Well said, Juds.  'Nuff said except that I agree.  All of our good days are different.  All of our bad days are different.  We each have a different level of tolerance or frustration.  We each have the right and obligation to handle our disability in the way that is best for us.  Once I got to a point where I could state firmly that SOM is, in fact, a disability of consequence, it freed me to start making decisions about it.  And then, my decision had to be different from anyone elses.   What we emphatically do share is the ability to care for and support eachother.      Annie

Juds, forgot to say in my last message how much I appreciated you opening up and sharing with me.  I completely understand what you are saying about the antidepressants - starting taking them shortly after my failed back surgery last June.  Also, I understand the cold temp and icy road conditions - I'm a Canadian!!   I have spoken to the neuro-opthamologist about surgery as I would be all for it.  To me it is ridiculous to be subjected to all of these medications that can damage other parts of the body and leave me feeling brain dead especially in combination with my pain medication for my back. The doc says that surgery would be a last resort and I must try all possible medications and combinations of medications first. 

 

I guess I am feeling really sad and angry that my age (32) so much has been taken away from me.  I thought the back problems were more than enough to cope with and then this.  My thoughts on Juds comment re Tony's comment is that I guess we all have it rough in our own way it is just our coping strategies that get us through.  I have a friend who is legally blind - has her own business, raises four children and is such a positive woman.  I feel such guilt for being miserable about my distorted vision - at least I have vision.  But on the other hand, when a friend says to me that they feel guilty complaining of a backache because they know mine is so much worse I reassure them that their pain is real and valid.  What I am realizing that I need is some coaching with coping.  Decided I'm going to see about getting some professional help to work through some of this sadness and anger.  Hopefully it works.  If anybody has any strategies they find useful please share.  Having a place to just write this helped. Thanks again everybody for the kind words.  I printed off the SOM Inner Warrior picture (hope that's ok) and put it on my fridge!  Kerry

Hi, Kerry and Tony,

 

Ker, you strike a chord with me since we seem to share very involved back problems, dark and deep winters, SOM, and the feeling that there are about 100 or more horrid medications lurking out there that we "have not yet tried"--none of which is going to help, and all of which will do their share in attempting to make our brains into mashed turnip. (Some for eyes, some for backs, all hard to take!) So, I am collecting some thoughts on that and will share them later.  I doubtless share too often, but it always seems that there is a lot to say and darn few of us out there to share it with.

 

But, Tony, I really can also relate to what you said about feeling as if you hardly had any problems since there are some folks whose lives have been blown to smithereens by this disorder.  About half of my job--which I held for 40+ years--was to act as a team member to qualify or not qualify kids from ages 2-21 for special education support.  (The other part was referral and treatment.) We were always needing to quantify "how bad was bad" in order to meet criteria.  Believe me, there were many times--expecially with a good team--that we worked together to stretch things enough--just enough.  We KNEW the child needed help--knew he or she qualified--yet had to search for the criteria that would be acceptable to the distict and the state.  So, I got used to quantifying things that are mighty hard to measure:  extent of disability, emotional uproar, family function or dysfunction, mood, intelligence, etc. etc. etc.  When the criteria just weren't quite there, we also had to help parents and colleagues to understand why.  Again--quantifying.

 

That, plus who I am, made me think often of my SOM in a measurable way.  I'd read that someone had lost a job, or had to get rid of their car, or could no longer pursue a beloved hobby, and think, "Man--I should stop whining.  Here I am, working, and I think I have it bad. It's really not THAT bad."  Again--quantifying my problems and coming up with a "not good enough to howl" label.  As I think it over, I had a job that allowed me to function in many settings so I could keep it, gave up hobbies so slowly that I forgot (almost) that I had loved them, and found ways to cope that more or less worked.  I also did it pretty much by myself since key members of my family did not want me to pursue the surgery angle and they were adamant.  Obviously, I did cross that bridge, eventually.

