Reeve Foundation Paralysis Community

I am trying so hard to understand why? What does this mean? What now? How do I make this work? I am trying very hard to accept this new life.  SCI has changed verything...my dreams, hope and vision for the future. I 'm a loving wife and care giver. I am a mother and a daughter; I am a child of this universe! Where do I go from here?

 

After surgery due to a benign tumor inside the spine, my husband of 25 years is a T4 complete paraplegic, I am trying so hard to take care of his personal needs.. not much time if any, for me... Is it possible to hope for a long life? Will we be able to be grandparents and grow old together?...please can someone who has been in this condition for a longer time than us, tell me is this dream still possible?

 

It has been 18 months for us and I want to believe.......... I suppose living for today is a good thing, which we do!! but, what about tomorrow? Is there a tomorrow?   

 

Hope, I can hear from many of you. I have much to give..there is goodness and kindness in me! Right now..I also need, helping souls!! Hope you find your way to me..

 

Ivonne

       

      

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"Life is a box of chocolates"

Ivonne,
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 with this and what it has meant to you.

But for now, you must manage what needs to be managed and you simply have to feel what you can tolerate feeling. In Alcoholics Anonymous they say "one day at a time", but in crisis, sometimes it is one hour at a time. So if you can visualize getting through just this next hour, and then repeat it for the next one, you might be better off.

I have said often on these pages that the great pain of trauma -- the greatest pain, is the alienation that comes in the wake of it. Whether you are in a wheelchair or caring for one, all of a sudden we feel alone in this world like no one can understand us.

There is something about our spirit that drives us towards life, in the same way that plants and trees are drawn to the sun, we are drawn towards wholeness. I know that doesn't make any sense to you right now let's look at what you've done so far. You have reached out to a community who you know understands. You have to open your heart to us and talked of your pain. You have had the courage and clarity to ask for our help and you will get it.

You will get lots of advice (and some may be helpful!). But most of all, you will get compassion and understanding. You will find kindred spirits who has been where you are. You will find some who still suffer many years later and others who have found a way back to their lives despite the adversity. You will hear many of our stories.

And for now, I'd like to hear a little more about yours. How old are you and your husband? Are you able to talk together, grief together, plan together? And most important, who were you before all this happened?

And as far as a long life is concerned, I am a C5-6 quadriplegic and my accident was 30 years ago. I am now 64 years old -- old enough to repeat stories over and over again!

Just one question you asked that can only cause pain. If you want to ask "why" after a tragedy, then you should also ask "why me" when you realize that you are loved, you love, you have resources that many don't have. So if you want to say "why do I deserve this suffering?" You must also say "what have I done to deserve these gifts."

I am so glad you have joined this community and hope you receive everything you need from us

Dan

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Dan Gottlieb Ph.D.
www.DrDanGottlieb.com
"wisdom of Sam: observations on life from an uncommon child"
trailer:http://www.youtube.com/watch?v=_V4QrekU1Wk

 

Dear Dr Dan,

 

I am so happy to hear from you, I have being keeping up to date with your postings. You are truly, a light in the night for me.

 

My husband Thierry and I are 51 years old, we love each other, always have, we have being blessed with a great marriage, we talk, and plan and hope for the future, always did .  Needless is to say that we have good days and some not so ... We have a 23 years daughter, who just graduated from the university recently. We have hopes and dreams and we want to grow old together. Oh, what a wonderful thing this would be!! We want to be grandparents; we want life, love, and hope and have fun together. We want a tomorrow.

 

About pain...Well, I will speak for me, as a care giver 24/7...it is so very difficult, physically, emotionally and spiritually.  For me, the emotional and spiritual part has being the hardest... But, will keep believing God loves me and this enormous challenge have been giving to me because, He knows I can endure it. Sometimes, I can't help thinking, He forgot about me. 

 

I often ask God why?

 

When, I think about our lives, I must say my world started and will end with this man, I so love. I have a choice to make and my choice is to live, hope and cherish every moment we have together. 

 

I work from home now at days, take care of my small business knowing it is up to me to keep the financial part going to meet our bills.   I take care of my Thierry's physical needs and take pride in keeping him healthy. I take care of everything.   I worry about getting sick or worse, who will take care of him? Those are my thoughts, my concerns.  But, I try to stay away from thinking too much. I try to live today and cherish it, as if there is no tomorrow. Like Thierry always says, today is a present...enjoy it! 

