Managing your guilt about everything and anything

Dan_GottliebDan_Gottlieb Posts: 13Moderator Moderator
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When I was first injured nearly 40 years ago, I felt guilty about the burden I was placing on my loved ones. And I felt guilty that I couldn't parent as well, as I did. And I felt guilty that I could not be an equal partner with my wife. I could go on and on.

And oh yes, my wife and parents felt guilty. And my boss felt guilty because he gave me the day off that I had my accident.

It's quite strange, these minds of ours. It's not as though we are suffering enough, but we have to beat ourselves up on top of it! I'll tell you, I've been a psychologist for nearly 50 years and in my humble opinion, having a mind is sometimes no bargain!!

It's an odd thing, but intimate partners who have been abused often feel guilty and blame themselves! The same thing with a child of divorce. No matter how young they are, they feel either  they are responsible, or could have done something to prevent the divorce.

This is painful as all of this guilt is, what often lies beneath it could be more painful.
The sense of helplessness and powerlessness. So we tell ourselves we could have or would have or should have done something to avoid this catastrophe.

Talk about fake news! Sorry, my friends, but we have precious little control over most of our lives. I tell my patients sometimes that if I could control my bladder, I would be a happy boy!

Ultimately, what we are looking for is peace. Of course, we want to improve our function so that we can have a more functional life. And I am delighted that there is so much exciting research out there.
But in the long run, I think we all want peace and well-being in our lives. In my professional and personal experience, peace happens when we let go. Even when we let go of a big inhalation our body and our minds are more relaxed.

The whole idea of letting go can be especially difficult for those of us who have lost so much control of our bodies and our lives. It took me a long time to do that, but when I did I realized I had been fighting with the life I had for years. That battle is always doomed to fail. But when I gave up that battle and decided to live the life I have instead, I was able to set goals for myself and devote my energy to achieving those goals rather than fighting with the facts of my life.


I wish you and your loved ones. Peace.
Dan

Daniel Gottlieb PhD
WWW.DrDanGottlieb.com

Comments

  • iamdadmaniamdadman Posts: 137Moderator Moderator
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    Very wise words Dr. Dan.  I agree with all that you said.  I experienced the guilt you describe.  It's taken me a while but I too, have learned to let go.  What has helped me is to change my way of thinking.  When I was first injured I measured my life in terms of what I had lost.  Now, I am able to measure my life in terms of what I still have and am able to enjoy.  I truly believe and can see so many things to be grateful for.  It takes commitment, patience, being flexible and accepting help on so many different levels.  

