Reeve Foundation Paralysis Community

Imaginary Friends.  That is the term my teenage daughter teasingly uses for my internet friends.  People I have "met" on boards like this and correspond with.  But I find it interesting that I am able to talk about issues with people I only know online far easier than I can talk to people I know in real life.  I know part of it is that you guys "get it".  We all have some significant knowledge about sci, whether we are the sci'd person or a friend or caregiver.  But I have people IRL that get it too.  Part of it is that I try to shelter them from some of my issues.  Pain basically.  I usually try to hide the amount of pain that I am in from my family.  I am not always successful, my daughter can sometimes tell by my breathing, but we don;t talk about it.  And most of my friends have no idea.  But I will talk about it online. 

But does anyone else find this?

I debated about where to post this, but I thought it would be interesting to get Dr Gottlieb's take on this as well, so I posted it here. 

---

T 7-8 since 2005

It helps to have people who "Get It", cuts through the crap real fast. I have the same issues with pain. I hide it well but folks don't begin to know the level of pain I work through daily----18 years worth begins to take its toll.

It sure beats the alternative though. 

Your daughter's use of the term "imaginary friends" in that way makes me smile.

But to be honest, I do think there is some element of truth in that term for me. Well "imaginary" might not be the exact word. But it does often feel that I live more of my life online and interact with people more often and more easily through things like emails, online chats, or forum sites such as this, than I do face to face or even on the phone. That isn't really true though, because I do many other things than spend all my time online. Of course there are many days, especially  if I am stuck in bed because of my health or the weather is bad and prevents going outside, I probably spend more time online that is good for me.

But it isn't always a bad thing though, at least not for me. I think it is very difficult for many people I know (friends and family, both) to understand and accept what my life is now. That failure to understand doesn't come from a lack of caring about me,  but it does create a certain level of discomfort and disconnect in many of my relationships. Especially when we are in the same room. It is often awkward for them and for me and I admit I usually find it very painful to deal with. Too painful. Everybody is self-conscious and conversation gets reduced to nervous small talk. It just seems easier for everybody if we interact online instead. Even when we live close by.  That way I am still in contact with others. I feel isolated for sure, but I guess its a trade off on the awkwardness of personal interaction that has come out of my injury. 

I know that is different from the kinds of friendships and relationships you are talking about sjean. But to connect it back to the concept of "imaginary friends," as I began my relationships with my "real life" friends shifted to taking place more online than in person, I started to realize that relationships I was building elsewhere online (such on sites as this) were becoming increasingly important to me. I no longer differentiated between "real friends" and "internet friends."  And in some cases these internet friendships eventually became relationships that meant a great deal to me. The fact that I would likely never meet many of the people I was becoming friends with didn't seem important. The emotional connection was what mattered to me.

I am rambling and forgot where I was going with this. Last thought I have is about the notion of connecting online with people who "get it" when it comes to life with a spinal cord injury.  That really is important to me and it can be a big relief and weight lifted when I don't have to constantly explain things. Explain myself. Things like neuropathic pain, the loneliness associated with my disability, the stress of requiring a caregiver to do things for me that most people don't even give a second thought to--these are things that can be very abstract and I do understand why some people in my life just can't seem to understand. However like sjean says, I do have some friends and family who do actually get it. But I am also usually reluctant to bring up things like my pain levels or loneliness with them. I guess I don't want them to worry or be stressed or make them upset. And they will rarely bring it up with me, probably for the same reasons I don't mention it to them.

I lied, I have one more thought. I think interacting online does something else for me that I just thought about. I sometimes post and chat on forums sites that have to do with different interests I have. Computers, books, history...whatever. But while I come to sites like this because I feel people might understand me better because of the commonality of spinal cord injury, on these other sites I rarely mention my disability. So that is one other thing online friendships allow--the friends I make on those sites just accept me as somebody who likes to read or whatever. There is no awkwardness because they just don't know anything except what I tell them and that gives me more control that in person interactions when the wheelchair and ventilator becomes the first thing people see and some can't seem to get by it. And maybe in someways these kinds of interactions allow me a certain freedom and form of escape--and acceptance--that I don't often feel. If there is one means of going back in time and regaining some elements of my pre-injury life this would be it. Wow I wrote way more than I planned.

 

 

---

"Don't be silly, Toto. Scarecrows don't talk. "

PRC_Bernadette:

It helps to have people who "Get It", cuts through the crap real fast. I have the same issues with pain. I hide it well but folks don't begin to know the level of pain I work through daily----18 years worth begins to take its toll.

It sure beats the alternative though. 