 

Having taken those long drives many many times--head jerked back, visors pulled askew so I was getting the least possible light, hat pulled down, sunglasses on in cloudy weather, and often, heart in throat, I have indeed been there.  How I managed to rationalize that since I had made it "safely", I must have it pretty good is kind of hard to see in retrospect.  But I did.  So, just so you know, I do get how you'd feel that way, too.  With the eye fixed, (bad pun coming up) I do see all this a lot more clearly now.  I didn't before, and couldn't have.  You are a great coper; sharing your coping tricks will be helpful to everyone.  So, please, keep figuring out what you do to keep on going and don't worry about how big or not big your problem is.  When the size of an individual's problem stands up and smacks them down, then it is too big.  And, like we said, it's different for everyone. When did I figure that out?  Not till it happened. 

 

Annie 

Thanks for all the supportive posting for our new members.  It is true that we all have our own levels of tolerance and moment specific ability to cope.  I believe that this conversation is helpful, and I also believe that it dances around a more important core issue.  I don't want to belabour this or make too fine a point of it, although I doubt that's going to stop me.

 

Perception is reality. 

 

If we choose to compare the manner in which our symptoms affect our lives with how another person's symtoms affect their life, we fail to honor our own experience. 

 

Comparing (which is a seductive way of judging) my suffering to that of another will likely lead me in the direction of becoming a nicer person, a more humane being.  Probably.

 

Fostering that kind of perspective might even be good for me, might lessen my tendency to be self-absorbed and whiney. 

 

But, the fine point of this is that for me, not judging myself, my experience or that of another person, not comparing the disabling aspects of how my symptoms manifest in my life is the key (once again for me), and is the most honest and supportive way for me to live with my SOM. 

 

I know that this might seem like nitpicking, but I want to help you understand that I believe it is healthier to accept and honor that my disability is exactly and seriously as bad for me as yours is for you, completely disregarding the specifics of how either of us tolerate a particular thing or at what level we find our ability to cope.

 

Yeah, I know that I'm a pain in the patootie about this subject (amongst many others as well, I'm sorry to admit), but it seriously pains me to read when someone minimizes the disabling aspects of their symptoms whilst comparing them to those of other SOMers.

Kerry, thanks for the understanding.  It is difficult to share that kind of personal information, but, frankly, I didn't really take any risks doing so.  If everyone doesn't already know that I'm certifiable, well, I guess you really can fool some of the people all of the time.

 

With all the back problems everyone seems to have perhaps we should add that to the list of suspected triggers, eh?  (That was a little Canadian pun.  Very little.  Tiny even.  See...there it goes...>>>>>>>)

 

Pain is pain and when we're hurting there it doesn't serve us to waste energy on comparing our pain to that of someone else.  Please understand that I am not advocating that we become immune to the suffering of other people.  I merely want us to honor our own experience and not minimize it with pointless comparisons.

 

And, yes, you are welcome to personal use of any images I create for this site, especially one that I made specifically for you.

 

And, you probably aren't going to be thrilled about this, but I think that nearly everyone here would agree that your doctor is giving you good medical care when he/she tells you that surgery should be your last consideration.  The meds are a huge pain in the patootie, and you have the additional concern of interaction with meds you are already taking, but they can give decent relief, at least for a short time.  You just have to be a patient patient and try different things, making sure that you give your body time to adjust to the med (which can be a couple of months or longer) and for you to find your effective dosage of the med.  Sometimes you have to use a combination of meds, and your doctor will be a good resource for you in that area.  Jen and a few other members have found good relief with a combination of meds, so please take an opportunity to address that aspect with your doctor.