    thank you for your comments... and much peace and love

    Joe
  • BrookeUBrookeU Posts: 130Moderator Moderator
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    Thank you for this post. My older brother sustained a C6-7 complete SCI at a young age, and I often feel guilty about being able to walk and do other things he can't. I think he also feels guilty, as if he's some kind of burden for needing help. I just want him to know the only thing burdening me is him *thinking* that he is. Guilt is a strange thing, so here's to hoping for peace!
  • WAGSofSCIWAGSofSCI Posts: 134Moderator Moderator
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    Great thread and such an important topic, one that I think is felt by both partners. As wives and girlfriends managing guilt is huge. The first time you spend a weekend away from your partner, or go out for a girls night and wondering about how your partner is going to manage being alone, how they're going to empty their leg bag or get something to eat, or what if the remote falls off the recliner or bed? Thoughts of "have I been gone too long?" cross our minds. But, even though it is challenging, I can speak from personal experience, living a life as independently as possible has been a huge benefit to us (Elena and Dan). The first few times, I felt guilty that I could do or reach things that he was not able to. The more often I left him alone, I would come home to finding him discovering how to navigate around the house without me. One time he learned how to transfer himself in and out of bed without me! I Couldn't believe it...he has made major improvements in the past 3 years and to be honest, most were without me being present. Not to say that this is for everyone and I am simply speaking for our situation but the guilt began to wear off because I knew that he would be just fine whether I was home or not. It took a lot of practice to get to this place on both our parts but now he has returned back to University and he goes to classes without me everyday. It's the little steps that have driven him to return back to living a life that he wants to. So, I guess what I am saying is that guilt can be tricky, but there is no point on beating yourself down just try to practice sitting with it and moving away from it slowly, after all practice makes perfect. 
    Your WAGS of SCI
    (Elena and Brooke)
  • ZcollieZcollie Posts: 112Moderator Moderator
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    I really struggled with the feelings of guilt when my SCI first happened. Knowing that for the most part I would need help doing certain things for the rest of my life sucked. My parents, but mostly my mom was my primary caregiver after my accident. She stopped her life to help take care of me. I am so grateful for everything she did and has done for me, but I know if my injury never happened her life would be different. In a way I feel like I held her back... Even now living with my girlfriend. She does a lot of my care and goes to school, but I know if she did not do my care she would be doing a lot more for herself. It fucking sucks. I wish I could do more for myself so others didn't have to halt their lives for me. On the other hand, I am paralyzed and do NEED help from others for certain things. It is not like I am choosing this or being lazy. It is hard looking back on all the little things I took for granted before my SCI happened. Not fun have to always rely on another person. I just want to do everything myself. I handle my feelings of guilt a lot better now than I did in the beginning of my accident. However, the feelings are still there. 
    Accept what is, let go of what was, and have faith in what will be. -SONIA RICOTTI
  • youngatheartyoungatheart Posts: 6Member
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    @Zcollie some of the things you mentioned stuck out for me. As a mother of a 24 year old son, I dont think moms stop their life for their children, their children are their lives, at any age. Its instinct that something automatic kicks in and it's a given to be there for their children no matter what and with no timeline, your always a mother. And we dont go through life " doing things for ourselves". As you get older you're with your partner and loved ones and you do things together. You do things with your family and your never doing things alone. I see what your saying, about independance,  it I think as people we are meant to be there for one another.
  • Mnichols23Mnichols23 Posts: 33Moderator Moderator
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    @Zcollie everything you said is warranted.  I’m 23 years old and very  often  feel guilty about the burden I place on my parents.  They have repeatedly told me I’m surely  not but those feelings of guilt will always be there.  I’ve learned that we could help them it ways not many think, by offering a different perspective on things. Often times I’ve learned that all they look for is thanks and gratitude 
  • Dan_GottliebDan_Gottlieb Posts: 13Moderator Moderator
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    I am so happy this forum enables a discussion like this.

    Sheldon Kopp, a  highly respected psychiatrist in the 1950s said:
    "The most difficult part of love is tolerating your own helplessness in the face of a loved ones suffering."

    We can all relate to that no matter which side of the wheelchair we find ourselves on. So in order to cope, we develop solutions of grandeur thinking we can do something we cannot do. Worse, thinking we should do something we cannot do.

    When I was first injured my wife and I saw a therapist. She said she refused to go into a restaurant we used to enjoy, because it was not accessible. Hearing this, he simply said, "one quadriplegic in the family is enough. Go to the restaurant and enjoy yourself." That was liberating for my wife and insightful for me.

    I knew if she didn't get time on her own, she would have broken down and left the marriage. So we agreed that she would go out for the day. I was terrified, but I knew this was necessary. Fast-forward a few years and I loved when she went out as it was one of the few times I had my privacy.

    And to those who have parents or siblings as caregivers, their hearts are broken and may very well remain so for the rest of their lives. Same as you. Quadriplegia doesn't affect one person, it affects the family and a community. And none of this is our fault. It's just heartbreaking.

    And now nearly 40 years later, I watch the love of my life wash the dishes. And for all of these years, I have watched people I love wash dishes while I feel either frustrated, guilty or ashamed.,

    But now, my predominant feeling is the ache for something I cannot have.
    Dan

    Daniel Gottlieb PhD
    WWW.DrDanGottlieb.com
  • ZcollieZcollie Posts: 112Moderator Moderator
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    @youngatheart Thank you so much for those words. I appreciate the honestly and genuineness. Mothers are truly amazing. My mom has done so much for me and never made me feel like I stopped her life. Our lives just changed haha. We have grown so much closer and I am extremely grateful for that.

