50 replies to this topic

[spinesong]

i am a nurse and what you call AB. but more importantly, i believe in treating all people holistically. that means approaching and treating others with consideration of all their "parts". mental, emotional, physical, intellectual, and even considering their past history, talents, personality, past hurts, mental disease ect.

we can't live in another person's shoes but we can chose to be more understanding than just judging someone's behavior at face value. we are more complex beings than that.

i am curious about another aspect of sci persons that i have not seen mentioned on the forum.
touch

there is more than enough discussion of sex but what about a simple hug or tender caress?

i know that i need a warm embrace from my family every now and then. to feel the warmth and pressure of their body against mine. it is so healing.

what is the experience of sci persons ?
especially those that have higher degree injuries....you may get bathed, transfered, examined, ROM, ect...but what is your experience with touch when it comes to just plain old tender loving care?

[spinesong]

viewed 70 times and not one reply?

is this a bad topic?
i don't understand.

[Adrian]

To me this topic just seems a bit wierd - sorry. That's the reason I read it earlier and didn't reply, but I'll give you my reason now because you asked.

I don't thinks it's a nurses' job to give hugs/caresses. I would find it very wierd for a person who I barely know to come up and give me a hug, maybe after a few weeks but even still I thinks it's a bit forward. The main problem is that everybody is different, and taking the same people(me included) on different days will have a different view on this - my post here: http://www.apparelyz...h...ost&p=23620 is an example of when a hug helped me.

It's not a hug as such, but the meaning behind it. For me a hug is nothing without any meaning behind it, and what's the point in hugging someone for the sake of it - I really don't get it.

What do you mean by tender caress?

[brookelynn628]

I think she's asking if people are getting the amount and type of physical contact that makes us all feel cared for and comforted. I don't think it's an issue of whether or not nurses or carers are giving this affection, but if SCIs are getting the physcial contact they desire naturally from their spouses, friends, and loved ones. Also, with limited sensitivity below the injury, wherever that may be, what kinds of affection and where feels best?

I hope I clarified for you, O. Is that what you meant?

[spinesong]

ok, i didn't want to limit the responses by asking cut and dry questions.
i'm not looking for an answer to a specific question of mine.
i'd just like to hear people's perspectives.

being touched is a basic human need. children do not thrive when they lack positive touch. in nursing school we were taught to be aware of the fact that the elderly are not touched enough and that we should not be afraid to hold their hands when talking or find some way of giving them human contact in the form of touching. it validates us as human beings. when someone isn't afraid to touch us, it says to our psyche that we are acceptable. if you question that, think of the "untouchables". we do not touch things which we cannot accept.


i am not saying that it's a nurses role to hug people. i simply mentioned that i am a nurse, which might explain my perspective and interest. i'm really thinking of people in relation to their loved ones. i wonder what role being hugged or having ones hand or body part patted or stroked (tender caress) has in the lives of those who have sci and their loved ones. if you can't feel or can't initiate a touch or hug, does that change its importance in your life? does it make touch more or less important? have you just resolved yourself to an existence without recieving tlc? what would you ask of your friends and family in the area of touch and hugging? from reading many posts on this forum, it is obvious that AB's are unsure as to how to physically interact with people who have sci. do we shake the hand of a paralysed person? is touching a friends knee when talking intently something that is taboo?

what is the point of touching/hugging just for the sake of it? then what is the point of stroking the cheek of a newborn? or feeling a certain fabric between your fingertips? there's always a reason behind those little things. we may not even be able to verbalize why but there is meaning. i think the thing is that you have to be open to the giver of touch. they might be trying to give you the gift of tlc but if you have strong emotional walls up, you will not recieve their gift.

maybe this is too deep and personal. but i hope it spurs people to comment. i mean, come on, a post about a guy with a hole in his head gets a dozen comments and people don't know what to think or say about touching one another?! i'm trying to not be dissapointed in the lack of depth going on here. please, someone, renew my faith.

[Joed]

Quote

what is the experience of sci persons ?
especially those that have higher degree injuries....you may get bathed, transfered, examined, ROM, ect...but what is your experience with touch when it comes to just plain old tender loving care?

I didn't reply because I have full sensation when being hugged, etc. But if I may...I believe that spinesong isn't speaking about a nurse hugging a patient, but rather wanting to understand more fully how someone with a high level of injury might experience an embrace, and whether the magical benefits of a hug are accessible to someone who can't really feel it. (How'm I doin', spinesong? ) That's how I read it, anyway.

