Spinal Cord Injury and Paralysis Forum / Support / Healing the Mind and Heart

Any stories of improvement DESPITE cord being severed?

DeniseCan — Tue, 07 Sep 2010 16:56:21 GMT

After my grandson had his injury at the age of 14, I was sure he would do better because of his young age. Then found that the teenaged boys are probably one of the most difficult population of patients treated. Hormonal changes, the need for independence and other normal growth and development issues can sometimes interfere with the parents drive to push their youngster into what they know is better for him.Over the past months, the one thing that is NOT clear to me is the correlation on those that show some improvement compared to those that do not advance as much I wonder if there is indeed a direct relationship to the degree of damage done to the cord.My daughter has been reading a book and unfortunately, I don't know the name, but this individual did have a severed cord and is using arms and able to care for himself with a C4/5 injury.I've watched the footage on Brock Mealer (brother Elliott plays for UM) and am amazed at his progress, but also know he puts hours into his workout. My grandson and son were fortunate to meet this family and attend a game with them. I can't help but wonder if Kyle can progress more.Maybe just a Grandma's unrelenting inabilty to accept things as the are.Has anyone had this happen where they show improvement despite the cord being nearly severed?

Why?

paris 85 — Thu, 20 May 2010 20:31:00 GMT

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

16 Yr Old Daughter - C5 Incomplete - Suicide Attempt

Karen812 — Fri, 22 Oct 2010 12:27:14 GMT

Hello everyone! This website is a wonderful source of support & we're lucky to have it. My 16 yr old daughter has a cervical injury from a suicide attempt 6 months ago. She has continued to regain function in her arms, wrist extension, and a little bit of finger movement, as well as some minimal toe movement. I'm so worried about trying to help her cope and adjust to her new "normal" life. Not only does she have to deal with having quadriplegia, she also has deal with the fact that it was a result of her suicide attempt. She was one of those kids that flew under the radar with depression. She never had a history of depression or mental health issues. She is an above average student, a varsity cheerleader, has tons of friends, and a very close family. To ask her now, she can not recall the reason why she felt the way she did. I know teenagers are impulsive, feel things more intensely, and really don't have the life experience we have to assess how bad things in life are, or could possibly be. I know her age is to her advantage, and she is so happy for having a second chance at life, and maybe have the opportunity to help other teens one day. She is motivated with her physical, occupational & rec therapy. And will hopefully return to school soon (she's currently doing home schooling).If anyone can give me advice on dealing with a 16yr old with a SCI it would be greatly appreciated! Thank you!Karen

Teenage Anger

LJ — Wed, 04 Aug 2010 19:15:57 GMT

I'm a little over a year post injury, T4 incomplete and a single parent. My daughter is 16 and seems to be angry with me all the time. I can't tell what is normal teen hormones/rebellion and how much is due to the accident. I've always been very independent and taken care of her and the house, the ranch, ect. Needless to say, our lives are radically different and she's mad at me for it. She's even throw the fact that I'm on a disability pension up in my face, like I'm not working for my money. Parenting a teen is tough under normal circumstances, but it seems much more difficult from a wheelchair.