    @Mnichols23 Yeah you are totally right. Good point of view. Thanks
    Accept what is, let go of what was, and have faith in what will be. -SONIA RICOTTI
  • CruckerCrucker Posts: 50Moderator Moderator
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    edited March 6
    My own two cents: this guilt business, like the recurrent sadness, never quite goes away. I wrote a blog recently about a dream I had, twenty two years after my injury, in which my wife seemed to be saying goodbye and moving on to a new life. I woke up feeling profoundly guilty of how much her life has been compromised by my condition, for decades. Consciously, we have both become so habituated to dealing with it as a constant in our mutual life that it's sometimes hard to remember a time it wasn't so. That one passing episode of guilt actually served a useful purpose: it reminded me -- yet again -- never to take her efforts, or anyone else's, for granted. And then to get back to living my life with her where paralysis takes its rightful position on the periphery.
  • Monica.TMonica.T Posts: 96Member ✭✭
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    I bare the burden of guilt over my son being in a wheelchair. My son Charlie already required a walker (he has CP), when he was 16 [in 2017] his Ortho said he needed surgery to correct the curve of his spine (Scoliosis), said it was beginning to effect his lungs, though at that time Charlie had never had any lung issues. I was very hesitant about the surgery, but the doctors said it was just me being afraid of the surgery (full spine) and that as Charlie grew the curve would only get worse. Everything in me said not to do it, but I okayed the surgery - and there was a major complication; a bleed at the T2 level that left my son paralyzed. My mother (Charlie's grandmother) blames the doctors that did the surgery, but I blame myself, the risk were explained to me before the surgery, my gut told me not to have the surgery done, but I did any way. The hardest is when Charlie watches videos of successful scoliosis surgerys on youtube and sees other teens get up and walk out of the hospital - then asks me why he can't walk anymore. So I live with guilt everyday and will for the rest of my life.
  • iamdadmaniamdadman Posts: 137Moderator Moderator
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    @Monica.T
    My dearest Monica,
    After reading your post, I just have to comment.  I can very much relate.  I was injured in large part due to my diabetes.  I am a type 1 diabetic and had a severe low blood sugar episode when awakening one morning.  My wife, who is a retired nurse, was in bed with me and immediately recognized the signs of my low blood sugar.  She went downstairs and got chocolate for me.  Now, I must add that I was acting very strangely (according to my wife because I can't remember anything until a week after my surgery).  She said I was talking like a little child and even ran outside in my underwear and got in my truck.  She came outside, took the keys from me and told me to get back in the house.  I did go back into the house but I hid from her.  She heard a noise and thought I had fallen down the stairs but I had actually fallen over the banister from the 3rd floor to the 2nd onto a hardwood floor.  Now for the guilt, upstairs where everything started, was a bottle of glucose tablets that we kept specifically for when I had hypoglycemia and for whatever reason (probably because I was acting so strangely) she didn't get them and instead went to get the chocolate.  This is significant because chocolate has a lot of fat in it which means it dissolves slowly and therefore didn't raise my blood sugar when the glucose tablets would have.  My wife carried the guilt of that around until very recently and my accident was almost 8.5 years ago.  She held herself responsible for my injury.  As much as I would tell her to let it go and that we don't know if I would allowed her to give me the glucose tablets, she carried that around with her.  I would have to hold her when she would cry from her guilt and tell her I loved her.  She finally saw a therapist for her guilt and the therapist used DBT (dialectical behavioral therapy).  You may want to Google this and see if there is anyone in your area who offers it.  I am not offering medical advice here but I mention DBT for informational use only.  Monica, do your best to let go of your guilt.  It does no one any good and only interferes with your serenity and sanity.  The truth is no one really knows what the future holds.  In my wife's case, even if she had given me the glucose tablets, that is no guarantee that I wouldn't have fallen.  I may have refused to take them or taken them and due to how strangely I was behaving, still fallen over the banister.  In your case, you made the decision based on what you thought was best for Charlie based on what the doctors said.  What if you prevented the surgery and in the future, Charlie developed complications that affected his breathing or paralyzed him?  Then your guilt would be that you didn't allow him to get the surgery.  Your post indicates your are a caring and loving mother and that you only have Charlie's best interest at heart.  What happened in the surgery was out of your control and therefore not your fault at all.  Charlie will be alright as long as you continue to love and nurture him.  You are a good person Monica.  Your guilt is hurting you and you don't deserve that.   

  • BrookeUBrookeU Posts: 130Moderator Moderator
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    I am so happy this forum enables a discussion like this.

    Sheldon Kopp, a  highly respected psychiatrist in the 1950s said:
    "The most difficult part of love is tolerating your own helplessness in the face of a loved ones suffering."

    We can all relate to that no matter which side of the wheelchair we find ourselves on. So in order to cope, we develop solutions of grandeur thinking we can do something we cannot do. Worse, thinking we should do something we cannot do.

