Vent your frustrations here!!

[chris]

i have a handicap sticker that i use sometimes - depending on available other spaces and how i feel. i don't use a cane or other device but my feet can hurt so badly that the extra walking distance makes it really bad. my point is - i may not look like i "need" that space but there are times that i do. i agree- the person running into the store is one thing - but don't be too quick to judge.

[went]

I went to see a doctor on Friday who claimed he was a "specialist" in the disease that I had/have/whatever state it may be in. While there, he went on to tell me that he had seen ten patients.

Really? Ten? I've had sex more than ten times but I'm not claiming to be a gigilo or a porn star. Both very lucrative and respectful proffessions that I would be interested in entering (pun intended), but I'm not a "specialist." It's something I dabble in, but at this point I'd say it's more of a hobby and not something I've necessarily mastered.

On a semi-related note: When I was about to head out of the door to go see said doctor, the zipper on my coat broke. I went to The Burlington Coat Factory's website to see about buying a new one, and they had like fifteen coats listed. Fifteen of something constitues a factory?

[drummer904]

i hear ya Chris, sometimes i might judge too quick. its cool that you use it only when you need it.

[msweeney]

Okay, this is one of my favorites. People can be so awkward. They mean well, I really believe they do. They think it is incumbent on them to make you feel better if you share with them some of the hard truths that have occurred as a result of the tumor and/or surgery. So if you tell them about the pain you deal with or things that you miss or other hardships, a common response is "Well, your lucky...it could have been a lot worse."

Then, I'm thinking, "Man, why didn't I think of that? Gee, if that had occurred to me earlier, I would never have had any sorrow or bad feelings. I'm sure glad that person happened along today. Those little words of wisdom surely transformed my entire perspective." And the person who shared that wisdom is sure to think that they did their good deed for the day.

I don't mean to be cynical (all right Went, I do enjoy it a bit). As I said before it is just compassion misapplied. So I have learned to be guarded with these hard truths. Some people really get it and they are comfortable with the whole idea that they don't have to magically cure you or even take responsibility for your well being. Rather they are comfortable just listening to the hardship, being present with you and allowing you to speak truthfully; just holding that truth and being present to you.

I am blessed to have a wife that does that for me. None of us are perfect and she can slip up. That's so understandable because I slip up sometimes by forgetting that she has lost as well and that her life has been impacted too. She does so much for me and that really makes me push a little harder on those days when my feet are all pins and needles or my leg is on fire, or just fatigued beyond its ability to function.

One of the blessings that flows from this hardship is that I have become a better human. Far more humble and far more compassionate, two areas where I had a good deal of room for growth. Now I understand that sometimes I can't help or take away someone's pain. But I can always be present to them and listen and hold what they say with respect and compassion. I think that is what so many of us want. We, for the most part, are capable of bearing our burden. But on those days that we struggle it is nice if someone understands and empathizes with us. That is why I am appreciative of a place, like this forum and people like Joel, who give us a chance to "vent" with others who will listen and understand. God bless...

Matt

[ScrapHeap]

Very well said Matt. I believe most of us share a lot of the same feelings about ourselves and others, more so due to our situation. Being a gimp has forced to me evaluate and approach life in a quite different manner than I use to. Especially where others are concerned.

It is a pleasure to have a place like this to share our knowledge, concerns, accomplishments, failures and expectations. It is also very nice to have this special place to VENT! Venting can healthy. It's far better than a full blown eruption. Thanks Joel, for this special place where we can plant out mental land mines.

[Joel]

Hey, good ones folks. Seems to bee mostly guys though, who are venting. Does that mean that our women members have it all together, so to speak? I'm envious!

[chickiet]

OK, Joel - I wish I could say there were no frustrations for me to vent.

As for my husband, I'm pretty lucky -- he's been really supportive. He even admits he doesn't really understand / can't fully relate when I try to describe how things feel, etc. That's a lot better than assuming that he knows exactly how I feel. I think he sometimes forgets how I'm feeling since I try not to complain much, but I can't really complain about that - - it sure beats someone offering their two cents of a cure all of the time (see below).


