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Thread: Can friendships remain the same with SCI?

  1. #1
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    Can friendships remain the same with SCI?

    Hi all. I very recently joined the caregiving forum and have found it to be extremely supportive. I thought I would post a topic that is on my mind a lot these days. It has to do with friendships. My husband is completely paralyzed from about the lower ribs down. It has been about four years now. For some reason, I think I was numb for the past four years and am now really experiencing the full ramifications his injury. For one thing, our friendships seem to have been affected. You have friends that mean well, but don't really know what to say, so they say nothing. That doesn't sit well with me. Nor does the person who feels fully comfortable with inquiring about my sex life, my husband's bladder function, etc. I mean it is somewhat better than being afraid to ask me if I am okay, but interrogating me is a bit much too. I tend to not adequately voice to people what I do not want to discuss and what offends me. I am pleasant for the most part even though in my mind I am thinking, "Can you please get just one clue?" I find it hard to spend time with even my dearest friend, because I feel like s*** for the jealous and resentful thoughts that I have about her. What I miss is having a strong connection with another woman that can really empathize with me. That is what brought me to these forums. Reading the insightful comments from all of you in such a short time has given me more support than friends that I have had for 10+ years. I would like to find a support group where spouses meet to share experiences, but I haven't heard of any such groups in my area. Maybe I am not looking in the right places??? My husband's friendships have suffered too, I think. Some of the guys that he has know since he was in high school very rarely call now. That really offends me, but I know they have their own lives too. Any advice from those of you who have figured all of this out (ha, ha) would be greatly appreciated.

  2. #2
    "Some of the guys that he has know since he was in high school very rarely call now".

    It's natural for so called friendships to drift apart as people move forward with their lives after high school. True friends stay in contact & stick with you even when times get tough. Sometimes we are disappointed to discover that people in our lives who we though were true friends, turn out to be casual acquaintances at best. I believe this is part of the sadness of a serious injury or illness. There is also a flip side to this. Your husband needs to make an effort to keep the friendships alive. Speaking for myself only. I had individuals whom I considered true friends that I didn't hear from until many years after my injury. It turns out that they didn't know what to say to me(regarding my injury) or how to put it into words. School doesn't teach us this. It is only learned from experience.

  3. #3
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    Dear Chasb -

    Thanks for the reply. I think you are right. I really should encourage my husband on that front. I guess I just feel that the "friends" should take the first step, but as you implied, they may not know how to.

  4. #4
    Senior Member TD's Avatar
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    What to say/when to say it/who to talk to

    Let me begin by saying you are not alone in these questions and reactions. Everyone here has had to face this and each one of us has approached the problem differently.

    Since your posting covers such a wide variety of subjects I will try and give you my perspective on them and perhaps give you a starting point from which you can respond to your friends.

    Originally posted by momoftwo:

    For one thing, our friendships seem to have been affected. You have friends that mean well, but don't really know what to say, so they say nothing. That doesn't sit well with me.
    Most of the friends we had pre-SCI are just as shocked about your predicament as you are but do not know how to express their feelings to you. Saying nothing is a natural way of avoiding the subject. My wife was hurt by the plain and frank statement by my best friend and his wife when they stated flatly that if my injury had happened to either of them they would hope the other would just let him/her go. I, on the other hand, understand. What hurt me was their drifting off and never calling or even emailing us to see how we are doing but I will not chase after them and am making new friends now.

    Originally posted by momoftwo:
    Nor does the person who feels fully comfortable with inquiring about my sex life, my husband's bladder function, etc. I mean it is somewhat better than being afraid to ask me if I am okay, but interrogating me is a bit much too. I tend to not adequately voice to people what I do not want to discuss and what offends me. I am pleasant for the most part even though in my mind I am thinking, "Can you please get just one clue?"
    How close are you to the person who inquires about your sex life? Would you answer their question if your husband were AB? Having someone you can discuss this subject with is very important but I would ask that you consider carefully whom you choose. Whether it be morbid curiosity or genuine concern, having a friend like this could be a great asset.


    Originally posted by momoftwo:
    I find it hard to spend time with even my dearest friend, because I feel like s*** for the jealous and resentful thoughts that I have about her.
    Your jealousy and resentment are a natural response and part of the grieving process (Yes, you have something to grieve over) and I would suggest you seek professional help in how to get through these feelings.