    When I was first injured my wife and I saw a therapist. She said she refused to go into a restaurant we used to enjoy, because it was not accessible. Hearing this, he simply said, "one quadriplegic in the family is enough. Go to the restaurant and enjoy yourself." That was liberating for my wife and insightful for me.

    I knew if she didn't get time on her own, she would have broken down and left the marriage. So we agreed that she would go out for the day. I was terrified, but I knew this was necessary. Fast-forward a few years and I loved when she went out as it was one of the few times I had my privacy.

    And to those who have parents or siblings as caregivers, their hearts are broken and may very well remain so for the rest of their lives. Same as you. Quadriplegia doesn't affect one person, it affects the family and a community. And none of this is our fault. It's just heartbreaking.

    And now nearly 40 years later, I watch the love of my life wash the dishes. And for all of these years, I have watched people I love wash dishes while I feel either frustrated, guilty or ashamed.,

    But now, my predominant feeling is the ache for something I cannot have.
    Dan

    Daniel Gottlieb PhD
    WWW.DrDanGottlieb.com
    "And to those who have parents or siblings as caregivers, their hearts are broken and may very well remain so for the rest of their lives. Same as you. Quadriplegia doesn't affect one person, it affects the family and a community. And none of this is our fault. It's just heartbreaking."

    I know my brother feels like a burden or guilty that he depends on us (the family) for certain things, no matter how hard we try to make him not feel that way. I often feel guilty for being able to do things he cannot, or at least not as easily. He has never said anything to make me feel guilty, it's just something I naturally feel. Guilt really is something. But this is why I look forward to our adventures together—it addresses both our guilt...for me, it's the fact that we are experiencing the same cool thing that we both can do together, and for him, it's the offsetting of the effort it does take from me for the purposes of having a good time.

    We're headed to Washington DC tomorrow, which is pretty accessible, so guilt shouldn't be getting in our way this week!
  • Dan_GottliebDan_Gottlieb Posts: 13Moderator Moderator
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    This guilt thing is really a mess, isn't it? I wouldn't be surprised if you feel guilty because he feels guilty! Sometimes having a mind is no bargain!

    Shortly after my accident, all I wanted to do was die. One night in ICU, a nurse came up to me as she wanted to talk. We spoke for about 20 minutes and she thanked me for listening. She saved my life. When she asked something of me, I knew that my life could still have value.

    I don't know what level of paralysis your brother has, but I am sure there are things he could do to either help you or someone else. I think that's the only way we can find out who we are and how to live with what we have.

    Hope you enjoyed Washington?

    Please take care
    Dan

    Daniel Gottlieb PhD
    WWW.DrDanGottlieb.com
  • iamdadmaniamdadman Posts: 137Moderator Moderator
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    @Dan_Gottlieb
    Dr. Dan,

    I too have found great relief in being of service of others.  It gets me out of my own head, which like a bad neighborhood, is not a safe place to go alone.  

    Being of service for me, gives me purpose and satisfaction.  It also gives me pleasure.  
  • Mnichols23Mnichols23 Posts: 33Moderator Moderator
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    @iamdadman what level of paralysis are you? Also what are some things you find that helps you help others? 
  • iamdadmaniamdadman Posts: 137Moderator Moderator
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    @Mnichols23
    I am a T2 incomplete.  For me personally,  I have always been someone who loves helping others.  It just gives me a good feeling.  This was true long before I was injured.  I think what motivates me to help others is being a sensitive and empathetic person.  I know first hand the trauma of having a spinal cord injury, especially those first few months and if I can help someone walk through that, I get great satisfaction from it.  I have found that it is very hard for me to feel sorry for myself when I am actively helping others.  I serve on boards that help people with SCI as well as the disabled community as a whole.  I am on the boards of the Seattle Alliance for People with DisAbilities, The Here and Now Project, a Peer Mentor with the Reeve Foundation as well as a Regional Champion with the Reeve Foundation.  I get much enjoyment from these activities and that enjoyment makes my life more meaningful and enjoyable.  I hope I have answered your question.  If not, please let me know.

