hello everyone,

Just wanted you to know that for next month's audio chat we will be continuing the discussion of intimacy in relationships but we will expand it to all of our intimate relationships including our parents, our children and ourselves.

Please weigh in with ideas, thoughts, questions or concerns and we will be sure to try to address them all on November 7 at 4 PM Eastern time.

Sign up for the November 7th show now: https://cc.readytalk.com/r/50rcroqxcxhg

Watch the last show: http://bcove.me/h623souw

hello my friends,
would love to hear from you before the webcast in a couple of weeks. What are the issues that you struggle with in intimate relationships. What makes you feel the most angry/misunderstood or lonely. What happens in relationships that makes you feel safe or loved or loving?
what are your ideas about what you can do differently to increase feeling loved and decrease those conflicts you run into?

Thanks everybody!

Just some thoughts from my perspective.

Background:  Been married almost 20 years.  For the last 10+, I’m a wife, caregiver to my husband C3 complete quad who also suffered a TBI in the accident that paralyzed him.  I’m also mother to our 2 sons who are now in high school.

Our husband/wife intimacy is over.  For a variety of reasons, that aspect of our marriage is gone.  I’m not interested in recovering it.  I live with this new normal which isn’t so new anymore since we have been married longer with paralysis than without. 

Besides the obvious, I find mostly I miss being touched.  No hugs, no caresses, no holding hands. All those little touches and jesters a wife craves in her marriage.  I miss those tremendously.  It’s not always just about sex or the lack thereof.

Does my husband miss it or think about it? I’m sure.  I caught him reading 50 Shades of Gray off my Kindle account, so I assume he must.  We both miss what we had together.  However, that part is over by mutual agreement basically.

The other more incredibly sad part for me is seeing how the relationship he had with his sons has vanished.  They were in 1st and 2nd grade when he was paralyzed.  They are now about to graduate from high school.  Although he has lived at home this entire time amongst the family, he has a very superficial relationship with them.  He’s missed a lot, and so have they.

Early on, I tried to push the relationship with them.  I tried games, school events, and various activities they could all be interested in.  I made us all sit around the table and eat together.  I tried movie nights, parties, asked him to get involved, asked the kids to involve him.  I tried anything and everything I could think of.

But apparently it seemed like I was the only one that wanted to foster this relationship.  So after several years of trying, I stopped.  Instead, I spend my energy fostering my relationship with my sons. 

They have little interaction with their dad now.  Since middle school, they stopped having friends over.  They talk to him as little as possible.  We do have a significant amount of weekly nursing help these days.  The boys and I tend to spend much time upstairs in order to avoid the nurses and all that goes on with the care of a C3 quad.  We feel crowded out of our privacy, and it is distracting having our family invaded by his caregivers.

Right or wrong, my husband’s focus is primarily on himself.  His needs are so great that he really can’t see the needs of others.  It’s almost like he is the center of his own world to the exclusion of seeing anyone else in the word.  I actually attribute his attitude more to his TBI than paralysis.  But the whole thing is a package deal which changed us all.

I mostly hate seeing how his paralysis has destroyed two father/son relationships.  I feel hurt that due to these circumstances my sons have grown up in a family dynamic I never wished they would have to experience.  They are wonderful, bright young men.  I couldn’t be prouder of them and what they have accomplished.  They both have bright futures.  I just wish their dad had been part of it all.

hi Trish,

I am always very moved by your brutally honest open description of your pain. It always breaks my heart and opens it at the same time. And that's what happens when we share our pain with one another-when we share it with a clear eye and an open heart and without shame or blame.
when that happens, it opens hearts.

You've heard all of the platitudes about all of the ways we can have intimate relationships with our spouse. But nothing happens without a desire to be closer. And no one should ever judge you (especially you) for saying that you don't want to be closer.
I just hope and pray you have an intimate relationship with yourself-one in which you don't judge yourself but feel more kind or even sad about the relationship you have.

I appreciate your courage and your honesty, I always did. And reading this, I'll bet there are hundreds of people that would love to hug you right now, and I am one of them.

And yes, we will bring some of these issues up on November 7

please take care

I can definitely understand your pain, Trish.  I rarely write on this website because I don't want to hear platitudes and you "should" do this or "should" not do this.