It seems that most people attribute payalysis to "no feeling = no pain".  I know I used to.  And while I am all for educating people about SCI, I don't go around announcing to one and all "Hey, I am dealing with level X pain today."  In actuality, I suspect that only my mom and my youngest daughter can see through me and actually tell what sort of day I am having if I don't want them to.  Even my husband has sometimes expressed surprise if I let down my guard at the end of a bad day. 

You are right, it sure beats the alternative!  And luckily for me, they aren't all bad days.

(Haiku, I will be back to respond to some of what you have said.)

---

T 7-8 since 2005

I have been meaning to come back and reply to your comment about how interacting on the internet.  It does put you on equal footing with everyone else ..... the disability doesn;t come in to play unless we chose to reveal it.  It isn;t something I had thought of.  I think, being a para, mine isn;t so "in your face" all the time.  Once we get past the initial stages, it gets pushed to the background.  Especially if the situation is sitting down ..... movies, going out to dinner, playing cards.  I can interact in person w/o my having to be considered. 

---

T 7-8 since 2005

As a psychologist when I see the title "imaginary friends" I begin to think we are going into a whole new neighborhood here! When I had my accident I was a 33-year-old man and had been married for 10 years. My wife was at the hospital every day. Every doctor visit or setback or even change in my therapy and she was there. When I went back to work and was terrified, she understood. But then, about a year later something happened and I can't even remember what it was. It doesn't matter. But I realized at that moment that she really didn't fully understand what I was living with. She knew all the details, but she didn't get it. I cried a long time once I realized that my best friend and closest companion didn't get it. So our online friends get it. I noticed that I use far fewer words in these posts than I would ordinarily because you guys "get it". 

But what is it really that you get and why is so damn important to all of us?

Several years ago while waiting for a red light, a homeless person came up to my van with a cup in his hand. When he looked in and saw what was going on, he put the cup down and the two of us made contact and nodded to one another. I think we both felt as though the other one "got it". So what did we get, this young black homeless person and this older white middle-class quadriplegic? I think we both understood in that instant about being disenfranchised, about having people look at you and not see you. We both understood suffering and solitude and we both saw each other's humanity. Think I am over reading just one small eye contact? Maybe. So I know that very few people can really relate to the dilemmas of Texas catheters coming off or dysreflexia or what we all go through on bowel day. But for me, what is most important is being with someone who understands the emotions of living with what we all live with. That might be what we are looking for.
And why is it so important? One of my central organizing principles in my life is my belief that being known for who we are is more important than even being loved. Because if we are told that we are loved yet we don't feel fully known, then we find a way to invalidate that love. Which brings us back to the pain of alienation and what happens to us when people look at us and don't see our eyes.

And one more thing about the Internet. I've been hosting a radio show on WHYY FM (90.9), Philadelphia's NPR affiliate for over 20 years. When I first started doing the show, I was surprised by how open and honest people were on the radio. Very quickly, people were telling me things about their lives they had never told anyone. I think it's the anonymity. In order to be known, we have to look in someone's eyes and looked deeply. But that is a very intimate experience. Talking about your life on the radio or online is a way of sharing one's life without the risks of intimacy. And that's good news and bad news!

Take care

Dan

---

Daniel Gottlieb Ph.D.
www.DrDanGottlieb.com

 Because if we are told that we are loved yet we don't feel fully known, then we find a way to invalidate that love.

This is a bit off topic but thank you for the above sentence. It was like a light came on and I realized why my marriage was a failure. I never felt validated or known and could never express what it was I wasn't getting.

 

Now back to the topic. I have also called the internet my imaginary friends. I said this because once I talked to someone online and realized after a while they weren't what they said. I learned that people online can pretend to be anything they want. How do you know who you're really talking to? You don't. This is why I avoid chat rooms and things like that. I have grown close to some of these imaginary people and don't hink of them like that anymore. When I have been hurt by someone I thougth was my friend online and realized they were just someone out there in cybersapce it surprised me. I wonder how can someone hurt you that you never met and may not even be real?

I also agree with the things said here that maybe people have a better cahnce of grasping what you say, having been there already. I could come on here and say I had a "bad chair day" and most would understand. I could just say I couldn't get in a building and you would get that sickening angry feeling of being shut out. I wouldn't have to expalin the ramp, steps, etc as I would to someone else. It is a different kind of connection, sometimes imaginary, sometimes too real.

---

I just came back from yesterday.

My daughters grew up in the my-space era.  I was very careful to drill in to them that they had no way of knowing that the person they were talking to online was who they claimed to be.  Yet the first time I ran into it, I was stunned.  It wasn;t directed at me, I hadn't become close to them or made friends.  I had just responded to them a few times on a message board.  Yet I found out they were a complete fake, posting pictures of someone they weren;t, making up tales.  Whether this was for their own entertainment, or there was something deeper going on I don;t know.  But it has colored my expectations.  When I "meet" someone online, I  am often suspicious of them until I get comfortable with their presence.