No, it isn't nit-picking, Juds.  But it's quite specific. Disability is such a personal thing, coping is too, and finding the heights and limits of our tolerance-- equally personal.  It's just a little disappointing that such an interesting conversation, and such a wealth of ideas can't be shared around a table along with a large pot of coffee or a bottle of something stronger with a tub of ice cubes to share.  Add a bowl of chocolate-covered raisins for strength, and we'd have it made.      Annie

 

I totally agree Annie.  That would be fabulous!!!  Kerry

Don't you think it's human nature to compare?  We do it all the time --even when we are little kids.  It gives us some perspective abut how big the world is, and how hard or easy things are, even how to keep safe.  It's very hard to escape.  I wonder how many times a day we all do it.  It can inspire, too.  When you do look at how some people cope with amazing circumstances, it does give you a kick to keep going.  I doubt that I will even totally escape from looking at situations as they line up against my own.  

But when things really hit a wall with a disability, and we are faced with decision-making (given that we have something that we actually CAN make decisions about to some extent), I think that's when comparison goes out the window. We come face to face with ourselves--with our own limits and our own boundaries, and the comparison just stops.  It isn't useful anymore.  It's just me and my inner resources, and what I need to do or don't need to do.  That's when it's a bad idea to try to go ahead, with the size or extent of other people's problems--or my perception of them-- as a basis for my decision making.  Interesting that when it's happened to me, there has not been conscious effort to step away from the measuring thing.  It's just happened.

 

Right or wrong?  Probably neither.  It's just the way one person sees things.             Annie 

Uh...uh...uh...I don't scold (at least I hope that I don't and if I do, someone please hold an intervention for me), and since it came across that way, please accept my apology, because I sincerely did not mean it that way.  The mention that I made was in reference to you, but you're such a goofy and funny person that I guess I thought that you would immediately get the joke.  Sadly, even in my offline life I find that I sometimes have to explain my jokes.  Quite frankly, if I were ever to chastise anyone, it would not be you and, besides, I would never do that anyway.  If I think that someone is experiencing difficulty, I would always, always and ever always do it directly and certainly not on this site.

 

A good example of having to explain myself is what happened this weekend.  I've been away since Friday morning, giving a workshop.  The location was at one of my favorite places and I often wish that I would have the time to go there without any work to do and spend a weekend simply luxuriating in the amazing and spiritual atmosphere.  I know that I would be a better human being if I had regular opportunities to let that place work its magic on me.

 

Anyway.  On Friday evening I was preparing to set myself up in the reception area to welcome and settle the workshop participants into their guest rooms.  There was another group (also regular visitors to this place) sharing the geography with us and I forgot that that particular room is used for their welcoming reception.  Two of the three people just hanging out there are old and very good friends of mine who live and/or work on the grounds.  The third is the new-ish director (M), of short acquaintance.  When I realized my mistake, I went into a small performance about oh, dear, where can I put my stuff, how will they find me, blah, blah, blah.  One of them told me to just find another place and the other friend sat forward in her chair and shook her finger at me.  Poor director guy (M) just sat there and when I plaintively said that I would sit on a bench in the hallway, he told me that he couldn't allow me to be the poor, little apple waif.  I don't see them for months and we just fall back into our easy and smart-aleck relationship.  This morning my friend told me that after their little reception M was rushing around to clear out their stuff and when she told him that she would do it later, he told her that he needed to get the room ready for me.  My friend totally cracked up and told him that I was perfectly fine in the next room and that the three of us had been playing just like we always do. 

 

Well, M now has a clue about my PIA potential, but also that I am completely harmless.  Now that I think about it, being all that harmless probably isn't a quality I am glad to have.  I would love to be thought of as a dangerous, thrilling and exciting person.  Well, maybe in my next lifetime.  However, it illustrates how easily we can be misunderstood, even when two thirds of the people in the room get you and the other third doesn't.

 

The best part of the whole thing, aside for torturing M, is that several members of the other group are also longtime friends, most of whom I haven't seen since the last time we were in Ireland.  So, I was the beneficiary of several little cups of a truly delicious red wine, but I declined to share their snacks because I had just finished dinner.