My husband had a C4-5 injury 2 years ago.  I was at the hospital and later at the nursing home as much as I possibly could.  I dealt with the doctors, nurses, caregivers - advocating for the best care possible.

He returned home after 4 months.  6 months later home he fell in love with one of his caregivers and proposed to her.  He didn't tell me.  He just kept getting meaner and meaner towards me.  Finally, I taped them together.

He told me that he didn't love me anymore but I should keep paying for his care because I had more money than he does.

I started divorce proceedings.  He relented and fired her.  He cried for her.  Later I found out that she was pregnant by her live-in boyfriend.  I guess the love affair with my husband was just one-sided.

The real joke is that I still love him and we are in counseling together.

I am giving him some time because maybe he will come out of this self-centerness.  In your case, it looks like your husband never did.  I don't know maybe I'm wasting my time.  We don't have children together so that is good.  His parents never came to visit him since his accident.  His daughter came 3 times.  I am his only family where we are located.

As I write these words I think I must be crazy to stay married to him.  But, I keep hoping that tomorrow will be a better day.

I hope your life gets better, Trish.  Life is too short to live with all that pain.

The highlight of last week's Dr. Dan on ... monthly webcast series was when he lead a woman through such a wonderfully healing exercise right before our ears that left everyone speechless. 

This was Dr. Dan's second webcast in the series (Wednesday November 7th at 4pm). You can watch and listen here: ChristopherReeve.org/webcasts.

It was beyond words for me. If you don't know, we have set these webcasts up to be a discussion, not a lecture. Dr. Dan is more discussion leader then professor. This episode focused on relationships -- some with lovers and others with family and friends.

For any of you who heard my webcast last week, you heard a very emotional and intimate exchange with "Lori", who was in hospice and hungered for human contact-a caring touch. But as we spoke, none was available. Family and friends didn't visit very much and she didn't feel truly cared for by any of the staff at the hospice.

As you can imagine, my heart broke and I felt helpless for this sweet woman and her simple human needs. And I guided her through a process in which she touched her own face with loving hands, something she felt deeply. And when we said goodbye to each other, she sounded more calm and peaceful. So I turned back to my listeners to share my internal experience and that's when the phone went dead!

So I have unresolved comments! Here is what I said (to myself):

I said I wasn't able to return to business as usual on the webcast right away because I was feeling too deeply and did not want to shut my feelings down. That I was feeling great tenderness and love. I was also feeling great sadness-almost grief for this woman who I cared so deeply about although briefly knowing I would never hear from her again.

And I said that this is the nature of any loving intimate relationship. That it takes courage to love something that can be touched by death. Whether literal death or emotional death, we cannot love openly without being willing to risk hurt.

While I was saying this (granted to myself), I saw my phone line ringing over and over thinking "boy, that person sure must want to get a hold of me." Turns out it was Rob Gerth trying to tell me that I was disconnected and that I had been talking to myself for the last 10 min.!

for our next webcast on January 9 I am thinking of having a discussion about:

what does change really mean and what do we want to change?

In the new year, people resolve to lose weight, clean their closets or exercise more. And we know these resolutions rarely work.

I would like to talk about what change really means and how we can make it happen. And perhaps the greatest change we can make is to change our attitude about ourselves and our lives.

So please give this some thought and maybe post some of your answers here so we can have a really interesting and helpful discussion next month!

Take care!

dear dan, i m sarmi from kolkata, india. missed this episode. was at my hospital quarters. was too busy with int.disability day celebratn & uday shankar dance festivl presentatn(my combi wheelchair dance was a star attractn). now gettng ready for upcomin 100th indian science congress. my talk is scheduled on 6th jan'13. i shl b talkng on 'spinal cord injury: scenario in india....n, in west'.

dan dear, "........miles to go before i sleep....n, miles to go before i sleep....."

hope to talk to u in nxt webcst.....

best wishes for Merry Christmas.............n, a Happy New Yr.....mch in advnce.............to u n d whole of our community!!!!

L-o-L
 

in india, i face d most 'attitudinal barrier' of society towards 'disability in general n sci'....so i m trying my best on breaking this hindrance....n, encouraging community participation. so more of awareness camps, hip-hop street shows, spicy talk shows on thought provoking themes (inclusion, empathy, mainstreaming). hope, a day will come when my spinal cord injured brothers n sisters from remote suburbs n rural areas too will lead a respectful quality life. ......then, can i die in peace. 