---

T 7-8 since 2005

ifonlysandwhatifs:

 I have grown close to some of these imaginary people and don't hink of them like that anymore. When I have been hurt by someone I thougth was my friend online and realized they were just someone out there in cybersapce it surprised me. I wonder how can someone hurt you that you never met and may not even be real?

I have spent a lot of time on other forum sites over the past 10 years or so and I am constantly bewildered and saddened at how badly some people will treat others,  especially those who are new members and have come to forums seeking support and advice. I don't know why, but it seems to me that some feel they can say whatever they want, without thought to consequence, just because "it's only the internet."

Anyways I do have a point to this and it is connected to what you wrote above. I can remember the first time I was at the recieving end of the wolf pack mentality. It was long after I was an established member on a particular forum  and I didn't expect it at all. I was ridiculed, called names, told I had no right to voice my opinion or post in the thread if I wasn't going to agree with everybody else, and basically made to feel like I was just a piece of garbage who didn't matter. Once one person jumped on me, there was no stopping and the rest quickly piled on the verbal abuse and ridicule. It was really terrible. And it snowballed as more and more joined in on the "fun."

What hurt the most was not what was being said to me, but that many of the people making the hurtful and ridiculing comments were people I had considered friends. And while I realize that the mob mentality spreads quickly and some people will join in just because they can, it was an incredibly painful realization that people I liked and respected and would never consider ridiculing or otherwise causing hurt to, were joining in at my expense. And suddenly a realization hit me: I cared more for these people than they cared for me. It was such a hurtful understanding to come to. For days I was upset and then what you said above dawned on me: why was I so hurt by what a bunch of strangers on the internet were saying to and about me?  I tried to tell myself it didn't matter. That they were just people that I would never meet and that I had plently of others in my life who cared--I didn't need them. But the truth is it did matter and it hurt me very deeply, maybe as deeply as if the comments had been made by my "real life" friends. I think what it boils down to, at least for me, is that once I make a connection with somebody--even if I just know them online--I invest emotionally in the relationship and the hurt that can result from that investment is just as strong as it would be in a tangible "real life" friendship.

But I guess the flip side of the hurt that can come from online friendships is that they can also bring me a lot of happiness and many have come to mean a great deal to me. I guess I am just way too idealistic or hyper sensitive when I wish that some people would not treat the potential for hurt on the internet so lightly.  We never know who reads our words on forum sites like this. It might just not be the person being targeted who feels the sting.

---

"Don't be silly, Toto. Scarecrows don't talk. "

Haiku,

famous psychoanalyst Carl Jung once said "that which we hate are parts of ourselves, and if we loved all parts of our personalities, we would hate no one." So that says a great deal about bullies, cyber bullies and people who hurt people in general. Personally, I think that's the problem with this whole business of "love thy neighbor..."! I think we already do love our neighbors (or our cyber friends) as we love ourselves.

So what now that you have been hurt? Well, your instinct would have you do what you need to do to avoid being hurt in the future. Well that's pretty simple, all you have to do is trust no one and never get into a relationship where you care about someone. Do that and you will never be hurt again!

So let's think about what happened to you during the course of these relationships. You felt trust for these people and you cared for and about them. I'm sure those feelings enabled you to feel comforted that your network was expanded. All of these feelings were true and real and in fact your network was expanded. And then they hurt you. And that hurt brought a sense of betrayal, perhaps anger and shame and maybe even sadness. And those emotions are true and real as are the losses.

And when you heal, that process of anger, second-guessing, sadness, regret and grief will also be real.

Dan

---

Daniel Gottlieb Ph.D.
www.DrDanGottlieb.com

So what now that you have been hurt? Well, your instinct would have you do what you need to do to avoid being hurt in the future. Well that's pretty simple, all you have to do is trust no one and never get into a relationship where you care about someone. Do that and you will never be hurt again!

To be fair, I never said I was going to do that. That really wasn't the point of my post--that I could no longer trust anybody or wouldn't develop any more relationships to save myself from potential hurt and disappointment. I will admit that since this painful experience, when it comes to the internet, I have found myself growing increasingly wary that I will be treated the same way I treat others or that others might care about me to the degree I care about them. I think it definately has made me more reserved in building up new relationships. But it hasn't meant that have sworn them off for good.  If I had, I wouldn't be posting in this thread. (Although I admit that there are times when just swearing off all relationships of any kind would seem to solve many of my problems lol).

But while this was a painful lesson, it might not necessarily be a bad thing considering that I was likely too trusting and open with strangers on the internet before it happened.

