Dear Norma,our stories are almost identical. My children were small when I had my accident 30 years ago. And I recall figuring out with my girls how to get in there elementary school for the first conference. And now my grandson is trying to figure out how I can get on the beach with him!My daughters are in their mid-30s and both have scars from what they have lived with. But they have lived with more than just quadriplegia and divorce, their mother had malignant melanoma when they were infants and she became severely depressed thereafter, and lots of other stuff. So they have their scars and they are both a little weird in their own ways, but they are beautiful women in every sense. In their own way, they're both devoted to making the world a better place. Their level of compassion and sensitivity is extraordinary and I am so deeply honored to be their father.Norma, there is a new concept called: "posttraumatic growth". And what we are learning from this emerging research is that although your story and mine are wonderful and life affirming, they are not unique. How many parents of children born with disabilities have said that although they and their children struggle with the difficult issues, what has happened to them has made them better, more loving and compassionate people.
Some think we should all keep in mind. Posttraumatic growth.
Nice meeting you Norma!
To follow up on my own post, I'd like to have a discussion about this concept of posttraumatic growth. This is not the opposite of posttraumatic stress and most of us have experienced both. So for all of our sakes, I invite you to take a clear minded view of the trauma you have left with and described the impact it's had on your life -- the good news and the bad news.
Should open up an interesting discussion about what's happened to us and what it means
The way I can relate to this concept of post traumatic growth is through my first marriage. I married when I was 25. A year after our marriage, my husband was diagnosed with colon cancer. After several surgeries and 2 different rounds of chemotherapy, he died 9 months after his diagnosis. I sat in a hospital room for 48 straight hours and watched my husband die. It wasn’t a peaceful experience because my gut told me we were both way too young to experience this.
The only way I can put it is that I feel enhanced from the experience although I can’t say I am grateful that my husband died. Of course not immediately, but over the months and years, I think his death allowed me to have greater compassion for others, certainly people with illnesses. It also gave me an intense appreciation of marriage. I realize that marriage is so precious and can easily be lost. I think I also experienced a certain amount of emotional maturity I don’t think I would have gained any other way at such a young age. My husband’s funeral was only the second funeral I had ever attended. Being a widow while in my twenties had a way of shifting my priorities and values. The little things most 20 somethings complain about didn’t matter at all to me.
Today I feel blessed for what I learned from this experience with my first husband. I think that experience has given me some of what I need today to survive my current husband’s SCI. And maybe right now that is what I am wondering…will I find growth in this experience too?
In the beginning of SCI, as a spouse you are just in survival mode. There are so many things that have to be done and you just do them. In the beginning you think things might change, you are hopeful that a cure is just around the corner but reality slowly sinks in that this is as good as it gets. After several years, the question comes, can I and am I willing to do this for the rest of my life and what growth is required for this new kind of marriage?
I think I come off here as a sniveling, hand-wringing, neurotic, caregiver wife. But really I think I am just searching for a positive change that can come from these struggles. This searching causes a lot of questions that I tend to post here. I guess I have gone with the true intent of the forum On Healing. If there was a forum On love, On joy, or On laughter I would have a lot to post there too. That is the good news.
The bad news is that both of these experiences have taught me that life is very fragile. It doesn’t happen to someone else…it happens to me. That thought has made me more cautious, a little over protective, and yes perhaps slightly neurotic. With good there is always the bad. Sometimes I just don’t know how much more growth I can stand.
What incredible thoughtful and deeply moving posts. I feel honored to be part of this process and closer to those who have opened their hearts and taught us all more about what it means to be human.My story:when I was in seventh grade I learned about psychology and knew that's what I had to do. I prayed and said I would do whatever it took to be a really good psychotherapist. By seventh grade teacher who I idolized believed in me and introduced me to psychology. Three months later, he molested me. Lesson 1 -- child abuseLearning disabilities, mild depression and other stuff lead to school failure. Flunked out of college my freshman year. Lesson two -- learning disabilities and low self-esteem.
Get married to a wonderful woman and have a baby two years later, another baby the next year and the next year she gets diagnosed with a life-threatening melanoma and a year of chemotherapy. Lesson 3 -- being a caretaker
three years later she develops multiple sclerosis. Not sure what that lesson was!Six months after that I become a quadriplegic. Several lessons about helplessness and vulnerability and letting go facing death and facing life and facing self-loathing.10 years later My wife leaves me. Lessons on divorce
same time my daughters go to college. One falls apart and begins to self-destruct. Lessons on help and helplessness with children (everyone is okay now)wife dies -- and you know that lesson.Multiple illness facing death -- the big lesson.That lesson gets reinforced now that I "celebrate" 30 years of quadriplegia as my body starts to show symptoms that no one can explain. The big lesson.So my wish came true. All of these lessons turned me into a pretty good psychotherapist. A happy one anyway.I've learned about love and how accessible it really is. And the more I love, the more easily I love. Some people (many people) love me back, but that really doesn't matter either way I'm filled with love.And gratitude for all of the emotional and spiritual wealth I've enjoyed.I'll conclude with the dream I had several months ago.I was on a subway with several people and there was the angel of death. Same picture we all have -- malnourished Darth Vader with a sickle. All the other people were scared. I wasn't. At the next stop, they all ran off the subway. I didn't. He looked at me and pointed a finger and said: "January". And then I woke up.I wonder if he was right. And I wonder if maybe it's this January. And if so, this summer might be my last. And because of that it hass been the best summer I've ever had. And this posting feels open and rich and intimate. And this morning's bowl of cereal was especially good because I love summer fruit and I knew that would be ending soon one way or the other.