I would also like to add in to our January 9 discussion some follow-up to the massacre in Connecticut – speaking of change.

This came up in my radio show this past Monday, December 17 when people were talking about what needs to be done. When one woman talked about how communities need to come together, I said: "great idea. So what's your plan?"

And that is the kind of change that's most meaningful. What can we do as individuals to help make the world a better place? Whether it's for those with disabilities or vulnerable children or the environment or what ever. What can we as individuals do to contribute?

What kind of change would you be willing to make for the welfare of others?

dan dear, you are talking of Connecticut massacre.....i would like to talk on Delhi gangrape case, likewise.

question today globally, i feel, is where are these gone: conscience, truth, trust, love, peace, harmony, moral values.

healing of mind & heart has become essential. endagered is homo sapiens species & humanity. urgent steps are to be taken at international level.....or soon we human beings would become extinct on this earth!

hope to have a valuable/interesting webcast on 9th jan on 'sci & intimacy'.

warm rgrds.

A happy new year wish to whole of our community......LoL

:sarmi (sarmistha sinha from kolkata/ India)

Join us Wednesday (Jan. 9, 2013) at 4 PM ET for a Dr. Dan webcast: What does change really mean and what do we want to change? You can call in and discuss this topic with Dr. Dan Gottlieb, our online community's resident psychologist.

Sign up now!

Rob

An interesting study was published recently in the journal "Science" that is relevant to everyone but especially to us.

It was about identity. When they asked people to look back over the last 10 years of their lives, they can easily see how much they've changed. But when they were asked to look ahead 10 years they don't see themselves as changing much.

So on our Web chat on January 6, we will be talking about:

"Our identity: who we were, who we are and who we will be"

much has changed in our lives before and after disability, before and after becoming a spouse or child of someone who is disabled.
So what was our identity before all this happened and how has it changed? We can see dramatic changes when we look back, but can we also see changes when we look ahead or do we think we will be pretty much as we are today?

And of course anyone who has listened to our Web chat already knows that these discussions can go anywhere and everywhere!
So please join us

I thought for next week's webcast we would talk about:

"Living the Life We Have"

So many of us feel grief or anger about losing the life we had moral others tell themselves they cannot be happy until they live the lives they want or the lives they feel they should or could have.
What happens when we decide to live the life we have? Is it giving up hope or is it about something else?

Those are my thoughts going into the web chat but anyone who has ever joined us knows that these chats go wherever our group wants it to go!

By the way, if you have time next Wednesday at 4 PM Eastern time, please join us. These discussions are always rich, informative and enlightening for all of us.

next week we will again try to do "living the life we have" as opposed to presenting what we've lost or wishing for something that may or may not happen.

I've had some interesting responses to this idea, so please join me next week, love to hear your thoughts

Dan

unfortunately we had to cancel this months webcast because we didn't have enough participants. I still think the question of "how do we live the lives we have" is a critical one. So many of us wait for the lives we feel we could have or live with regret or resentment about the lives we once had.
Is it even possible to live this life in this body with all these adversities and still live our lives with grace and gratitude? What do you think?

Dr. Dan, I'm here

hi Lori, nice to see you. So, how would you answer the question? Do you feel you are living the life you have? If so, are you grateful for your life or are you angry for what you've lost?

AT this point in my life, I feel numb inside. Ost of the time I'm just smiling or complaining to get thru

I would say a bit jealous of others, sad

could you ever envision a time in the future when you could be comfortable with your life, maybe even happy? Just wondering if you could imagine that possibility.

let me press a little bit harder (it's as if your pain wasn't annoying enough, now I have to be annoying on top of it!).
I want you to consider the question differently – given the life you have and the body you have, could you ever imagine living a life of comfort and maybe even happiness? Tell me if you can create that vision or do you think there is no way you could ever be happy?

I don't see happy. I can't vision that for myself . I keep seeking out how o=
ther people have found happiness . A common theme is to look to God. I sti=
ll struggle with things I didn't do as able bodied, so they stick. With me n=
ow and now impossible. Ok not impossible, but hard, such a s going to. Visi=
t my brother in WA.

Always give the most love u can:)