 

"So let's think about what happened to you during the course of these relationships. You felt trust for these people and you cared for and about them. I'm sure those feelings enabled you to feel comforted that your network was expanded. All of these feelings were true and real and in fact your network was expanded. And then they hurt you. And that hurt brought a sense of betrayal, perhaps anger and shame and maybe even sadness. And those emotions are true and real as are the losses.

And when you heal, that process of anger, second-guessing, sadness, regret and grief will also be real."

Yes I agree that the emotions and losses were very real to me. Much more real than I expected they would be. That was why it hurt so much. I guess that was my point, that it can hurt just as much whether it is people you only know via the internet or those you know in real life. For me the line between these two groups isn't as clear cut as I once thought. And that probably is a direct result of the fact that since my injury I have been very socially isolated due to physical factors and the internet very often feels like my only outlet to the world. I have mixed feelings about that but it is an issue for another thread maybe.

 

---

"Don't be silly, Toto. Scarecrows don't talk. "

Dear Haiku,

I am terribly sorry if the comments you highlighted in the opening of your post were hurtful to you. My intent was to make those comments tongue in cheek suggesting that there really is no way to not be hurt in relationships. So I am sorry if I add it to your hurt. That's the problem with the written word.

As far as the other people are concerned, I have a Zen story:

a highly respected Buddhist monk was living in a village and in that village was a family with a beautiful yet rebellious teenage girl. She came home pregnant and refused to say who the father was. But after a great deal of pressure, she said it was the monk. Outraged, people in the village lost all respect for him. He said nothing. And when the girl gave birth, she was forced to move in with him as he cared for the baby. He went around the village and other villages begging for milk and food for both of his new charges. Several months later the girl couldn't take it anymore and confessed to her parents that the real father was another boy in the village. The girl and her baby moved out and still the monk said nothing. He understood that people's opinions can change from hot to cold based on things he has no control over. And the only thing that kept his life stable was his constant compassion and ability to offer lovingkindness.

I doubt you have been meditating in a cave for 30 years, but in order for you to trust someone and to care about them requires you to open your heart. When your heart is open, your soul is nourished. They heard you and you recoil and closed her heart. That is all very natural. And I assume you will be hurt again and you will recoil again. But please remember the lesson from the monk. When your heart is opened your soul is being nurtured and the more you are able to do that, the more happiness you will feel. (I wonder if there is a cave that has a wheel in shower?!

 

Dan

Daniel Gottlieb PhD

www.DrDanGottlieb.com

---

Daniel Gottlieb Ph.D.
www.DrDanGottlieb.com

Great Zen story. Some of my favorite lessons on living life come from the Tao of Pooh. The author breaks down life into the Pooh characters. It is both profound yet simple.

Dr. Gottlieb  I wasn't hurt by what you said.  I apologize for giving that impression.

 

 

Bernadette I loved the Tao of Pooh and the Te of Piglet.

---

"Don't be silly, Toto. Scarecrows don't talk. "

I totally understand all of what is being said here.  I have been an active internet user/chatter/poster since the early 90s and so I've seen pretty much everything it seems sometimes. 

 

When it comes to SCI though, I really do think it is more vicious.  I have witnessed (and experienced) several of the things haiku references, as have many of us here.  Dr. Gottlieb, your quote about loving oneself fully would lead to no hate - I think that is so very true.  And why I think that internet hatefulness is so prevalent on SCI sites and boards.  For those angry at their disability, turning it towards others is a far easier thing to do than to deal with their own feelings.  I also fully believe it is not conscious most of the time.  I doubt many people sit in front of a screen and say "I am angry at my injury and so I'm rant and rave about (fill in the blank, unrelated to SCI)".  That makes it even harder to combat becauase the surface conversation is then about (fill in the blank, unrelated to SCI) and the real issues of insecurity and self loathing and fear can't be addressed.  Combine that with its easy to have what I call 'internet courage', its a powerkeg of emotion and scary territory.

 

For this reason, I have all but totally retreated from public message boards on any topic anymore, but especially SCI.  I still rely on my wonderful incredible imaginary friends (I love that) - mostly those who I met on these public boards, but in private settings.  Its one reason I was reticent to set up an account here, but I'm going to wade in a bit here, stick my toe in as the tone seems much more civilized here.  Dr. Gottlieb, your posts have been really thoughtful, insightful and have been the main reason I decided to delurk and post a bit.  Your thoughts have been helpful to me as a caregiver and as a person.

 

I think I straggled away from the topic.  Hmmmm.  LOL!  Anyway, yes, imaginary friends.  The good, the bad and the ugly.  We could write a book eh?! :)