 

But, I want tomorrow. I want us...

 

Dr Dan, you are an incredible man. You must have a great spirit!  How wise you are! Thank God for you. I can't be part of your Tuesdays' discussions, I am working then but, I hope you feel compel to continue talking to me. I sure need an understanding heart.

 

Thank you for replying, I was ready to stop posting. I am so glad I did not give up.

 

Regards, Ivonne

_____________________________

 

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"Life is a box of chocolates"

Next week will mark the my 5 year anniversary of my accident. I broke my neck in a diving accident, which subsequently left me paralyzed from my chest down (C5 complete). I still ask the question "Why?" every single day. It isn't a question we will ever get an answer to (at least not here on Earth; I'm keeping my fingers crossed on there being a Heaven). I think it's only natural to want reasons for something that is as devastating as paralysis. I often feel like, if I knew there was truly a purpose behind all of my suffering, I'd be able to cope better. Part of what makes life with paralysis so difficult, is the injustice of it all and the not knowing: Not knowing how long you'll be this way; not knowing if a cure will be found; no justification as to why. I know how creul it can seem. I cringe when I watch tv and see people purposely doing all kinds of extreme sports or activities and can't help but feel frustrated or angry, when I see someone do something completely reckless (like attempting a bicycle stunt off of a roof or getting thrown of a bull and stomped on) and they get up and walk away, as if it's no big deal. It seems do unfair that criminals do all sorts of horrific things and yet are blessed with healthy bodies.
My perspective is the care receiver, while you're a care giver, but I can empathize with you. I see the pain and frustration of my loved ones and I know how hard it is to try to maintain "normal" relationships. Unfortunately, I have no answers as to why. I do know that a lot is possible, if you're willing to try. A lot of course, rests on your husband's outlook and how he copes with the loss and changes in his life. From the reverse perspective, I can imagine that if he can develop a positive attitude and chooses to keep moving forward, then that should give you all the more reason to do the same. You can give one another strength.
I've written a lot about my thoughts & feelings on living with paralysis. I've given myself the purpose of advocating for a cure. I've exhibed art work, sat for interviews and participated in a couple of tv programs. I maintain a website dedicated to that purpose and I'm constantly looking for ways to stay busy and productive. As long as I feel like I'm being proactive, I feel like I'm creating something positive out of my situation. It
helps me to believe that I'm helping make a difference in other people's lives and hopefully making a small impact on finding a cure. I don't ever want to feel that all my hard work and planning, prior to my injury, was for nothing, by wasting away in the present. So even though we might never get answers as to why life is, the way it is, I think we can find our purpose and give ourselves motivation to keep moving forward.
I hope this helps a little bit. Please check out my website if you're interested: www.christinasymanski.com.

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www.christinasymanski.com

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 a beautiful sunrise over the ocean and realized what a blessing I was experiencing at that moment.
The following night I was up all night with dysreflexia. Not only was I in physical distress, but I was concerned about what was causing it -- bowel or bladder. The next I was exhausted and worse, self-absorbed. I called my doctor and went on antibiotics. But because I was self-absorbed I missed most of that beautiful day until that evening.
I went out for ice cream with my friend and her two-year-old son Jake who has become my best friend. I watched him enjoy his ice cream, play with the other kids and have a ball. Meanwhile, a five-year-old little boy named Quinn was very curious about my legs and why they didn't work. When he discovered that they would never get better, he asked me if I was sad and cried a lot. I said I really wasn't very sad and that actually I was very very happy. I told him that if I was not in a wheelchair I probably wouldn't get to have conversations with adorable little five year old boys who were curious.
Accidents, excoriation, dysreflexia, beautiful sunrises, conversations with Quinn -- life the full catastrophe.
What have I done to deserve this wealth?

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Dan Gottlieb Ph.D.
www.DrDanGottlieb.com
"wisdom of Sam: observations on life from an uncommon child"
trailer:http://www.youtube.com/watch?v=_V4QrekU1Wk

This Memorial Day weekend, I encouraged my husband to dare and finally after 18 months after paralysis.. Dare to do more.. We rented a wheelchair accessible mini van and went from Miami (our home town) to Key Largo, Fla.  I wanted to bring part of our past to our present. I just wanted to feel things somehow were still the same. . We had a wonderful day and I felt so blessed... I know he was happy! I also was!