I guess my "favorite" one is from the friends who, every time they see me, quickly ask - "Are you feeling any different? Do your feet still hurt?" And when I say that nothing has changed, they seem surprised, and then once again (for the umpteenth time) ask how long it's going to take for for the numbness and pain to go away from my feet. Then they go into all of their favorite remedies for what has ever ailed them - - "well, when my feet were hurting really badly, I did this or took that and it reallly helped. You should try that."

I can't get it through their heads that neurological pain is not like the normal pain they experience, and the remedies aren't the same either. And of course there's explaining that the deficits are what they are - I could potentially see some improvement over time, but I'm not expecting anything dramatic or anything soon.

I must say that I'm really glad I've never described the bladder and bowel issues - - who knows what types of "fixes" I'd get for those deficits!


I can also relate to Matt's venting about the people who always point out how things could have been worse and that I should be thankful of that (and therefore always happy and cheery). I agree - they mean well, but I'm much more aware than they are about how much worse things could be, but that doesn't make me automatically delighted. I've still got frustrations and bad days.

I've just learned which people you can really talk about things with, and which ones to gloss over with a pat response, as they either don't want to know how I'm doing or they really can't just listen without "curing" me.


So there you have it - - one woman's two cents!
Chris

[ScrapHeap]

Chris brought up some issues I believe are more serious than I tended to give them credit for in the past. Or maybe it's just the way I see and feel it. Even better, maybe it's what I should have felt but tended to play down so as not to offend others, or so I don't have to add to my own frustration levels.

I've found myself not engaging some at any level other than to push them away. Those are the ones, as Chris mentioned, ask about you in very general terms but really don't care much. A classic example from someone who fits this description... "Hi. How are you doing? Are you getting any better? Are you still in a lot of pain?" My Response: I'm doing great! I couldn't possibly ask for better. Pain is mind over matter. Since I don't mind, it don't matter. They give you that look of total confusion... PRICELESS!!!

And then there's the ones you don't really care for so much that ask the same. "Hi. How are you?" My Response: Why do you ask? It forces them to either be truthful and admit to being customary or come up with a lie..... Also PRICELESS!!!

For those that insist on pushing it, let em have it with as much bowel and bladder issues as you can possibly get in before they attempt a "customary" exit. I like going into DEEP details. This is the ultimate. Bet they think twice before trying that again. ;D

As cynical as this may seem, it does serve positive purposes. 1) It tends to make me feel better not wasting precious time on other's pettiness. 2) It tends to remove the "pity him" scenario quick, fast and in a hurry. 3) It enforces the fact that though I have extra obstacles to clear just to exist, I am not weak, inferior, or unworthy of equal acceptance. 4) Most of all it weens out a lot of preconceived notions. Imagine the advancement potential of a relationship with the one/those who get it - Those who you CAN discuss these things with who DO really give a rat's rump. I am blessed to have discovered and rediscovered those people in my life.

Not sure if any of this applies or even makes sense to anyone but me. If so, my apologies for the rambling.

[wobbly1]

Here is what drives me crazy :

My excercise routine consists of the gym, and I train martial arts. Invariably someone who doesn't know me will recognize that grim scar down the back of my neck and say " What the heck happened to you? " For some reason that really turns my crank.

Sometimes I want to tell a big lie- do you notice how someone's face will change when you tell them you had an SCT? Generally, I alternate between telling them I was attacked by a monkey, or that I was born with a dorsal fin.

[billanschell]

What I'm always having to deal with - ALWAYS - is people asking: "How's your back?" As if 1) It was back surgery, as opposed to INSIDE THE #!!!% SPINAL CORD! and 2) My pain were primarily in my back (where I actually have very little pain now).

I usually just explain very briefly that the residual damage is in my legs, because when you slice into someone's spinal cord you cause nerve damage, and the resulting problems wind up down below. I add that my legs are a mess; I'm on plenty of pain meds, which only slightly help me out.

Only close friends get more details than that, but even the short version gets pretty old. Still, the people asking all mean well (you can't blame them for knowing so little about this very rare condition), and I try to return good sentiments in kind.

--Bill