    Joe 
  • Monica.TMonica.T Posts: 96Member ✭✭
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    iamdadman, Thank you so much for your kind words. A dear friend of mine keeps telling me that even though Charlie wasn't having lung or heart issues from his scoliosis, that with rapidly progressing scoliosis and Charlie still growing, that more than likely in time, without surgery problems with breathing and heart function would have developed (just like his ortho doc had said). She says there is no reason for me to feel guilty. We also talked about how this is like going through the same emotions as the grieving process and as time passes these feelings of guilt will subside. It just really tears me apart inside knowing I told Charlie everything would be alright - but it wasn't.
  • iamdadmaniamdadman Posts: 137Moderator Moderator
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    @Monica.T
    Monica,
    I also think it is natural, especially as a mother, to take on the guilt when something or anything happens especially to our children.  We are supposed to be their protectors and shield them from anything this world can throw at them.  Find someone you love and trust and share your feelings of quilt with them.  Cry, rage, feel sad to work through what you feel.  I believe you are absolutely right with viewing this as something similar to a death.  There are so many kinds of loss and paralysis is just one of them.  As my mom would always say, this too shall pass.

    Joe
  • Monica.TMonica.T Posts: 96Member ✭✭
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    iamdadman Thanks Joe, I have my good days and bad days, my mind tells me no one is to blame but my heart breaks with the knowledge that I agreed to the surgery even though every ounce of my being said not to. Guess I still got a long way to go with that. Working through guilt is part of working through grief , a part of us never truly stops grieving though, we just learn to live with it.

    But working through, actually moving back&forth through the stages of grief is helping - some.

  • iamdadmaniamdadman Posts: 137Moderator Moderator
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    @Monica.T
    No, the guilt and grief are processes that take time, energy and patience.  I was so mad at myself because I felt that I hadn't taken my diabetes seriously enough.  I thought I was invincible.  For me it all comes down to the fact that ruminating about it is my way of thinking I could have prevented it...but you cannot prevent anything after it already happened.  I know it does me absolutely no good but I still indulge myself occasionally.  I will see something while out or on TV and it will kick in a memory of when I was able bodied and I will get sad or angry.  Call myself stupid and really beat myself up.  It's a waste of time but I still do it from time to time..
  • Monica.TMonica.T Posts: 96Member ✭✭
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    iamdadman I think when it comes right down to it - grief is a life long process, it stays with us, but as time passes we learn to live with it, doesn't mean we always have it under control, some days it will sneak up on us and those days can be really hard.
  • BrookeUBrookeU Posts: 130Moderator Moderator
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    @iamdadman, I just saw your comment back. Love the "sometimes having a mind is no bargain!" My brother's level is C6-7 complete. He doubts himself even though he has more knowledge and talent than most people can ever wish to have. I lean on him for so many thing, and I want him to know he has value. If I need cooking advice, I call him. If I can't remember some random fact or the forget the name of something I want to now, I call him. I lean on him so much. We had a mostly good time in Washington! We enjoyed all the free museums and Ethiopian food! If you want to know more about our trip, I made a couple of posts about it that you can find on my profile :)
  • iamdadmaniamdadman Posts: 137Moderator Moderator
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    @BrookeU
    I thought I had responded to your post but couldn't see anything so if this is a repeat, please forgive me.  I think you have a very special relationship with your brother.  One that means a lot to him even if he cannot feel the trust, love and your reliance on him at the present moment.  When I experience my SCI, I thought that my life was over.  I defined myself by what I was able to physically do and since, especially in the beginning, I couldn't do anything, even lift my head off the pillow, I was worthless.  As I am sure you have heard we are human beings, not human doings.  Might I ask as to how long your brother has been injured?  If his injury was fairly recent, he is still in an adjustment phase which for me, was quite dark.  Just by the way you talk about your brother, I feel extremely confident that he feels your love.  It is something that even though it may not look like it, keeps him moving forward... even if it is very, very slow forward movement.  I know for myself, the love of my wife, three kids, brothers and sisters meant a great deal to me even though there was no apparent evidence of it.  I was feeling sorry for myself and extremely depressed.  One day when I yelled at my wife and she went downstairs to go for a walk, I freaked out because I felt totally alone.  I couldn't see how much her presence alone meant to me.  I apologized to her as soon as she came back and told her how much I appreciated everything she did for me and that she would always tell me she didn't give a darn that I was paralyzed because I could have died that day and didn't.  Drop me a line anytime.  I am glad you had a good time in Washington.  I was born and raised in New York, moved to New Mexico, was transferred to southern California by my job and retired to Washington state before being injured.  I love it here.  The geography, the people, the food it's all excellent.

    Joe  
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