A hug is a healing, nourishing gesture...our skin gets hungry for touch. I want to believe that even though one might not physically feel a hug, that somehow those intangible benefits of being hugged would be sensed at some level. Our bodies compensate...not always to 100%, but it does try different ways of going about the same things.

[spinesong]

[quote name='Joed' date='Dec 1 2006, 09:56 AM' post='23637']
[quote]what is the experience of sci persons ?


But if I may...I believe that spinesong isn't speaking about a nurse hugging a patient, but rather wanting to understand more fully how someone with a high level of injury might experience an embrace, and whether the magical benefits of a hug are accessible to someone who can't really feel it. (How'm I doin', spinesong? ) That's how I read it, anyway.
[/quote]

right on!

[Adrian]

Ok, I got the wrong end of the stick - that's why I asked for the clarification!

As I'm a lowly T8, paraplegic, I don't think I'm qualified to answer to question with the correct perspective.

[cdngrl]

okay... i m a c5 i dont really like to be hugged by to many people it may be a my mother/father didn't hug me enough syndrome but... i do beleive the body remembers touch even if the skin can't feel it. like, when someone touches the inside of my thighs even though i cannot feel the texture of thier hands or the warmth of the skin my mind responds to the touch and my body reacts to the memory of the touch rather than the touch itself...does this help?

[spinesong]

cdngrl, on Dec 1 2006, 12:48 PM, said:

okay... i m a c5 i dont really like to be hugged by to many people it may be a my mother/father didn't hug me enough syndrome but... i do beleive the body remembers touch even if the skin can't feel it. like, when someone touches the inside of my thighs even though i cannot feel the texture of thier hands or the warmth of the skin my mind responds to the touch and my body reacts to the memory of the touch rather than the touch itself...does this help?

that is facinating. thank you for sharing.
your comments spurred some more questions.
do you ever feel the need, like when you are stressed or sad, to be embraced?
do you miss or are you able to enjoy hand holding? what about reaching out to touch a baby?
i guess if you couldn't do it with your hands you could give kisses, that's always enjoyable, too.
when you are hugged, even if you can't feel it, how does it make you feel...emotionally and physically?

[cdngrl]

do you ever feel the need, like when you are stressed or sad, to be embraced?
do you miss or are you able to enjoy hand holding? what about reaching out to touch a baby?
i guess if you couldn't do it with your hands you could give kisses, that's always enjoyable, too.
when you are hugged, even if you can't feel it, how does it make you feel...emotionally and physically?
[/quote]

I'm probably the worst one to ask this, cause like i said i'm not a touchy feely person.
1. No, I never feel the need when i am sad, stressed, or whatever. I don't want to be touched.
2. Yes I miss holding hands, hugging my son, feeling the softness of my cats fur. I notice that I pet them more with my face and shoulders. (my cats not my son lol)
3. Emotionally I probably feel no differently, then before my accident. I guess it depends on whos hugging me.
Physically, even though my arms move well, I don't get the full affect of a good hug, because i am not capable of holding on.

I hope this helps.

[juls]

I feel I still get just as much affection now as I did before my accident.....just a little different!

Since we can't hold hands while walking anymore (although we do when we're mucking around) we hold hands at the table or when my bf is sitting on the couch and in bed.

Someone trying to hug you from the front while you're in a w/c is very awkward so people either hug me from behind..or the side..in bed is much easier!

All my friends rest thier hands on me or link arms when they're sitting and we normally rest our faces on each other when we've had a few

[spinesong]

brookelynn628, on Dec 1 2006, 09:35 AM, said:

I think she's asking if people are getting the amount and type of physical contact that makes us all feel cared for and comforted. I don't think it's an issue of whether or not nurses or carers are giving this affection, but if SCIs are getting the physcial contact they desire naturally from their spouses, friends, and loved ones. Also, with limited sensitivity below the injury, wherever that may be, what kinds of affection and where feels best?

I hope I clarified for you, O. Is that what you meant?

thanks girl. i didn't see your post until now!

juls, on Dec 1 2006, 08:24 PM, said:

All my friends rest thier hands on me or link arms when they're sitting and we normally rest our faces on each other when we've had a few

honestly, this is very cool information. might seem silly, like it's totally normal for you, but i find it facinating. thanks!

if you are incomplete, that means you feel touch, right?

