Saralee......I love your wriring. I've digested all your stories about your remarkable Grace.......and your very funny and charming description of Eddie. I'm a cat person now ( about 10 indoor.....once feral cats ).......but up to about two years ago......had a constant companion ....Susie......a lab.....some sort of hunting dog, mix. She came to the heartbreaking end of her life at the age of 16..........so I can relate to the feelings you must be going through with Grace. I say that yet......the way Grace has helped you manage your life is just incredible. Firstly.......how all this just " happened " to you.....spontaneously......out of the blue.......blows me away. A horse sat on me as a result of a decision I made ( trying to teach her not to rear up )......I'm not saying I deserved it....we both know that that's not how life works....but you......for your spinal chord to twist....or whatever.....just sounds so bizzare......how you and your wonderful Grace.....your husband ......all of you have dealt with the hand you've been given is a real honor to read about. The way you've made new words to one of my favorite songs......" Amazing Grace "......is inspiring and just wonderful.....how, in my opinion ....God sent she is.......how amazing you are . She.....a rescue dog......you, her rescuer.....being rescued.......and of course, I knew you were an animal person. I could go on and on.....but I'll close by saying.......it's an honor to have met you.......of course you must know that Grace will die.......a happy soul......having served her purpose ......devotedly......with great resolve....and joy.......God Bless......Norma

Saralee....I meant to comment on Gracie's picture.......she's just beautiful.....and her eyes speak volumes......the windows to your soul, I suspect. Again.....blessings......Norma

Norma, do you know about the Charmin' toilet paper that has aloe in it? It's much less expensive than Kleenex and so soothing on the nose. I just went through a whole roll of it, while crying (good tears; natural tears), reading your words.

Buy that toilet paper and you'll never forget Gracie and me :)

Warmly,
Saralee
www.saraleeperel.com

No Saralee....I'll never forget Gracie and you.....period ! But....thanks for the toilet paper tip. I'm a reall " wuss " ........on just about everything , when it comes to life stories....so...I'll use it.....strong when wet eh ?.......Thanks again.

Hi Dr. Dan-

Your post reminds me of a favorite Bible scripture:

"Now faith is confidence in what we hope for and assurance about what we do not see". (Heb. 11:1)

Through my various challenges...I remain faithful that God will help me overcome the obstacle.  As I think about it that's how I've always lived my life.  As others around me freak out, shout, panic, become axious...I remain quiet and pray.

Which leads me to my next favorite scripture:

"And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted,  he will also provide a way out so that you can endure it. " (1Cor. 10:13)

I know my prayers aren't always going to be answered, but I do know there's going to be guidance.

There's times I miss the ability to use my hands particularly when my daughter falls and I can't pick her up.  But than I'm thankful for the ability to talk to her in a soothing way, write & draw w/my mouth with her, watch her play, and simply be with her.  She's learned to adapt and at 7yrs old she has a pure heart to love others as they are.

My final scripture that truly describes me:

"I rejoiced greatly in the Lord that at last you renewed your concern for me. Indeed, you were concerned, but you had no opportunity to show it.  I am not saying this because I am in need, for I have learned to be content whatever the circumstances.  I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want.  I can do all this through him who gives me strength." (Phil. 4:10-13)

Everyday, I learn more and more of God's grace.  Like most, I have my days of discouragement, but I'm quickly strengthened by Him!

I truly appreciate your honesty and how open you are!  I appreciate this opportunity to read the various posts and having the ability to respond.  It reminds me of the times I co-lead the SCI group at UofM hospital in Ann Arbor.


Take care & God bless! 

 

 

Maria,
To your precious little girl who I know has and will continue to make a significant impression in her life.  November 17 is a great day - it's-a-my-a birthday too.  Go get em Scorpio.

Blessings,
JohnF.