    Originally posted by momoftwo:
    What I miss is having a strong connection with another woman that can really empathize with me. That is what brought me to these forums. Reading the insightful comments from all of you in such a short time has given me more support than friends that I have had for 10+ years.
    Okay, I am a man and I am the one needing the care, not a caregiver. However, you will find lots of women on this website in you position who would be more than willing to talk about their own experiences. I am sure you will find you are not alone.

    Originally posted by momoftwo:
    I would like to find a support group where spouses meet to share experiences, but I haven't heard of any such groups in my area. Maybe I am not looking in the right places???
    Finding a support group where you fit in should not be too difficult. I would suggest you start with the social worker at the rehab facility where your husband was treated or ask your husband's rehab doctor if he knows of one. I believe there is a national caregivers association that may know where you can find a group locally. Try doing an internet search using "Caregivers Association" as your keyword.

    Originally posted by momoftwo:
    My husband's friendships have suffered too, I think. Some of the guys that he has know since he was in high school very rarely call now. That really offends me, but I know they have their own lives too.
    I have experienced this as well. I know it's a guy thing and his buddies just don't know how to handle his situation or how he is handling his situation. Has he gotten past the anger yet? Does he get out to his old hang outs? It is up to him to renew his friendships and those of his buddies who cannot deal with his disability will quickly fade from the scene. Those who are his true friends will stick around and your husband will be that much richer in knowing just who his real friends are and who never really were friends in the first place. I know this sounds cold but when it comes to your husband and his friends...STAY OUT OF IT!! You are going to have enough on your plate just sorting out your friends and your own feelings about your new life. Be supportive of his decisions but, please, express your opinion only when asked.

    "And so it begins."

  5. #5
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    Ouch!!!

    Dear TD,

    Thank you so much for taking the time to give such a well-thought response. I say "ouch" because some of what you said was a little hard to hear. However, I think you are on the money with everything you said, and I needed to hear it. Most of all, you reaffirmed what I already know and haven't yet faced. I need to seek counselling to help me work through the feelings of grief, anger, jealously, etc. Hearing it from a "stranger" just makes it more clear.

    Thanks again for your support.

  6. #6

    Our friendships are different

    I have found that when Steve's accident happened, some friends just didn't know what to say. Others were so freaked out by it that we have not heard from them at all. But some close friends have stayed close.

    Recently Steve invited an old friend of his for dinner and he accepted for the next weekend. Steve spent all week in preparation and talked about nothing else but "Carlos" and how he looked forward to this visit.He also helped me shop for this special dinner etc.

    Well, when I noticed that Carlos was an hour late and Steve was pacing the house in his wheelchair I snuck into the back room to call the guy. He answered on the first ring, started explaining that he was just tired and would rather visit another time. I know this was wrong, but I said "Look, he has talked about seeing you all week. There is everything but a 'Welcome Carlos' sign hanging out front. You could have called him if you didn't plan on coming.I think you should call him now and give him the same lame excuse you just gave me so he will at least think you bothered to call." Anyway, Carlos came to visit with him for a few hours that evening. Even though it wasn't the right thing to do, I liked seeing Steve smile and talk about how much he enjoyed seeing his friend again.On the other hand, someday if I get the chance I will still beat the crap out of Carlos.

    Other friends were put off by my not being available to go to dinner etc. Including the main hospital and then to TIRR he was in a hospital setting for almost 11 months. Friends could not understand that I would rather be with him instead of going to some stupid dinner.

    I know some of them wanted me to get away for my own good, saying things like "You need to get away from the hospital" and "Steve would have wanted you to". (Unlike a lot of you, Steve sustained a brain injury as well as a spinal injury. He had a trach for almost 7 months, and his cognitive function at the time made it to where he need constant supervision) Steve's Mom would stay at the hospital during the day, and I would stay with him from 3 pm - 7am when I had to go to work.

    Wow, I just realized how good our life is now compared to a few years ago.

