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I am taking an informal survey that I may or may not use at some future date.
With what you are going through, what kind of conversation would you love to have with a grandfatherly type person?
What questions would you like to ask you and what advice would you seek?
Thanks so much
I just had a consultation with a man in his mid-40s who had been a C5 quadriplegic for 15 years. He said the reason he wanted to see me was because he felt like he hasn't done enough with his life and that he has allowed his disability to define him. Furthermore, he said he felt lost.
Always a fan of simple questions, I asked him what stopped him ...
I read your posting twice and have been sitting here for the last 10 minutes trying to think of something to say and might be helpful. Other than looking for employment, I'm not sure what kind of advice you are looking for.
So if you could post again and give me some guidance about the guidance you are looking for, perhaps I could be
Ivonne, your signature line is the classic one from Forrest Gump about life being like a box of chocolates.
Like most living mammals, I love chocolates. But I remember the time I was a child and bit into one at my grandmother's house and it was filled with bugs! That little trauma didn't turn me off to chocolate, but I do have more respect for the
Rachel Naomi Ramen M.D. once said in a poem ''fear is the friction in transitions.''
I have always found that line helpful as whenever I look at people who were struggling with changes in their lives, I can see they are experiencing friction in transitions.
You know who you are and what you had, in this moment, you know what you ...
Love your questions Ivonne! And, of course, each of us must answer them for ourselves, but I'm happy to share some of my reflections on these issues.
Who will I become? I took a philosophy course in college and we were talking about identity. My professor gave us the assignment to answer the question ''who am I.?'' Being a poor student and being ...
My wise old grandfather would have said: ''oy veh, stop searching already come and have dinner!'' At the time I just thought he was a little obsessed with food like the rest of my family. But now that I think about that phrase 50 years later, there is great wisdom.
I'm not sure I know the difference between searching and striving, but I know that ...
hi Dave, welcome to the forum. I think we could all benefit from hearing one another's experience. Ultimately, that's what this forum is about. And 30 years experience sure gives you lots of experience to share. I know that because I am 30 years post accident! Just keep reading the posts and weigh-in whenever you want to share.
Well, last Thursday was my 64th birthday and I spent it at a Carole King/James Taylor concert. Great fun and great music and I went with great friends. 64 years old and I have lived nearly half my life with quadriplegia. I can't count the number of bowel and bladder accidents I've lived with or the number of skin breakdowns. Certainly if I had $10 ...
Well, you sure have had some wonderful responses to your question about acceptance. It means something different to everyone and it happens at different times and in different ways. But more often than not, it happens.
And I am also intrigued by your original language ''when does it set in?''
I think that's exactly what happens, it seeps ...
Pain and hope. Believe it or not, you can do both at the same time. You can have hope that one day you will be able to live with pain and still experience joy in your life.
I have a story for you Ivonne (but what's new?)
This story takes place in ancient times and there are three stonecutters sitting next to one another cunning stunts in order to ...
sounds like this is all pretty new for you and your boyfriend. Please remember there are two people here who has been traumatized and are frightened and confused about their needs and their future. Just because he is in a wheelchair, that doesn't mean his emotional injury is different or even more important than yours.
My radio show was
if you ever want to know more about want it's like to live with quadriplegia, feel free to ask whatever questions you like and I am happy to answer as I am sure many others will.
Your curiosity is a gift. Thank you
Sam recently had an insight that could benefit all of us. Along with his mother, he was at a friends house for a large dinner gathering of about 20 people. He was the only child there. At the end of the evening he told his mother that he felt ''really nervous and embarrassed'' being there. Not only was he the only child, but because of being on ...
Last week on my way to the shore for the weekend I had an accident but didn't know it. So when I got to bed that evening, my groin was excoriated. I was nervous about what this all meant and why my system was not regulated. I didn't say ''why me'' I just felt sad and anxious fully conscious of my vulnerability.
Woke up the following morning to see ...
