Very nice!
Missed the edit window: And for better or for worse, I’m glad you got to keep it.
Sucks that your coworkers don’t consider you capable of dealing with the horseplay of the gift-napping, though.
I KNEW I loved you!
Two close friends of mine recently were down about their lives, with no really good reasons, and got to talking about me, and how I manage to essentially be sunny and happy and at peace even though my life has been insanely difficult and painful, not only in recent years, but off and on since childhood. One of them shared this conversation with me and asked me how the hell I do it. I reminded her of something she actually already knows quite well: I don’t try to fight the pain off. Ever. In fact, I do just the opposite: I throw myself into it, I abandon myself to it. I like to say I roll around in it like a dog in fresh manure. I cry and scream until my whole body aches and I can’t cry and scream anymore.
And sometimes I have to do a lot of that. But what happens as a result is that I get to the other side of the pain much faster and much “cleaner” - no lingering bits. I learn enormous things about myself and the world, and I’m better than ever before for having navigated it.
So I NEVER try to comfort someone in pain by telling them it will all be better. That’s lame, pointless, and does nothing in the moment. I do whatever seems appropriate to let them know that their tears are good and welcome and don’t make me the slightest bit uncomfortable - I encourage them to cry, and the things I say boil down to: “You have every right to feel this way and I’m so sorry you need to…” and so often that’s all anyone wants: to have their pain acknowledged. To be seen. Telling someone it’s going to be better or otherwise trying to nudge them away from their feelings is often going to be exactly the reverse of what they need, because it denies their pain.
Pain is inevitable, but suffering is optional. Embrace the pain so you can skip the suffering.
To be honest, it might have just been that one coworker, and maybe she just wanted me to have something nice more than protecting my fragile feelings. Also, I could have easily stepped in and said something, but I chose not to 'cuz I wanted to keep the gift!
To those people, if they really want to take the time to understand, you could send them off to read Where is the Mango Princess, a fabulous, funny and humane book that spells out exactly what you just said.
Families have a lot of conflicting and confusing advice coming at them after one of these life changing events. Sometimes it’s tough to know where optimism, encouragement and advocacy stop and feelgood bullshit begins. Especially when stroke advocates like Jill Bolte Taylor say things like, “Cheer me on. Expect me to recover completely, even if it takes twenty years!” Really, Dr. Taylor? It took me probably longer than it should have to come to grips with the fact that just because she recovered, doesn’t mean everyone, or even most survivors will.
Aw. Thanks. I love you too!
I’ve gotten more profound comfort from friends who’ve listened to me and said, “Wow, that . . . that just sucks. It sucks, you shouldn’t have to deal with it, but you do, and I love you. Goddamn, that just sucks.” There’s just no way to adequately communicate how validating that is.
And, since I really started to acknowledge just how much it sucks that the man who was my father while I grew up is gone, and his place has been taken by a shell of anger and hostility, it’s become easier for me to handle. Dad doesn’t hate me. Dad doesn’t think I’m crap. Dad . . . is gone. (It’s the brief moments when Dad reappears, only to be submerged again that really, really suck.)
I was looking for words to write in a card I was sending to my nephew 32yo boneshaker he’s in Craig Hospital with a SCI - T5. I needed the right words I googled for help - what not to say. Sdmb thread ?
Thanks Stoid
Let’s help Danny out @ gofundme
Read about them My nephews, brothers keeping the spins positive!
I know this is a zombie thread, I just want to speak on one factor that helps perpetuate the “you can beat your SCI if you just don’t give up!” It starts with the doctor who breaks the news to the patient. The doctor (rightfully) doesn’t want to instill false hope in the patient, so they generally tell them they probably will never walk again.
The doctor also knows that the very early stages of an SCI can see significant changes, whether thru a misdiagnosis caused by swelling of the cord or other ways in which the early diagnosis turns out not to be accurate. But these changes are rare and very, very unlikely and not at all worth the risk of false hope leading to devastation when it doesnt pan out. So, they tell the patient they most likely will not walk again and leave the miniscule chance of misdiagnosis to be a stunning, surprising piece of good news to the patient if it were to happen.
This leads to the occasional patient who does recover, despite being told they will never walk again. So they attribute their recovery to something special they themselves have done or possess (unwavering determination, devout prayer, etc.).
This in turn leads to other people believing (or wanting to believe) that never giving up and always working towards getting out of the chair does work if the person is strong and determined enough.
I think this borders on tragic. The doctors are doing the right thing with the patient, yet what results is this mindset that getting out of the wheelchair is the one (and only) thing that the patient should focus on. If you dont get out of the chair, like that other guy did, it means you didn’t work as hard for it as he did (and not the truth which is the other guy had a less severe injury than initially thought).
This leads to circumstances I’ve personally seen too many times: the young man (most sci patients are young and male) never living their life and growing into a happy person because they are deadset on “beating” their injury. It’s heartbreaking. They’ve internalized the message that life from the vantage point of a wheelchair is simply horrible and subhuman. Ironically, that’s what their lives are often turned into.
Media is culpable here too. How many times in shows, movies, etc. has there been the “feel-good” story of the brave, strong young man who never gives up and manages to beat his injury and walk again? Too many times. On a societal scale, this is what helps give people this mindset. I don’t know what the solution is but I do know that it should be different. It angers and saddens me.
Short thread but one of the best I’ve read here.
Your link sent me somewhere I didn’t want to go.
Seven year old link.
Very welcome, and I have absolutely no idea why or how I saw that you had revive this since I am almost never here. I think on my iPad my fingers fumbled on an ancient link. And I’m glad.
I thought perhaps you might enjoy this LA Weekly article from a few years ago about this young man, inspired by his appearance naked on the freeway in his wheelchair, photos of which are included in the article. He also did aReddit AMA : "I’m Xander Mozejewski aka The Ridiculously Photogenic Nude Wheelchair Guy
Several years ago my wife was diagnosed with stage 3 non-hodgkins lymphoma. Fortunately she survived. I heard a few lame things, but the best I heard (seriously and non-sarcastically) was from one of my superiors (I was a Lieutenant in the Cdn Navy at the time), a Commander. He simply said “it really sucks doesn’t it” with a shitload of compassion in his voice. Seven years ago and I’m still moved when I think about it. (military people IRL aren’t like TV and movie military people - we’re not a bunch of heartless robots)
For those who don’t know what to say - just don’t bullshit. If you don’t know what to say, even say “I’m so sorry to hear about this and I really don’t know what to say but it must be horrible for you.” FFS, don’t say that it will get better, or if someone died, that they’re in a better place, or that God has special plans for them, or at least they didn’t suffer, blah blah blah. That crap is just pure evil.