[Simon]

FWIW I thought your question is valid. I am c4 complete, hence am unable to hug or touch my wife. Its incredibly frustrating, she 'shoulders' a lot caring for me plus the usual stresses in life and I cannot just put my arm around her if she's upset or hug her etc.
Plus this type of usual human interaction between couples provides tenderness and can then lead on to other more intimate things. She often feels she has to instigate everything (which isn't true) but I can understand where she comes from. Denise isn't the sort of person who outwardly will hug etc but I am so we can get into periods of not having comforting touches etc for months.....
So often a simple touch on the arm or shoulder by someone (even though you can't feel there) is so powerful its indescribable.
Simon
PS have been on a forum break as Denise is having her first break from me for 23 years so I thought I'd go on a forum break too!

Edited by Simon, 02 December 2006 - 04:38 PM.

[Lee]

Nope, dont get hugs off no one. Wife, me son, parents, family, i never get hugs off anyone. Yes a i agree, a hug makes a heck of a difference especially when no one gives you one and your feeling very cheesed off.

[Alin Steglinski]

i need a warm embrace from my family every now and then. to feel the warmth and pressure of their body against mine. it is so healing. <SNIP>

i am in full agreement.

[juls]

[quote name='juls' post='23659' date='Dec 1 2006, 08:24 PM']

All my friends rest thier hands on me or link arms when they're sitting and we normally rest our faces on each other when we've had a few
[/quote]

honestly, this is very cool information. might seem silly, like it's totally normal for you, but i find it facinating. thanks!

if you are incomplete, that means you feel touch, right?
[/quote]


I can feel touch spinesong..in some places it's a little different, like if you touch my foot i'll feel it but it's not like a normal touch..

It really does make so much difference having people touch you, i'm a touchy feely person so i really appreciate it....i'm not overly fond of strangers kissing me though, i save that for my friends!

I was scared after my accident that people wouldn't want to touch me as ever seems to treat you like you are fragile, thankfully my friends and bf are still just as rough when we muck around and just as affectioate before

This is a great topic spinesong


[quote name='Lee' post='23696' date='Dec 3 2006, 01:31 AM']
Nope, dont get hugs off no one. Wife, me son, parents, family, i never get hugs off anyone. Yes a i agree, a hug makes a heck of a difference especially when no one gives you one and your feeling very cheesed off.
[/quote]


That's sad Lee, that no one gives you a hug. Sometimes i ask for one when i'm in pain or down, maybe you could ask your family for one?

Here's a hug from me not the same i know...but still a hug

[Chilepepper]

Just two weeks ago, good friends of owners had lost their son who was stabbed to death, and he was only 22 years young. Anyway we went the funeral wake and there was a lineup to give their condolences and such to the parents. Well when I was next to give some kind words, I hugged his wife because we hug all the time when seeing her. So that was not a problem there. But when I came to her husband I could only shake his hand. After a few awkward seconds he leaned over and hugged me I thought for a moment that we were going to tip, but we didn’t thank god.

That evening I was saying to my wife that if I was walking I would of came up to him and hug him and shed a tear with him of the terrible tragedy and lose, and other kind words while hugging him, but this could not be done because of the chair. Jeeez I was soooo pissed off that this could not be done.....I have to admit that I will never ever get used to not being able to embrace somebody else.
It just brings more of a closenes to a person when this can be done.

Edited by Chilepepper, 03 December 2006 - 06:23 AM.

[Deej]

My husband and I hug all the time, I love it. It gives me a great feeling of closeness. Also when we are out if I get tired pushing we will hold hands so that I get a 'pull' from him and that helps - I also feel it makes us look more like a couple and I enjoy that.

Chilepepper - Sorry to hear of your friends loss.

[spinesong]

juls, on Dec 2 2006, 08:00 PM, said:

This is a great topic spinesong


[

thank you!
and the replies are more meaningful and insightful than i could have imagined.
please, people, keep sharing. even if you think something you experience isn't that novel or interesting, i promise you that someone will benefit from your sharing.

i will share my own touch "issue". i was born with scoliosis which has left me a very tender spot in the middle of my back. thankfully, i have no chronic pain but when this spot is touched firmly, or if my shoulder is knocked just the wrong way, the pain is...excruciating isn't even strong enough...it makes me nauseated with pain. not sure if contact is made with exposed spinal nerves or organs but it is something that i must always be aware of. of course, no one can tell by looking at me that i have this sensitive area and i don't want people to treat me fragile either. but who doesn't give hugs without a little pat on the back? ouch, just writing that, i can feel the nerve pain! i'm not a touchie/feelie type person but i do understand and appreciate the value of giving and recieving touch so i have a bit of a dilemma with my own physical limitations.

