in retrospect, maybe it was partly my reactive and kind of volatile personality that made it seem so massive in its frustration.  You know, my artwork is usually in a cartoon or line-drawing form, and it may be that's how I see my life.  When I set out to write a serious poem, it always turns out to be a parody of something or a bit of silly (but carefully metered) doggeral.  Is that my take on human existence and its foibles? I don't know.  It's my way of coping--not everybody's. That's the thing about human nature.  You are always trying to remember just exactly how things were--and usually they are colored by memory--better, worse, funnier, more maddening, whatever.  We each do it differently. It makes my own life that much richer for  hearing the experiences of others.  They don't have to be the same as mine.  They won't be, ever, anyway.  It's hard to go back in time.  If is for me anyway.

 

But, I finally got off my backside and joined the Y, and am now swimming three times a week.  That feels good for sure.  I have needed to do that for so long, could have, and just didn't.  The weather is yielding enough to walk, too, and that's going to help.   And it occurs that if one really would like some immortality, grandchildren are the way to go.  So, when they are here, I find I want to suck every jewel of a moment out of their presence--even when they are out of sorts or tired.  There is a stack of unfinished sewing to think about seriously, and PLANNING to do some renovating in the old kitchen will not get it done.  If I am ever going to enjoy it, I need to DO it.  Hopefully, I can shuck some of this SOM shell I have been living in for so long--or at least deal with the fact that it has had very large consequences for me.  Spring will help.  I will try to make "activation" my mantra for now.

 

I carry some real guilt about having a good--so far--result from my surgery, and I can't start to articulate that here.  It's too big a subject.  So is the understanding that while things are so much better visually, they won't ever be without the consequence of having muscles and tendons severed, and needing go make peace with various new coping mechanisms.  But that will be the next thing I need to dissect.  I will later.

 

The sun is out here--and it is actually 40 degrees.  The whole universe in these parts ought to be in a pretty cheerful mode.  At least the birds sound almost manic. The dog is in love with anybody who will take her around the block.  So, if I am going to "activate", that's a no brainer. Spring will help. 

Annie, I like the energy of our conversations, but you know, we rarely get this serious.  I really, really and truly hope that the tenor of this thread, and those to follow do not inhibit any of our members from joining in.  There are more light and amusing things to share, which is something that all of us do with great skill and enthusiasm, so it is my most sincere hope that that will continue, both here and on the rest of our site.  I'm sure that I can dig deep and find some funny and silly things to share as well, but they simply are not part of my awareness right now.  That's another story for another time, I guess.

 

However, when you write "I like being more tolerant," that resonates for me.  I agree that a certain amount of life experience hopefully brings that to us, but having a disability, even one like SOM, surely brings that into our lives with a vengeance.

 

Coping is as individual an experience as anything else, and I believe that we all do the best that we can in the moment.  That is also the reason that I believe that we simply cannot make the wrong choices.  Yes, we can do stupid, thoughtless and unbearably careless things in our life, but actual decisions are based on only what we know, feel and have previously experienced.  And, in that moment, we can only make the best choice/decision that it is possible for us to make.  Same darn thing for coping.  As long as we are not doing something that is not in our best interest, then how we cope is exactly how we need to do that.  Time, and the perspective that it allows, helps us to modify or change our coping strategies so that they work better for us. 

 

I do have a problem when you criticize the ways in which you cope.  We have stopped doing it for a while, but a friend and I have been giving journalling workshops for fifteen or so years.  One of the first things that we share with people is that their writing is best not overseen by their inner critics.  We tell them to just write, to not think about it or the process too much, forget about sentence structure, grammer and syntax, and, most importantly, to tell our inner critic to go away and do something else for a while.  I usually send mine to the library, or if we are giving the workshop in a nice location, I send it out to play in the sunshine or snow or rain or whatever.  I can't tell you how to cope, but I can assure you that a bit of kindness and loving support for yourself is a wonderful gift.

 

Memory is such a fragile and tender thing.  The past is always a construct of what I remember, what the other person/people remember and what actually happened.  One is as valid as the next, and the only benefit that going back in time in time could give us is if we could actually change something.  Fortunately, we cannot do that, and the past is what makes us the person we are today.  Again, I'm not a fatalist, but I really believe that each of us is in exactly the place in time and space that we are supposed to be.  I agree that that is not easy to accept when things are going all wonky and insane, but we're kind of stuck here anyway, so perhaps it's best to accept and honor who we are and where we are in our life.  So very easy to say and so very, very difficult to do.

 

I'm sorry to hear about your guilt, but you know, if it's working for you, then who am I to have an opinion about it.   I know from our conversations, Annie, that you were in pretty much the same place as I was.  What I can share is what I've learned from my surgery.  I have traded one disability for another, but the new disability is one for which there is some hope, no matter how slim, that something can be done in the future to help my vision.  With my full-blown SOM there wasn't a chance in the world that anything was going to improve and that it was surely going to get even worse.  Which brings us back to the whole guilt thing.  My biggest area of guilt is that I'm not doing anything with my slightly improved sight.  I'm just a lazy bum.  Not that I'm being judgemental or anything.

Oh, I forgot about Spring, which begins tomorrow, March 20th, at 1:48 a.m. if you live in New York or thereabouts.  That means that it will happen five hours earlier at 5:48 a.m. in Ireland...Hi Mel!!!!!!!!!!!!!!!!!

 

Anyway, get out there and celebrate the vernal equinox.  Eat some eggs.  Start some flower seeds in little peat pots on the windowsill.  Dance and drum in your backyard.  Light a candle to welcome back the warmth, unless you are in Austrailia where you are moving in Autumn, then make sure that your rakes are in good working order.  Rename your cat Aphrodite or Ostara.  Just make sure that you get all groovy whilst the sun is directly over the equator.

 

"Here comes the sun, la-la-la-la-la, here comes the sun, la-la-la-la-la, it'll be alright..."

That is such a good Beatles song.  It is just cherry.

 

Lazy bums don't run entire websites for a zillion people with a bizarre and rare disorder and keep things going like magic. 

 

 Now, see--here's where people ought to be allowed to just fly or drive or walk over to somebody's livingroom, maybe at government expense, pour a glass or lemonade or wine (my choice,)  and talk about SOM and all of its ups and downs.  And other stuff. It is so hard sometimes to do it in chunks in the computer.

 

Enough introspection for me for awhile.  I will turn to seeking advice about how to deal with the fact that I do not have any cats anymore, and sorely need some.  Or one, at least. Dear old Sissy told us very clearly that 20 was old enough and she did not want to be 21.  I miss her so much. That, I suspect is a subject for another thread.  Still, Aphrodite (or Jonquil) would be a nice name. 

I am so sorry to hear about Sissy.  Her adventures always gave a lift to my mood.  I didn't know her very well, but I will miss her. The loss of one's cat or dog or other companion animal leaves such an enormous hole in one's life.  Two of our cats died within the past several months, both of them chronically ill, but only one who was older.  You are welcome to make a memorial thread for Sissy.