Reeve Foundation Paralysis Community

Hi Dr. Gottlieb.

I want to join the others who have already welcomed you and thank you for joining this community.

I read your reply in the thread addressing depression and initially was going to post there. But since I think what I am dealing with right now goes beyond clinical depression I thought maybe a new thead might be more appropriate.

Now that I have said that, I am not sure where to start.

Some brief background: I was injured in December 2005. A very high level injury that left me ventilator dependent. I have struggled to get some semblance of a life back but ongoing medical complications and struggles with depression and anxiety have hindered much of the progress I thought I was making. I have a very supportive family who collectively are doing all they can to help me rebuild my life. Due to their efforts and support, especially that of my parents, I have been able to live in my own apartment (with 24 hour care) and do some other things. With their help and support, I recently tried to resume my education for the first time since I was injured.

Lately, however,  I have found myself in an ongoing state of crisis. I have been working with somebody on dealing with my depression, anxiety, and grief. I thought I had made progress. And I think if I look back over all that has happened in the past almost 3 years, I think I have made a great deal of progress.

But in the past few weeks I have found myself paralyzed by grief. It seems that nearly every little thing reminds me of what I lost when I was injured. I don't think this is depression because it feels different. It is difficult to explain but it is not simply a matter of wishing I could walk or ride a bike or hug my nieces and nephews again. Those are things I dearly want. But even things that are less concrete, like watching the autumn leaves fall, can cause an almost explosive grief. Unfortunately, most of it explodes inside me as I am not very good at letting things out verbally.

It is that I feel like I have lost what little glimmer of hope was keeping me going. The sense of loss (grief?) is so overwhelming that I can't even comprehend anymore how to move forward. Coupled with this is a loss of energy. There are physical reasons for this. My health has not been very good since a bout of sepsis last year. I am still working on recovering, and have up and down periods with my health. Physically that takes a lot out of me, leaving little energy for dealing with the emotional side of things. This lack of energy/loss of hope seems to have evaporated the will needed to work through this. When nearly everything makes me sad, it makes getting through the day unbearable. I find myself feeling more and more emotionally disconnected and isolated from everything and everyone around me.

On top of this I have recently began to worry that I am a burden to my family. I have funding to pay for outside caregivers 24/7 but as with many other places the city I live in has a serious shortage of qualfied nurses means that obtaining the specialized care I require is difficult. As a result, for any given week it is common that my family must scramble to ensure I have a caregiver. I realize how fortunate I am they are willing and able to do this, but it is a big stressor for us all. They have never made me feel like a burden, but as more time goes by I am increasingly feeling like one. I think the obvious first step to deal with this is to just ask them if I am a burden. But I can't bring myself to do that. I know they love me and would never tell me I was a burden. But the physical and emotional toll of caring for me is high. I can't help but fear that they are going to become as fatigued emotionally by this as I seem to be. My dependency has me worn out, if that makes any sense.

I wasn't sure if I should mention the situation with my family as I wasn't quite sure how it was connected to feelings of grief. But it is. Everything is connected. I can't seem to separate myself and my feelings from my injury. My family is obvious concerned with my recent levels of distress. But even my relationships with them is wrapped up in grief because it seems that all of our interactions are somehow tied up in the injury. 

I guess the question I had came out of your post on depression: how do you move past the grief when it seems so insurmountable?

These questions probably can't be answered but they are weighing on my mind. How does one find hope again when it feels that all hope has evaporated? How does one find their way out of the dark?

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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

Dear haiku,
thanks to you and others for your warm welcome, it is a pleasure to be here.

As I read your post, I couldn't help but thinking you have suffered so many losses in their life, but you certainly haven't lost your eloquence or the clarity of your thinking. Each one of the issues you bring up deserves a thoughtful response, so I will do my best.
I was a 33-year-old man when I had my accident and in hindsight, those first few years were kind of a blur. All I knew was that I had to do whatever I could to find some way to function as it felt like my life depended on it. Each setback (and there were many) was renewed grief, anger and despair. And to be honest, I was more afraid of quitting the fight and staying in bed than I was of trying yet again. And then after several years I finally felt my grief in full. Stephen Levine author of many books on death and dying describes grief as "the rope Burns left behind when what we have clutched so tightly is pulled from our grasp against our will." That's why it hurts so badly, that's why the anguish appears out of nowhere.