Norma, that's how I'm going to be remembered. The person who had the best tip on using toilet paper with aloe instead of Kleenex :)

bless your heart Maria. All of the research shows that people who have faith do better than those without. But faith is all about trust and faith doesn't even have to be in God or a higher power. Faith could be in one's own resilience and stability, faith could be about having faith that all will be okay with you are healthy or not, living or not.
Like I said earlier case is about letting go and trusting. Faith and fear are perfect opposites

I am happy for you

I have been learning many lessons about pain since my recent accident which left me with severe neuropathic pain in both arms. I've learned that when I brace against the pain, it gets worse. When I brace my body and try to protect it from potential pain, it gets worse.
when I experience severe pain and I tell myself this will last forever or is that everything just took a turn for the worse, the pain gets worse. As a matter fact any stories I tell myself when the pain is happening makes the pain worse.

When the pain is acute, nothing can make it go away. But when I simply experience it and feel great sadness for my arms that are suffering, something changes. When that happens, it is no longer my pain but the pain of my body that is suffering.

but I've also learned a very important lesson recently. I've had a couple of days were the pain, although severe, feels more manageable. And on those days, every now and then I would stop and notice that my arms were not hurting and I felt grateful. So the lesson?

It's important to stop every now and then and notice what is not hurting at any given moment, and feel grateful.

I wish that for all of us.

yes dr. i agree  those folks by all means. you dr,when you did so(let your body does on its own), somehow you surrendered and this is what i talked about. it means in some conditions we should act like that. like whole universe is watching us and leting us to do what we want.. we after doing  as far as we consider to do, have nothin' to do except watching. what happens after that, we dont know and we dont care actually because whatever would be the best thing then at that moment.. ''do everything you can and then watch'' or if you cannot do any thing so ''just watch'' ..this way we  let the most powerful part of the existence(inner part of it that every one call it god) work.. otherwise we interferr it and dont let the entire wisdom(which was called hand of god or holy spirit) come in ,in fact..

hi Paris, it's good to hear from you again.
You and your husband are both blessed to have this depth and breadth of love in your marriage. But every marriage is different. I spoke in one of my books about how I counseled a couple in their mid-20s were the husband was in training to become a state trooper when he had his accident and became a quadriplegic. His anger and depression and his wife's being so overwhelmed led to divorce within one year.
And I worked with another couple who were in their early 60s and had a wonderful relationship when the husband had an accident at work and became a quadriplegic. They barely missed a beat as they continued their loving marriage.
And I have a personal story also. My marriage was 10 years old when I had my accident. We had two children but we also had a complicated history. My wife had a malignant melanoma shortly after the children were born and had a year of chemotherapy.
Two years later she developed her first symptoms of multiple sclerosis. And then six months after that I had my accident. Before my accident there were so many unspoken feelings about her illnesses and my ongoing fear of her body's fragility.
We worked very hard for 10 years to stay together, but she couldn't take it and left the marriage.
My disability added a burden to her life that she couldn't handle and she became severely depressed. She did the right thing. She had a chance to find a different life and I had a chance to become more independent than I ever thought I could.

All marriages are different. All start with the foundation of love and all partners think that marriage will last forever and the person they love will never change.

Hi Dr. Dan,
I took your advice and my marriage will be coming to a legal closure shortly.
Yes, this was a rather sad turn of events, but now I can say that I am at peace.
Sometimes being on your own is not bad, not bad at all.
Thanks for your moral support.
Cheers,
10C

Hello I join this in order to try and help my husband he is a C6/7 incomplete injury for 14 years now. He has a tremendous amount of pain and i was wondering if anyone have some advise as to any medications that would help him he has tried so much the last 14 years but still suffers daily. I would be very thankful for any help with this. Thanks so much and May God Bless

hi tency,

A great novelist once said that we live our lives going forward full speed and we can only understand our lives in the rearview mirror. Who knows what events will give us wisdom and which will only cause suffering. Who knows what losses will lead to freedom?
All we can do is live our lives with open minds and open hearts and with the coverage to let go of what is familiar.
I greet your news with great sadness and great happiness at the same time.
Please keep us posted my friend
Dan