.Today, I'm not afraid of dying. I am afraid of not living. And all of those lessons have taught me, if nothing else, love better and live consciously.Take care
Dear Randi's friend,
so like you, I would love to find a person to love romantically. And like you, I would like to find sex and caring and all that stuff. And as long as we are one thing, I would also like to be able to make love like I did before the accident!All worry is about the future. So you have painted a picture of special people loving relationships and making love and now you fear that you will not have that picture. A friend of mine had a traumatic childhood. And like you, she also had a picture of what she thought she needed. And she went through her life comparing her relationships, her children, her in-laws and everything to the picture she had in her head. When I look at her life objectively, it looks pretty good to me. Lots of people have loved her, she's had a good career and has wonderful children. But she is so disappointed in her life because nothing ever fit that picture. The problem wasn't her life, it was the picture.I live with longing also. We all do. It's not a call to action and it's not a need we cannot live without, it's simply a longing for something we don't have at this moment. But there is another moment coming right around the corner and it could be Heaven, could be hell or, most likely, something in the middle.I wish your dreams would come true and I wish you were no longer afraid of you nightmare. And most of all, I wish you happiness.
I recently saw a 49-year-old man for consultation who had cerebral palsy. He was overweight and walked into my office with the classic unsteady walk of someone with CP. So when he sat down on the sofa, he breathed a sigh of exhaustion telling me how hard he worked to get to that spot. Before we got started, I simply made that observation and invited him to just rest for a couple of minutes. And when he did, he began to cry.
He said he never talked about his disability does anyone. Although, from my perspective, he seemed minimally impaired other than his gate, it was still obvious he had a disability. When I asked him simply why he didn't talk about it, he hesitated for a second as though he didn't know. And then he started telling me his story: "my whole childhood my parents told me I was just like the other kids. I wasn't, but that's what they told me. They lied and I was their lie." Once he started telling me his story, he stopped crying and he seemed lost in the storytelling -- a story he must have told a thousands of times before.
So I asked him again why he didn't talk about it, I again there was that silence before he answered. And then he said angrily "because nobody would understand." He went on to talk some more about his isolation and anger. He told me he could cut someone down with a sentence or "a look". He said that sometimes he was afraid of all of the anger in there.
I commented that both things he just said were about fear. He was afraid no one would understand and he was afraid of his own anger. He paused for a minute and I said: "I think you are right. Nobody would understand. Nobody can understand." First he cried and then he sobbed because he had just been told that the nightmare he has been carrying his whole life was real. But something happened after that, he looked much more relaxed and engaged with me. And suddenly he was able to talk about what it was like to be him.
He told me that all of the anger protected him from such great fear and sadness. And ultimately, there was a great longing to be understood, something he never received from his parents. But in order to protect himself from further injury, he developed a cutting tongue and the ability to isolate himself.
Ultimately, now that he can give up the battle of wishing for a type of understanding he could never have, he no longer had to pretend he was someone he wasn't.
Who else can relate to that struggle?
Dear ratherbflyin,first of all I must say it is a little weird. I just spoke to you on another thread a few minutes ago. It's almost as though we are taking our conversation from the dining room to the kitchen. Thank goodness neither one of us has to negotiate who will clean the dishes.Seriously though, I think you have nailed the great dilemma of being human. We are social animals. We are hardwired to belong to a clan and in order to belong, there is a pool for sameness. If we are the same, the animal part of our brain knows that we will be protected by the clan and vice versa. Just like our four-legged ancestors.
But unlike our four-legged ancestors, we are blessed and cursed with an ego. And because of that ego, we need to be unique and have our own identity. And in today's world, the needs of the ego are even more powerful. Not only do we need to be unique, we need to be better! That's what makes disability so frustrating and painful. My daughters dog has three legs, but he doesn't seem to mind. Everyone that sees him feel such great sadness and compassion (ego), but he just wants to play (no ego).
So here we are visibly impaired sitting in a world wheelchairs with our ventilators or spasms or whatever we have. Nobody knows about the catheters or the dysreflexia or pressure sores or... and even if they know the facts, they could never know the experience. And part of the reason for that is because we could never adequately give voice to the experience.The ego is hurting because we no longer feel one of the clan and lord knows our older standards, we are certainly not better than anyone.I firmly believe that if our egos were more quiet, we might just want to go out and play.And if what I said is of value to you, then you are in charge of the dishes!Dan