 

Thierry, tried to go up the mini van ramp without me (I was getting things out from the trunk) I heard him call me and I found him on the ground. He was bleeding from the back of the head and I thought the worse.  In that moment, I called out to the Lord and said "please don't, I need him". He answered me because my Thierry turned out to be fine, needless is to say the paramedics came and he was fully checked. I drove back to Miami, so grateful, he was alive and fine.  I did not care anymore to stay for the night. things are not what they use to be but, we are still here..(I had prepared fully, with all he needed to have. I had worked so hard all week to make this happen). But, it did not matter any more. I had my husband, he was fine! Thank God...  Yes, Dr Dan, what have we have done to deserve this wealth?  So we live and we are grateful for the moments. We live, we love and life is a miracle we cherish.. We will never know why this is our lives now, not in this life time most likely but, we know our lives have meaning and each day is a blessing. Thank God for today and its miracles.  

 

    

 

       

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"Life is a box of chocolates"

 Dear Dr Dan,

I  read your posting for the second time tonight, I realized how your words  are similar to what my husband tells me about his physical distress.

I see paralyzis thorugh my eyes as a care giver but, how about you? all of you  who are deadling with this.  

The physciall stress on the body  must be so ,so very challanging..  I can only imagen.. but,  I will really  never trully know..

I am glad you were able to enjoy a beautiful moment.  

For me, I  will say, I will try my best to do the same each  time I can.

 

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"Life is a box of chocolates"

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

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Dan Gottlieb Ph.D.
www.DrDanGottlieb.com
"wisdom of Sam: observations on life from an uncommon child"
trailer:http://www.youtube.com/watch?v=_V4QrekU1Wk

dr gotlieb,

i appreciate ur words re the question, "WHY?" & "WHY ME?"
ur quote, "You must also say "what have I done to deserve these gifts." i totally agree & have received more blessings since sci than i'v the entire 46 yrs of my prior life. incredible blessings & gifts. thank you, deborah

ivonne, as soon as i read the part about "him trying to get up the ramp without me" i had to slap my hand on my forehead!! oh, how many times has my husband tried to do things without me and it has been a disaster!!! he had a 108 day hospital stay and was out in february and by june we went tent camping.....what an adventure THAT was!!! suffice it to say, we haven't been since!! we did make some great memories though. smiled through those tears.....
we just tend to laugh at each other and shake our heads!!! (of course, that's AFTER i have gotten angry at his insistence and impatience!!)
there have been so many times that i, and our two twenty-something daughters, have almost peed our pants laughing at some of the stuff he does!!! we as a family believe that humor is THE best medicine in all that happens post-injury. it has so much become the "norm" that all of our family and friends go with it too!! of course, like the good dr said, it IS who he was before!! just a bit different....
my husband is seven years (eight in november of this year) out from a 30 foot fall off a bridge he was working on. he has a c-5/6 incomplete injury. i think the worse part for us can be how most people think he is fine because he is blessed to be able to walk, albeit not very well, and that makes them assume he is fine. he hates using the chair and quad cane and that tends to restrict how many things we "do". he is just now accepting that they are tools to help him live a more full life and that is all there is now....living as full a life as possible.
he has constant nerve pain and spasticity from the chest down that makes daily life very challenging. the gnawing pain wears on him. he tends to end his days miserable, but just goes and lays down to try and get "away" from the pain. he does have "accidents" on occasion, those can be sometimes a hit to his pride, but then he realizes that in the scheme of life, it wasn't so bad. he only has use of one of his hands and the other is about 60%. that tends to restrict him in many things.
i have taught him how to meditate, he does his form of yoga (stretching) each morning, which helps. i also massage him almost every day to stimulate the skin so he feels something else other than pain. meds help but he doesn't like feeling deadheaded so he takes a few as possible.
make SURE you try and take time for yourself with a yoga or meditation class or whatever you like to do. remember, you are the only one who can take care of you!!
we came to the realization almost five years ago as to the "why".
that was when i found a lump on my breast that was cancer. i knew then that he lived to help me to live, to see our first grandchild, charlie, born. and then his brother, dylan, too!!! (i only knew my daughter was pregnant for a mere 8 days when i found the lump)charlie was born six months later..........i wish you the same blessings, when it's time of course!!!
yes, you don't know the blessings without the pain......that's just how our life is. we do try to take every moment with peace now. you will come to feel this, i'm sure.
we will be married for 28 years this august, i will be celebrating my 50th birthday next month, each and every one is important, don't let anyone tell you different!!!
celebrate life each and every day.
listen to great music.
feel the breeze on your face.
breath in the fresh air.
touch each others' hand.
eat great tasting and nutritious food.
smile.
cry.
laugh.
create.
oh, and when he is ready, encourage him to do something he likes to do as a hobby.  creativity and self expression is very important to the self esteem!!!
i hope this helps in some way and i haven't been too overbearing. i think this is the first time i have posted here, or one of the first times!!
brightest blessings to you and your family,
nanette