Dr. Dan's thoughts on healing and personal stories

Dan Gottlieb — Mon, 22 Feb 2010 12:42:18 GMT

I just did a radio show on neuroplasticity, how the brain, with practice, can actually heal significant deficits that we used to think were incurable. The mantra of the fees nor a plastic experts is: "neurons that fire together wire together". So that when we do something enough it becomes habit -- no matter what we do.
We know how that works with dozens of our little quirks. But it works exactly the same way with our worldview. The more we express it, the more we believe it, the more it becomes our truth. "I am a quadriplegic and I will never experience joy again." That's what I felt for the first few years. Fortunately that belief system was not locked in so that when I did experience joy, I slowly changed my worldview.
Others are not so fortunate. They have one way of looking at their lives and that becomes their truth.
A friend of mine grew up with a mother who was mentally ill, negligent and impulsive. She grew up, understandably feeling frightened and unable to trust. Later that year turned to anger and bitterness. She believes that people are not trust worthy, then bad things will happen right around the corner and that disappointment is a fact of her life. She comes by this belief honestly. But neurons that fire together... Although she has been divorced for 10 years, she has two beautiful grown children who adore her, a job that nurtures her, and a grandchild on the way. And yet her belief system hasn't changed at all.
Rachel Naomi Remen tells a story about three stone cutters in biblical times. Their job was to cut stones so that a temple could be built. The first stonecutter, when asked about his job, said bitterly: "my job? My job is to cut round stones into the square ones. That's all I do all day every day week in and week out." As the second cutter said: "I sit here and cut rocks so that my family can have food and shelter." And the third one: "I'm cutting rocks to build a temple where people will come to worship and find solace for hundreds of years to come."

Same rocks, same wheelchair. Different stories.

Any habit can be broken. Even a habit of worldview. First, we have to be willing to open our minds and hearts to other ways of looking at our lives.
And then we have to practice new behaviors. Practice kindness for a couple of hours a day. Four or five times a day, force yourself to smile whether you feel like it or not. Act as though you are happy even if you don't feel like it. Because neurons that fire together...

anybody care to try?

. For more details: "Mindsight: The New Science of Personal Transformation." By Daniel Siegel MD. Or: "The Brain That Changes Itself" by Norman Dodge M.D.

Questions for Dr. Dan - Puzzle Pieces

ratherbflyin — Tue, 24 Mar 2009 00:13:36 GMT

Dr. Dan,

I have a couple of questions for you, but please don't feel obligated to answer if you prefer to not do so. How long after your injury did you return to your practice and is your office in your home? Also, do you use voice recognition software for your writing and, if so, which product? These may seem to be random questions (they are), however, their answers provide information that is helpful as I am trying to put the puzzle pieces of my life together. This is an odd place to be at my age and I can use all of the input I am able to obtain to figure out where I'm going. I feel like kind of an outlier because of my age at injury (56) and being female. What is important to me now is entirely different than if I had been injured at an earlier age.

-----------------------------------------------------------------------------------------------------

Dr. Dan?s Response:

be happy to answer your questions. I got out of rehab in August 1980. The following month I saw a patient or two a week in my house. I think that was okay despite the fact that I felt so fragile physically and emotionally. It was about six months later that I went back to my full-time job running a drug treatment clinic in Philadelphia. But because my health was so unstable, I didn't want to jeopardize my disability insurance so I volunteered for about a year before I resumed full-time.

I use Dragon dictate naturally speaking. It's relatively inexpensive (about $200) and works really well. It does have some conflicts with AOL and Microsoft outlook, but not anything major.

Daniel Gottlieb Ph.D.

DrDanGottlieb@aol.com

www.DrDanGottlieb.com

Blog: www.philly.com/askdan

----------------------------------------------------------------------------------------------------------------------------------------

Comments from ratherbflyin:

Thank you for answering my questions. I am envious of your ability to resume your practice. Mine has been stripped away and I'm struggling to figure out "what now".

I have been totally involved with going to doctor?s appointments, physical therapy, occupational therapy, and pool therapy since my accident in December of 2005. Land PT has ended and pool therapy is winding down. Next phase is a self-directed combination of home based and pool exercises to maintain functional gains.

All of this is to explain why I?m in a questioning mode. I?m filing away answers to random questions or shared experiences as I attempt to extrapolate information that might help with construction of a new and very different life. The answers from Dr. Dan are a few more pieces of the puzzle.

I just discovered that my new laptop computer has a Microsoft voice recognition and computer function command software program loaded in the hard drive that is one of the unadvertised accessibility features. It is wireless and bluetooth compatible. Computer information, as follows:

Dell ? 17 in

Studio 1737

Intel Pentium Dual CPU T3400 @ 2.16 GHz

4 GB

64 bit OS

Windows Vista Home Premium

Service Pack 1

-----------------------------------------------------------------------------------------------------

Are there others out there searching for answers to questions? Ask Dr. Dan! His answers and your comments might be just the information needed by a reader of this forum.