i want people to not be afraid to touch me because of my physical difference...birth defect is such a distasteful word to me. maybe i want people to touch me even MORE than i would if i was "normal". because it means that they aren't afraid or turned off by my body. the more i accept my body, the more others will accept it, then all the more i can accept it.

i think it's important to life as whole as possible, to have the body and mind totally integrated and self-aware. the more we are aware of our own body, mind, soul, spirit, emotions.....the more we can be aware of others.

sorry, too much psycho-babble....
i am a hospice nurse. we tend to focus alot more on the emotional and spiritual aspects of life and death. thus, my soap box.

[Survivor35]

I'm not in a relationship right now, but living with my parents, and of course my two beautiful little girls, there is always someone around to lean on if I really need it. Hugs are so important, but they always were for me prior to the accident. Much the same as saying "I love you" multiple times a day... I say it so often to my children that I think they've learned to tune me out...
I am not a quad, so hugging is different for me, I'm sure, and I have sensory down to my sternum, so hugs are great. I find myself wheeling up to my mom every now and then just to hug her and tell her Thank You for all of the things she does for me. I think thats as important as having them hug me... they have gone through so much in the past year with all of this, and have never once complained... my Mom especially, who slept in a camper in the truama center parking lot for 43 days while they stablelized (sp.) me and got me over the worst of my injuries, well enough to go to the rehabilitation center.
Hugs are a connection, they are a physical reminder that someone is there for you, just like the little things in a relationship, i.e. holding hands and kisses for no reason, are so important.

[spinesong]

Chilepepper, on Dec 2 2006, 10:02 PM, said:

That evening I was saying to my wife that if I was walking I would of came up to him and hug him and shed a tear with him of the terrible tragedy and lose, and other kind words while hugging him, but this could not be done because of the chair. Jeeez I was soooo pissed off that this could not be done.....I have to admit that I will never ever get used to not being able to embrace somebody else.
It just brings more of a closenes to a person when this can be done.

wow. that is bittersweet. the desire to share and connect with another person shows what a deep and tender man you are!
but how bitter is the taste of the inability to meet that person in their pain the way that you really wanted. that's a pretty personal experience of loss that you felt, thank you for sharing that.

i imagine that people with limitations such as yourself, must come up with creative alternatives to sharing emotions that are often spoken in an embrace.

i truely believe that if we stop trying to communicate our feelings then we will end up miserable.
maybe that's what's so important about touching each other, it is unrivaled in its ability to communicate. a shove, a slap, a pat on the back, a caress of the cheek, tenderly brushing the hair from someones face...just think how loudly and clearly these touches speak.
hmmm, i'm just thinking out loud here.
thanks for "listening".

[HollieIzzo]

I am incomplete T4 and am lucky in that hug other people but notice that there seems to be a sort of forcefield around mychair which prevents people from coming into contact with me in the way they normally would. Particularly in my teens I noticed that girls would link arms and walk along etc but when you are pushing/being pushed there is no way of doing that which can leave you feeling quite isolated.

When people do touch me for whatever reason, it always seems to surprise me, and it draws my attention to the fact that it doesn't happen too often - I am lucky enough to have a loving mum who is always on hand to hug when I need it but I do find I am not ;touched' inthe way people usually do.

My ex had a nice habit of putting his hand/finger on my shoulders while he was pushing which was nice - due to pain it is difficult to push for long so it was hard to push alongside him and hold hands

[HollieIzzo]

Sorry, hadn't actually finished typing

Anyway, I think I have missed out on certain touches due to my chair, even just being at the wrong height means a hug is difficult to initiate. I am not sure if it was due to the age that I went into my chair that I still find it awkward - I was 11 and just started secondary school and I think this is the time where you develop a lot of social interaction skills - I had other things on my mind as you can imagine, but this made it hard to start reaching out once I was more used to the situation.

However, and this is real cheesy so I apologise, I do think it makes touch special when it isn't as often as you'd like - people who make the effort do stand out to you

[Joed]

I ran across this old email I received a long time ago, and thought it would make a nice addition to this thread.