hello Nancy,

I doubt if I could add anything after trying for 14 years, but I do know there are lots of good medications and medication combinations. I spoke to a friend of mine who is a pain management specialist at a cancer hospital. Most of cancer pain is neuropathic as with spinal pain. After my own experience dealing with pain for the last four months or so, I was surprised to hear of all the medications I hadn't been aware of before.
So I would hope your husband is seeing someone who specializes in pain.
Also, consider integrative approaches to pain such as acupuncture and other Eastern approaches.
Mindfulness meditation-specifically geared to pain, has a very good track record.
Take care

several years ago I saw a relatively young man who had such severe MS that he became a quadriplegic. Much of our first few sessions were filled with his telling me how difficult his life was. And as we all know, that difficulty included painful spasms, neuropathic pain, a bowel routine that could last up to three hours.
And then there were the issues with the caregivers. He found some of them lazy or resentful when they were asked to do something and this both infuriated him and yet he felt so vulnerable that he was afraid to confront them.
A very difficult life indeed. And what made matters worse for him is his belief that all of his suffering was because of what was happening in his life.

Of course only a C6 quadriplegic could get away with implying that his suffering wasn't all on the outside. See, he couldn't say what all of us have said "but you don't understand".

Adversity is what the world brings to us. Stress is how we react to what the world brings to us.

I learned this lesson so many times. I think that's because I keep forgetting it. I learned it when my wheelchair got stuck in a gopher hole 30 years ago and I screamed for help but none came. And I screamed with rage and futility and hopelessness. And finally I cried. And then I noticed it was a beautiful day. Boy, I wish I had noticed that shortly after I got stuck in that damn hole!

I learned it when my wife walked out on me 10 years later and I thought the adversity I was facing at that moment would kill me. I was enraged and terrified-for years. Imagine how I poisoned myself for all those years with that stress hormone of cortisol.
Of course I would have great emotions when my wife left, I didn't need to wrap my arms around these emotions and feed them and nurture them until they became a full-time obsession. What I needed to know back then was that when I felt fear, I didn't need to do anything about it, just feel it.

And I learned it a few months ago with this extreme neuropathic pain. For the first month, when I felt it I would brace against it and feel terrified that wouldn't go away. And when I wasn't feeling pain, my body was armored in fear of feeling it.
And then I remembered all of those lessons I had forgotten. So now when I feel pain I just feel pain while feeling compassion for my body.

My patient first made peace with his body. Instead of being angry at it, he learned to feel compassion and gratitude for it. So when he suffered with fear, helplessness or her anger, he felt compassion for this man who was suffering.
And then he was able to make decisions about his life. He decided to have a discussion with one caregiver and to let another one go.
And feeling compassion for his body, the bowel routine still talk three hours, but he was much less frustrated.

One of my first teachers said that stress is about wanting the moment we are in to be different. Good luck with that!

Happy July 4 my friends

I appreciate your insights.  I have recently given up on correcting the world for not thinking of folks in wheel chairs.  My daughter and I face challenges together everyday that could easily be removed if only those who designed things in our world had thought...hmmmm how will this work for a person in a wheel chair.  This stuff used to eat me up...frustrate me and I am sure left both my daughter and I feeling victimized.  One thing that really helped...I started taking a stress relief supplement called Oxytocin Factor.  It really helps me handle these kinds of frustrations and stressors and helps me be the mother I want to be.  

Kristi, I've been in a chair now for 25 years. I long gave up worrying about places I couldn't get into or go to because of the restrictions of my chair. It's all how you view things. Many places aren't designed for the elderly either, a few steps can be daunting. Many years ago, when my father had suffered a stroke, I was unable to get to him one day because of some work that was being done at the hospital he was in. A male nurse carried me up the several flights of stairs, then went and got my chair, put me in the chair and I then could visit my father. It's a lot of small episodes like that, that help numb any future frustrations.

I have no knowledge of Oxytocin Factor or any other similar stress relief but if it helps then great. I have noticed though that able-bodied people close to me get stressed more than I do, and so I can only speak from my point of view.

I've also long held held the belief that disabled people should be brought into public access design more.

 This has been a long past week for me!  I am seeking sole custody of my four children and battling with legal people that seem to think mobility limitations equal mind deminishment... very frustrating to say the least. 