    Russ Byrd

  7. #7
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    resentful, jealous,angry....me too

    I figured out last week that if I didn't get counselling fast I'd plain go nuts. So I called and have an appt. in Oct.I have good days and bad days. Today was a bad day. Every little thing is a BIG DEAL!!! I look around and see everything I have to do and get completely overwhelmed. I resent my sister because she's a princess.(she gets her coffee in bed every morning and every afternoon after her nap!!! She doesn't know how to use the dishwasher because she never does the dishes..... I envy my neighbor across the street because her husband puts the coffee on every morning. My neighbor next door has a husband who cooks and cleans....My husband is handicapped..... As a amatter of fact I just now took a break from writing this because he had an "accident"while trying to make it to the bathroom.This is the third time this week that I've been messing with this s***!I don't want to have sex because I have to do all the WORK!!!!! Get it??? I'm cashed! I'm sad! I'm angry! I'm resentful!I want the time together that I was cheated out of! He had his golf for 30 some odd years While our time together was put on the back burner!! I do understand how you feel momoftwo...I do. We have people who avoid us now. They act like they my husband is contagious.We're going on a cruise in Nov. And all I can think of is how hard it's going to be. A walker, a scooter, a bedcane,a CPap, etc etc. I want to go back a few years and take the cruise with my "whole' husband. But it's not going to happen and I know I must get counselling ASAP. The thing is, I know I'm going through the normal process of grief and anger but I don't know how to turn it off. It's consuming my life rigt now..... So momoftwo I feel for you and know that what you're feeling is expected but if it consumes your life, do yourself a favor and get counselling. I'll keep you posted on my progress and will watch the forum to see how you're doing...... Fran

  8. #8
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    I just joined here and I have been reading what All you have said on this topic about losing friends and about being angry, tired etc. being a caregiver. I am not disabled, but I was dating a man who recently became a quad incomplete. I wasfalling in love with this man, and now he is laying in a hospital bed. To make matters worse (if it can get worse) we had an argument 2 weeks before the accident and that was our last conversation. I have done research, called the hospital, talk to his parents/friends, send cards and letters and visited. He gets angry when I visit, so I have backed off. People have asked me why I do this. They can't understand why I would keep visiting him, when one, we had that argument and he is mad at me and doesn't want me there, and then two, because of his disability. So, I have lost 2 friends over this topic (obviously not really good friends--one said he was better off dead..Don't want to repeat what I said) Other people have asked me would I want to continue having a relationship with this man. I thought about it. I know that it will be alot of work. I know it will not be easy. But, yes I would. Why, because I fell in love with him, and there is not a day goes by, that I don't miss talking with him. Am I crazy? Some people might think so. But, I don't care what people think. Unfortunately, SCI not only affects the person it has happened to, but it has a ripple affect on the people who are closest. I already see David's friends dwindling off. Thank God he has one great friend who is there four nights a week. But some people deal with it better than others. In my opinion, it is their loss, not David's. They are missing out on being there and getting to know a wonderful person.

  9. #9
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    Thank you!!!!!!!!!!

    I want to say thank you to Russ, Fran and Debra S. for your comments. It is so comforting to know that I am not alone. Fran, I think you are correct about counselling. Please do keep me posted. I haven't taken the step to make an appt. yet as you have, but I want to. I'm just a bit scared. I feel in some ways that rehashing everything will be very hard, but I know that I need it. Russ, I think you are a good guy for putting it straight to Carlos. He needed to hear it! Debra, what some people do not understand is that an injury does not make a person change on the inside. The bond you had with your boyfriend is still there, SCI or not. The "better off dead" comment was infuriating to me! There is such ignorance about this out there. Yes, life will never be the way it was, but your boyfriend can still have love, joy, happiness, excitement, peace, etc. He just may have to work harder to get there. I would like to join Russ in giving a nice whoopin' to Carlos and the person who told Debra her boyfriend would be better off dead!!! Well... I guess that attitude doesn't combat the ignorance out there. So, I'll just let it remain a fantasy.

  10. #10
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    PS momoftwo

    I think every major city has SCI organizations with support groups. Go on the internet and check it out, also the social workers from the local hospital should beable to help you find one.... Today is a better day for me. Instead of looking at the big picture of things to do I'm going to tackle one of the projects and get it done... By the way at 5 AM my husband woke up and had a BM crisis, he tried to call for me but I was sound asleep. Guess what, he managed just fine and took care of things.I've been doing too much for him so I'm partly to blame... Gotta go get my "man chores done" Have a good day!!

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