In my book "letters to Sam" (a series of letters to my autistic grandson), I described an experience I had about 15 years ago. My wife had just left the marriage, my sister was just diagnosed with a terminal illness and my children had just left for college. No surprise, but I developed a decubitus ulcer. In the midst of all my suffering, my doctor examined the wound and said "it's broken, referring to my skin. I said "I know ", referring to my heart. "Too much pressure ", he said. "I know", I said. And then when he saw that it was moist and infected, he told me it was weeping. But I already knew that. But the most important part of this story is he gave me deuoderm

To cover the wound. I protested saying that I thought wound needed oxygen to heal and why should it be covered? He said "you're wound does need oxygen to heal, but the oxygen it needs is in your blood and not in the air. Everything you're wound needs to heal is already in your body." And so to with your heart, Haiku. Your heart will heal because that's what hearts do.

I know, I know it's not that simple. Your life is complicated, your body is fragile you feel guilt about your family and you feel as though you've lost hope. Whether you know it or not, it sounds like you are managing your complicated life beautifully. Of course you need help and there are more problems than any human deserves. But you are tenacious and you are fighting for life. And as a psychologist, I have a pretty predictable take on this mind-body thing. My mother used to tell me as a child that as long as I have my health I would have my happiness. She was wrong. Today my health is pretty fragile but I have a sense of well-being and gratitude that is the underpinning of my existence. Hopefully that sense of gratitude will stay with me for the rest of my life.

It's funny you brought up your tears around seeing the leaves. I would like to suggest that your tears are about what you are seeing now rather than what you saw before. I often cry when I see the leaves or watch a magnificent sunset. I cried partly because of its beauty, and partly because I know that my life is so fragile and that this may be the last autumn I see where the last sunset or the last snowfall. I hope I see many more, but I don't know and that makes this particular autumn the most beautiful I've ever seen in my life.

Your parents. If you ask them if you are a burden, they will probably tell you half a truth. They will tell you that you are not and that they love you. I don't know if I would use the word burden, but your condition certainly a source of stress to your family and to everyone who loves you. Shortly after my accident I was having many bowel accidents which made me so filled with shame I couldn't stand it. Whenever my wife is around I would say "isn't this the most disgusting thing in the world?" And she would say "it's really not that bad". I never believed her. And then one night she finally said: "you know what, it really is disgusting. The room smells and the idea of the man I love sitting in his own *** is awful. But this is not you, it's your body. You can't help it. I don't like your bowel accidents, but I love you." I felt better. Much better because at least we could now hate this together.

Take care. Please.

Dan

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Daniel Gottlieb Ph.D.
www.DrDanGottlieb.com

Hello,

I am truly moved by your writing.  My daughter just turned 18 when she was injured in a hit and run accident. She remained in a coma for several months and gradually awoke with the struggle of being a quad and learning how to breath, eat, speak and think again. As a Mom I cannot imagine life without her. I brought her home against the advise of the medical community and told to place her in a nursing home. I could not do it. So I suctioned her trach, hung her antibiotics, turned her every 2 hours and nursed her hospital acquired pressure sores back to health. I slept on the floor by her bed and woke every 2 hours on some internal schedule. She could not even move her hands or scratch her nose. One of the first sentences she said to me was how I could let her live like this. She just wanted to die. She tried to hold her breath to stop breathing. I suffered greatly seeing her this way. My grief was so overwhelming I could not eat. I could not laugh. I could not see or hear of an accident and not fall apart. I could not watch a movie with car chase scenes... I thought I would never be normal again.... I felt bad for my daughter that she had to depend on me to empty her bowels, change a tampon.... change a diaper.... I knew that this was hard for her. I tried my best to let her know that when she was in a coma, I promised her that I would do all I could to help her.... I wished to be able to hear her voice again and to hold her hand....and feel it squeeze my hand ... Today, 3 years later, she is able to eat on her own, speak, use her hands for computer work... she is attending classes at the community college and wants to be a teacher. I love her dearly and was prepared to sleep on the floor by her bed for the rest of my life for her. I do help her with so much... and she equally helps me. She helps me laugh again, to sleep again, to watch movies again.... She tries to do everything possible... she is hopeful of the future... I still get sad, and grief stricken... I still wish for more ... but I think that is always going to be.  My husband and I are well aware that we too will get older and less able to care for ourselves. It is unwise to think that this would not happen to us. One day it is possible that we will be in a wheelchair and need diapers... need care and help in getting out... It is the cycle of life... it just happened to my daughter sooner than later....