I am glad this community is here.  I usually stay pretty well encouraged on my own knowing that the surroundings I deal with are all a matter of how I view and react to them.  There are still some days where I need a 'pick me up' and I can usually find that around here somewhere :) 

I count my blessings and how far I've come since my injury nearly three years ago.  I know I am stronger emotionally, spiritually, and many other ways that I would have merely overlooked had I not been faced with this change in my life. 

I know now there are no limits except the ones I place on myself... really if I set my mind to something I'll figure out a way to get there whether it is the 'conventional' way or inventing a new way to make it possible.  I now work full time and in two weeks I'll also be a full time student at my local university working towards a four year degree to some day be able to further help more people 'like me'.  Prior to my injury I would have never imagined myself attmepting some of what I have now. 

I have discovered an obstacle or dead end or barrier are only those things if I view them that way... those very same things can be my ladder, stepping stone, leap pad....   So I don't walk anymore and the reality is I may never walk again, however I will continue to live and thrive, I have survived, I am alive.. I will thrive! :)  

Hello I'm Nikki,
I read your post, and just wanted to tell you , you have a great outlook on your situation , I'm a mom of two sons 18 & 23 now, but when I became paralyzed at 21 I had my three year old, and right after I got shot I had my youngest, so my first year with paralysis I raised my son , while being pregnant with out any help or support, up until to date I did it alone, and I'll pat my self on the back because thier two great youngmen, If your able to take care of your kids , than your disability has nothing to do with it, theres a lot of us out here raising our kids better than those with the use of legs, I never went through what your going through, I just want you to know you have me in your corner if you need my help with setting who ever straight in the justice system, and I do mean that, so you keep your head up, and knock those obstacles down.

Joleen, I am so proud of you! You are an amazing woman and a great mom! Continue to believe in yourself! I have been injured for almost 2yrs myself and my two kids are my world. My goal is to show them that there are no boundries in life no matter what life throws at you.

Thank you much! I intend to keep on moving foward.  I had a meeting yesterday in regards to my children, I am so very frustrated with this backwards legal system right now.  I will continue to seek sole custody of all four of my children.  I really think anyone involved in legal proceedings involving anyone with any type of disability should have to have some type of knowledge about or have someone work with them on the case that has knowledge about the types of disabilities involved in the situation.   My body may never be able to run a 5K race on foot... but I am able to live a productive successful life and be of good benefit to my children and all those around me. 

I am very glad online communities such as this exist.  I know I certainly am not alone as I go through these storms of life.  I envision a day where persons of all abilities are on a more equal ground as to individual treatment, respect, and all else involved in daily living at home, in our communities, and abroad.  I am more than the cover of this book, there's more to me than the physical flesh I inhabit... and that's the same for everyone... how grand it would be if we weren't so much judged by what others think we're capable of due to the appearance of our physical beings but instead loved and accepted with not just those limitations but also for the great addition we bring to the greater whole we are a part of.

My children are my everything, I love them each dearly.  I continue to pray for the miracle we need to have justice happen for us.  This journey has been a long one, and the road has many more long miles ahead!  Moving forward, onward and upward to better days ahead

Hi Joleen,

The legal system is difficult and often unfair for anyone getting a divorce as these things don't belong in the legal system anyway. What happens is we have attorneys saying inflammatory things to each other making both people involved in the divorce even more angry and frightened. If you don't mind, I have a couple of lhoughts for you:

First and foremost, I hope your attorney understands that disability is about body and not brain. When I became a quadriplegic my girls were five and six years old. In a way I became a better parent – more patient, more able to sit with them and read books, more able to listen to them. If your attorney can't understand these things or is unable to, please please get another attorney.

I don't know the circumstances of the end of your marriage, but is there any chance for the two of you to come together with a mediator and try to resolve this thing face to face so that your children don't have to suffer anymore than they already have.

I have a radio show here in Philadelphia on WHYY FM where we cover of for right of topics related to psychology and relationships. On August 18 we had a very interesting show on something called "collaborative divorce". I don't know if they have anything like that where you live, but it might be worth listening to the show..

http://www.whyy.org/91FM/voices.html

I hope some of this was helpful for you