 

You go ahead and compare your pretty little head off, any time, any place, any way.  If I respond in a weird way, just ignore me.  Everyone else does.  Just ask Jen and Kel.

 

So, the purpose of this long and mostly irrelevant post is that I used the fact that you were just one of many persons beating yourself up about how insignificant your symptoms were as simply another opportunity to remind all of us, myself included, that we owe it to ourselves to be self-supportive of what we experience.  I want to hear how you are doing.  I live for it!

 

I know that you were being empathetic and supportive and we luv ya for that wonderful quality.  It's what support group members, and true friends, which is what I believe that we are, do for one another.  Thanks for being such a good friend.

 

And, not to belabour the point, please accept my apologies for being a smarty-pants at your expense.  Puh-leeeeeeze.  I'm a nice kitty, really I am.

Please don't hold back.  Don't hesitate.  Don't self-censor.  Don't stifle.  Please.  Gosh, I would hate to see you stop leaping to conclusions, or much of anything else that requires some sort of leaping gesture, since your SOM has already stripped you of so many other worthwhile activities.

 

I'm glad that you are in tune with our general wonkiness and one of our most sincere precepts is that (in addition to a broad acceptance of leaping) we are, to a soul, quite adept at being misunderstood.  However, we make great attempts at communication and clear talk about resolving said misunderstandings.  If I, in my uncontrollable desire to turn even the most insignificant thing into an opportunity to write about it, and then stumble (yes, an SOM pun) over the twitching toes of someone, it is essential that everyone always feel free enough to call me on it.  Which is what you did and what I needed to hear from you. 

 

This whole SOM thing carries a lot of energy for me partly because I suffered through nearly twenty years of misdiagnosis and dismissal from the medical establishment, and partly because SOM has had such a disastrous effect on my life. 

 

Before I decided to have surgery last year, I was on the cusp of never being able to leave my house without depending upon the kindness of friends and family to take me somewhere.  I wasn't going to be able to drive any longer; I had already given up riding my bike, and we live in the town next to the middle of nowhere, without public transportation.  Even walking was hazardous.  I knew that wintertime was going to be my Waterloo and that I would be forever housebound.

 

That is why I am so excitable about how we sometimes fail to practice self love and support.  It is also why we are susceptible to being misunderstood.

 

And, because of that I hurt you and made you feel vulnerable and reticent about expressing yourself, and for that I am sincerely and humbly sorry.

 

And, as far as this past weekend went, I heard from my friend that M (the director), not knowing me all that well, and certainly not aware of what a smartaleck I am, was a little concerned with how harshly and without sensitivity my two friends seemed to be responding to my sassy performance.  It is funny now, but I'm guessing that it wasn't all that hilarious to M.  I probably owe him an apology, too, or at least a cheesecake.  With my recent luck he will probably turn out to be lactose intolerant.

 

So, no stifling, OK?

 

The whole love thing?  Backacha.

Tony,  

 

A thought so dear to my heart that it deseves a new thread.  But it is you bringing it up.  Might I suggest that you grab the baton  start a new "Images" thread?  Being a dedicated misfit myself, and a lover of language, and fully sharing the uncontrollable desire to write about everything, my contributions could be excessive. Just a warning.

 

I've thought a lot about the whole SOM thing as a string of interrupted episodes of stillness and the jarring warp of something that you dearly want to perserve visually.  It's the ever-lurking expectation that a scene or an experience or a memorable moment will be shattered by that jagged teeter-totter sight.  I said somewhere, sometime earlier, that my photographs are so pleasing because they saved the actual scene for me without eternal movement.  It's almost a year since my surgery and I realize there probably won't ever be a time when the subliminal fear that it will return is really erased.

 

It could be a thread that we return to whenever a particular situation seems to deserve some articulation, or some good descriptive words pop into our heads.

 

So, how about "Images" or another suitable title?

 

Annie