I often feel that it must be as hard for a parent of child with a sci as it is for the injured person themself.  (And I am not limiting "child" to any specific age.)  I have 4 kids, and I am glad that I am the one that hit that tree while sledding, and not one of them. 

(Not trying to lessen the difficulties and grief you are writing about here haiku, just looking at it from a parent;s perspective.)

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T 7-8 since 2005

"It is that I feel like I have lost what little glimmer of hope was keeping me going. The sense of loss (grief?) is so overwhelming that I can't even comprehend anymore how to move forward. Coupled with this is a loss of energy. There are physical reasons for this. My health has not been very good since a bout of sepsis last year. I am still working on recovering, and have up and down periods with my health. Physically that takes a lot out of me, leaving little energy for dealing with the emotional side of things. This lack of energy/loss of hope seems to have evaporated the will needed to work through this. When nearly everything makes me sad, it makes getting through the day unbearable. I find myself feeling more and more emotionally disconnected and isolated from everything and everyone around me."

Haiku: I am 18 years post injury and I do understand how you are feeling. I can promise you that the grief does lessen and at times it even disappears. I have found many reasons to hold on to hope, one of the biggest, is the ability to help others through my own experiences. It helps me make sense of what I have gone through and if it helps someone else, then it makes the grief and loss a bit more bearable for me.

Sometimes life seems all packaged together nicely and then BAM, the grief slaps me in the face. An event might trigger the feeling of loss, I struggle a bit and then life goes on. It has been a process, one that never completely disappeared. The edges have gotten duller and less jagged over the years but painful none-the less.

Dr, G, thanks for your great reply, you certainly do "get it". I felt your words, compassion and empathy....thanks for that.

I applaud you for your candor Haiku and openess, that will help in the healing process, or so I have found.Keep posting and do take care.

Dr. Gottlieb your reply had me in tears. Not bad tears though. As PRC_Bernadette wrote "you got it." You really did. So often I don't feel that, even though I know the people in my life do try very hard to understand what I am feeling. And they probably do "get it" much more than I sometimes think. But still that sense of disconnect remains within me. As if my ability to connect to others is often as impaired on an emotional level as it is on the physical level. I don't think that is reality but that is how my world often feels. Thank you. Your reply gave me much to think about. As did the other replies in this thread.

I can't write much right now but I will come back to this thread this weekend.

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

Dan Gottlieb:

It's funny you brought up your tears around seeing the leaves. I would like to suggest that your tears are about what you are seeing now rather than what you saw before. I often cry when I see the leaves or watch a magnificent sunset. I cried partly because of its beauty, and partly because I know that my life is so fragile and that this may be the last autumn I see where the last sunset or the last snowfall. I hope I see many more, but I don't know and that makes this particular autumn the most beautiful I've ever seen in my life.

It was Thanksgiving in Canada yesterday. No big family dinner as everybody is scattered or busy with other plans this year. Instead my partner and my parents and I spent part of the day at a national park I had never been to before. Actually none of us had ever been there before, which was a little odd as it really isn't that far. I originally hadn't wanted to go. I wasn't feeling well physically and really just wanted to hide away from the world and cocoon myself in my misery.

In the end, I was rather grudgingly talked into going and it was agreed that if I wanted to leave once we got there, we would turn around and come back.

Since none of us had ever been there, I wasn't sure what to expect. Actually I had no expectations. I thought it would be deserted and barren of any plant or wildlife this time of year. And because I didn't really want to go there in the first place, I pretty much had myself in a mindset to be disappointed and miserable once we arrived.