 Nanette, Yes, your mail is very helpfull, you are not overbearing. not at all!! the input is very welcome.  You have been dealing with this situation much longer than me. I appreciate your words and advice. 

 

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"Life is a box of chocolates"

There is no answer to why. We just do not know why, perhaps one day in another life, another dimension, we will know. I refuse to believe things as deep as this just happen at random. How can so much despair, pain, suffering and heart ache be just because.... Lets all remember that we can only really understand our souls with deep understanding of our emotions. The more we can endure the more we get it... What is the meaning of life, really what is it? Is it not to love. Let's love and believe things will get better. No matter what better is. And let's receive and give love. Then and only then we will know why.

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"Life is a box of chocolates"

Hi Dr Dan,

 

Hope you are doing well. I am trying my best to do the same.

 

You asked in this forum a few days ago, if we wanted to know how is it to be a quadriplegia. Well..yes. ...I want to know.

 

I am afraid the answer is impossible for me to understand. Why do I say this? Well, I am not one. I am a care giver..and I realize is not the same. However, I want to hear about it.

 

I want to know how it is possible to triumph despite the limitations. I have read about much despair and pain from many of us. It is all ok.. we are all hurting in one way or another. I hope however, we can all also share the hope....

 

Pain and hope, I am not saying I know the answers because I do not..But, I know these two words really summarize our existence.  The question is... which one are we going to focus on? I want to choose hope. How about you and all others reading this post?

 

Is life worth chosing for hope?  

  

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"Life is a box of chocolates"

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 build a temple.
A child went up to the first stonecutter and said "what are you doing?" His response "what does it look like I'm doing, I am cutting round stones into square ones. I do this all day every day year in and year out" he said angrily.
So the child went to the second one and asked the same question: "I am doing this tedious job in order to feed and clothe my family."
Still curious, the child went to the third one who said: "I am honored to be building this temple that people will come for 1000 years to pray."

I hated this disability and I hated my body. I felt no one would ever really understand me again.
And then I just found both this disability and my body a burden, but I didn't feel hatred. And I felt no one would understand me again, but I felt sad about that -- no longer scared.

And now, this disability still takes its toll on my life, but I am grateful for all of the doors it has opened for me and how it has enabled me to be more compassionate. I am grateful to my body for working so hard to stay alive.
And I still feel no one will ever fully understand me again. I am no longer sad about that, but very comfortable with it.

There was a psychologist years ago that said: "the divine child is always an orphan." At a certain level, the deepest levels inside, we cannot be known -- only to ourselves and whatever higher power we might believe in.

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Dan Gottlieb Ph.D.
www.DrDanGottlieb.com
"wisdom of Sam: observations on life from an uncommon child"
trailer:http://www.youtube.com/watch?v=_V4QrekU1Wk

 

And so they came for 1,000 years..And they found favor from the King. Goodness and mercy followed them.

 

How about this....

 

I try to keep this in perspective and not be consumed by the daily struggles of paralysis in our lives.

 

Dr Dan.

 

"The divine child is always an orphan" This is so true in so many levels.

 

Yes.. We are alone to come to understand our souls, to find its purpose and destiny. And so we struggle for the answers on this journey we are part of. In the solitude of our thoughts, in meditation and/or prayers, Can we see the bigger picture like the stonecutter did? 

 

I am searching!

 

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"Life is a box of chocolates"