Most recent book ''wisdom of Sam'' I advised Sam's parents to raise their child they have rather than to ''help'' this child become who they think he should be. That's probably good advice for all parents. But I take it a step further.
A couple of years ago I was with a man who has struggled with depression and despair much of his life. He refused ...
You've gotten some great advice about going out and finding pleasure. Please do something every day that brings you joy, even if it's just taking a walk or a bath or sharing a laugh with a good friend. These things are not distractions from pain, bringing pleasure into your life is actually part of the healing process.
You see, the longer you go ...
I would like to mention that my radio show on Monday, June 7at noon, is with Gail Sheehy. Years ago she wrote a best-selling book called ''passages''. And now she has told her personal story in a book called: ''passages in caregiving''
I encourage all of you to listen to the show on whyy FM on Monday at noon. Or you could listen to it any time on ...
This might sound like name dropping (well, it is) I was at a party last night in Washington DC at the home of Ben Bradlee (that's Ben Bradlee) and his wife Sally Quinn (of Newsweek). There was about 80 people there -- political people, bankers, entrepreneurs and philanthropists. And little Danny Gottlieb! Don't ask how I got the invitation, but ...
you have asked all of the right questions -- what does this mean? What now? How do I live with today and how do I plan for tomorrow? All the right questions, but they can only be answered in hindsight. One day, after the shock and grief have diminished a bit, you will look in the rearview mirror of your life and see how you have been living
You have been given some sage advice by Trish, and now you have your own sense of morality and ethics to struggle with. Not to mention the longings of your heart. So here is my advice:
do nothing. And do that for a while. Make a commitment not to decide anything right now.
Just like he has been traumatized, so have you. So let yourself ...
I often feel the same way about my grandson who was diagnosed on the autism spectrum when he was 18 months old. And now that he is 10, he is beginning to realize his social deficits and feels great anxiety and confusion about them. My heart breaks for him and I wish for him the same thing I wished for my daughters -- nothing but happiness.
I completely agree with Trish. Your life is difficult as is your husband's. Take whatever opportunity you can to experience joy.
I remember in the early years after my accident and I was so totally dependent on my wife. I needed her badly and I hated that she was suffering and sacrificing her life.
When she had an opportunity to go away ...
I'm not so sure words are the vehicle of communication with your grandson, I think it's love. And the kind of love you too feel for each other is beyond words. It's your feeling of closeness to him, it's his half cocked grin on his face. You already have wonderful communication and the words are secondary.
I know, I know you want something ...
So the big question that keeps coming up on this thread is: ''how do we cope with ongoing distress and suffering?'' And it doesn't matter whether the distress is losing an identity, losing freedom, losing love or losing function, because all of our suffering involves loss. We've all lost something precious, we all fear a dark and relentless ...
My late wife had MS along with many of my friends and one of my current patients. I've always thought to myself that I was more fortunate than they because from the moment of my accident I knew exactly what I had to live with and that biologically/neurologically, my future was pretty predictable. I tried to imagine living with the disease to hold ...
Hi Brandon, thank you so much for joining us. And just look at the outpouring of care and compassion your letter has triggered!
This business of loneliness may have been with you to a certain extent since your mother died. Of course it was made worse 5 1/2 years ago and what the hospital did while you were in ICU may have made matters even ...
welcome to this forum, I am so glad you have found us. I trust you have explored available resources to have caregivers at home? If not, there are great resources at this website and you can feel free to e-mail me.
I understand that you are concerned about your anger, I am too. But keep in mind that anger is a judicial emotion; a reaction to
Denise, your grandson does need to talk. And talking to people who understand would be enormously helpful for him. But even if not spinal cord injured, counseling could help when he is ready. Please tell me if there's anything I can do.
you have talked a great deal about your son, your anguish for him and what you feel he needs. I told you in a previous post were wonderful mother you are and how fortunate he is to have you.
and you have heard from us that loved ones suffer at least as much as those with injuries -- sometimes more. So now it's time for me to ask about you. ...