We got there and to make a long story short, the park was heartbreakingly beautiful. It was so stunning that I almost can't write about it because I don't think words can describe what I felt. The scenery was gorgeous, the park teamed with free roaming wildlife, and there were very few other people. As I was taking it all in I thought back to what you had written here and I realized that was what I felt. At that moment I thought I was looking at the most beautiful lake, the most beautiful trees, the most beautiful animals I had ever seen. I didn't want to leave the spot I was in. Then we would move to another location to look at something else. And I would have the feeling again.

I used to be an avid hiker. This park was full of hiking trails. I was restricted to a few paved paths and wooden boardwalks. Before I was injured, had I came to this park, I know I would have gotten on the trails and rushed through them all, enjoying what I saw but hurrying because I might see something more spectacular or more interesting further down the trail. Or on the next trail. I would have snapped some pictures but never really taken the time to see things. And although I admit that I felt quite sad wondering what my wheelchair kept me from seeing, I realized that I probably wouldn't had the intensity of experience and feeling had I been free to go where I wanted, rather than relatively anchored to a few places. Would I rather have been free like the others to go where I wished? No question. But for what it was worth, I think going to the park was a very therapeutic thing. At the risk of sounding melo-dramatic, I think it might have even been a cathartic experience on some level. Overall it was definitely a bittersweet experience but one I am glad I had at this particular point in time.

The other aspect, that of possibly seeing such things for the last time did weigh on me. Recently I have been very contemplative of this. But I think until I read your take on my tears about the leaves falling Dr. Gottlieb, I think that was something I was afraid to consciously admit. Or maybe I didn't quite understand the conflicting emotions of being awed by beauty and crushed by grief all at the same time. I think I have finally come to a place where I have stopped denying and trying to fight the physical reality of my health. I think I was afraid of that because it meant acknowledging limits and denial seems so much easier and less painful. But it makes sense to me that is something that is necessary to move forward. I have a long ways to go with that, I don't know that I am anywhere near where I need to be with acceptance and moving on. But it does feel like I am a bit closer than I was.

I'm sorry I didn't intend to ramble on for so long. Thanks again for your insight Dr. Gottlieb and thanks to the others who posted as well. This has been a very helpful thread for me.

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

You are moved by my writing, and I am moved by your story. This whole thread -- this grief business -- is ultimately about love. If we never loved, we would never mourn. And the deeper love, the deeper the despair. Sadly, sometimes the despair and grief blinds us from the love. I hated losing my ability to dance because I loved dancing, I just didn't know how much. Same with feeling my daughter's sit on my lap when they were younger, I didn't know how much I loved it when it was happening. Well, now I know. I know how deeply I love who I love. I know how deeply I love nature and life and how much I appreciate all of my equipment when it works. My deepest wish is to be conscious of how much I love what I love every day. That way, when I experienced loss -- as I surely will, I will feel pure pain without regret.

I am deeply touched by how much you love your daughter. If everyone loved someone that much and if everyone was loved that much, there might be peace on earth!

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Daniel Gottlieb Ph.D.
www.DrDanGottlieb.com

I also wanted to respond to haiku..

I am so happy you had the opportunity to enjoy what was around you. Your story reminded me of something that happened to me about 20 years ago and I wrote about it in one of my books:
at the time we were living in a rental property with a large front yard surrounded by trees. One spring day I was on the front yard by myself and my caster wheel got stuck in a gopher hole. The more I try to go forward or back, the deeper mind we'll got stuck. I tried to holler for help, but it was about 50 yards from the house and the windows were closed. I also try to turn around to see if someone was nearby industry, but my back was to the street and I had very poor neck rotation. So I hollered until I became lightheaded from hypotension. When I got my breath back again, I hollered again this time crying with frustration. And because of my frustration, I thrust my arms on the sides of my wheelchair until they bled. Finally, exhausted and hopeless, I just began to sob and feel my helplessness. In a few minutes, I realized I was surrounded by the sounds of birds it was a gorgeous spring day. Finally, I was able to rest where I was when I stopped trying to fight against the truth of my life. What beauty I discovered when I stopped fighting.

And thank you so much for your travelogue. It felt almost as though I was at the park with you.
Dan

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Daniel Gottlieb Ph.D.
www.DrDanGottlieb.com