* * * * * * * * * * *

Please Touch Me~

If I am your baby, please touch me. I need your touch in ways you may never know. Don't just wash and change and feed me, but rock me close, kiss my face and stroke my body. Your soothing, gentle touch says security and love.
-
If I am your child, please touch me though I may resist, even push you away. Persist, find ways to meet my needs. Your goodnight hug helps sweeten my dreams. Your daytime touching tells me how you really feel.
-
If I am your teenager, please touch me. Don't think because I'm almost grown, I don't need to know that you still care. I need your loving arms, I need a tender voice. When the road gets rocky, then the child in me still needs.
-
If I am your friend, please touch me. Nothing lets me know you care like a warm embrace. A healing touch when I'm depressed assures me I am loved and reassures me that I am not alone. Yours may be the only comforting touch I get.
-
If I am your life's partner, please touch me. You may think that your passion is enough, but only your arms hold back my fears. I need your tender reassuring touch to remind me I am loved just because I am me.
-
If I am your grown-up child, please touch me. Though I may have a family of my own to hold, I still need Mummy's and Daddy's arms when I hurt. As a parent the view is different, I appreciate you more.
-
If I am your aging parent, please touch me the way I was touched when I was very young. Hold my hands, sit close to me, give me strength, and warm my tired body with your nearness. Although my skin is worn wrinkled, it loves to be stroked.

[spinesong]

Joed, on Dec 4 2006, 06:20 AM, said:

I ran across this old email I received a long time ago, and thought it would make a nice addition to this thread.

*

very sweet. very appropriate. thanks!

[gsp23]

I have never been a touchy-feely person. Hugs often make me uncomfortable but sometimes not, depending on the situation, person, etc. Even hugging my boyfriend sometimes can feel uncomfortable if its not the right situation.

That being said, I have some movement in my legs but no feeling... I do like when someone would just rest a hand on my in a place that I can feel. To be touched in the places I cant feel is ok sometimes too. The downside to being touched in the places I cant feel is that I dont always know that someone is touching me there and sometimes it can just remind me once again that I cant feel anything in that area. For example, I was at rehab one day and one of the other therapists were working a machine with their patient right next to me. I was turned away from them talking to mine and noticed she glanced past me, so I turned to look at what she was looking at and when I turned around I realized the OT that was next to me working with her patient had overheard something in our conversation she wanted to contribute some info on (it was something having to do with where to find an extendable mirror at a good price) anyways when I saw here standing there I saw that she had her hand on my leg to signal to me that she had something to add without comming straight out and interrupting us. We all got a good laugh when that OT was told I had no feeling in my legs and didnt know that she would have been resting here hand on my leg for a long time before I felt anything.

When I was in the hospital, it was nice when the nurses came in to talk to me to rest their hand on my shoulder. It made me feel good to have that kind of touch by them. My parents and family it was fine if they touched my shoulder, or hand, etc.

[Chilepepper]

Joed, on Dec 4 2006, 10:50 AM, said:

I ran across this old email I received a long time ago, and thought it would make a nice addition to this thread.

* * * * * * * * * * *

Please Touch Me~

If I am your baby, please touch me. I need your touch in ways you may never know. Don't just wash and change and feed me, but rock me close, kiss my face and stroke my body. Your soothing, gentle touch says security and love.
-
If I am your child, please touch me though I may resist, even push you away. Persist, find ways to meet my needs. Your goodnight hug helps sweeten my dreams. Your daytime touching tells me how you really feel.
-
If I am your teenager, please touch me. Don't think because I'm almost grown, I don't need to know that you still care. I need your loving arms, I need a tender voice. When the road gets rocky, then the child in me still needs.
-
If I am your friend, please touch me. Nothing lets me know you care like a warm embrace. A healing touch when I'm depressed assures me I am loved and reassures me that I am not alone. Yours may be the only comforting touch I get.
-
If I am your life's partner, please touch me. You may think that your passion is enough, but only your arms hold back my fears. I need your tender reassuring touch to remind me I am loved just because I am me.
-
If I am your grown-up child, please touch me. Though I may have a family of my own to hold, I still need Mummy's and Daddy's arms when I hurt. As a parent the view is different, I appreciate you more.
-
If I am your aging parent, please touch me the way I was touched when I was very young. Hold my hands, sit close to me, give me strength, and warm my tired body with your nearness. Although my skin is worn wrinkled, it loves to be stroked.

Very Nice and Very True.