6 Years ago today…remembering Christopher Reeve.

Paul — Mon, 11 Oct 2010 03:54:30 GMT

http://www.PaulGaleNetwork.com/home/2010/10/10/6-years-ago-today-remembering-christopher-reeve/Hi everyone, here's to always remember Mr. Christopher Reeve. May his legacy last forever.

In memory of Christopher Reeve

Jessica — Sat, 09 Oct 2010 16:48:58 GMT

I recently read an amazing speech from Christopher Reeve, and wanted to share it (attached). It's both incredibly inspirational and humbling, plus it gives great insight into the possibilities of medical advancement.. I also read about the poster that NASA gave to Christopher soon after his accident, of a spaceship launching, which read "We found that anything is possible". What wise words. I couldn't find an actual picture of this poster, but found another great picture to use.The essay was adapted from Reeve’s closing speech at Omega Institute’s Living a Fearless Life conference in New York City in the spring of 2004.My favourite bit is right at the end :)“There was this guy wearing a blue scrub hat anda yellow gown and with a Russian accent, beingsome insane Russian doctor . . . I laughed forthe first time, and I knew that life was going tobe okay.” - Christopher talking about Robin Williams`visiting him in the hospital shortly after theaccident.In memory of Christopher, Jessica, South Africa

broken bodies and broken hearts

Dan Gottlieb — Tue, 14 Sep 2010 15:20:35 GMT

Broken bodies and broken heartsYou may have noticed that we changed the name of this forum so that we could be more clear about what we can and cannot help people with. Not being a medical doctor, I can't offer medical advice. So this forum is about what happens in the wake of the kind of trauma either we or a loved one is going through.Some people survive a trauma but don't survive the emotional consequences. Some not only survived, but thrive and find themselves more grateful and open after an often long period of healing. What's the difference? Well, it's not about strength or resolve, although that's part of it. It's not about attitude or faith although they are major players also. It's also about mundane things that are out of our control -- things like financial resources, social capital (strength of one's community), emotional and intellectual resources.It also depends on one's history. If there have been other trauma, it makes it more difficult. If there has been a history of depression, substance abuse or other mental illness, one is at increased risk for a relapse.And most important -- there is so much we can do to help heal our racing minds, our broken hearts and our shattered spirits.Of course, I don't have all the answers. I don't even have all the answers about why and how I have gotten to a point where I am grateful for the life I have and more loving than I could have ever imagined.Last year I was seeing a man who was unhappy in his marriage and unhappy with his job and he didn't quite know what to do about either one. This had been going on in his life for nearly 5 years. Without looking up and without realizing who he was speaking to, he said: "I dunno Doc, sometimes I feel paralyzed." Then he looked up and realized what he said and who we send it to and I smiled warmly and said "sometimes I feel paralyzed too and it's just an awful feeling."What makes you feel paralyzed and what does your mind/spirit need in order to heal?

Anyone out there 30 yrs post accident?

Dbhinkle — Wed, 16 Jun 2010 04:33:48 GMT

I am 29 yrs post accident with Brown Sequard SCI. I have always had problems with mucsle clonis and spasticiity. I was part of the Study for the MRI and had surgery with Dr. Harry Hahn at Craig before he passed away. Life has been very fullfilling. you have to have an attitude of not being handicapped but being "handi-capable". You can do anything you set your mind to do. As I get older, I wonder if there are many people out there with this many yrs after their accident. I wonder if there are similar issues we can share and then help others.
Dave

C-5,C-6 hand tendon transfer

aan1096 — Thu, 01 Jul 2010 21:36:55 GMT

Could anyone tell me how they are doing with their hand tendon transfer? My brother is deciding on the procedure and would really like some feedback first.
aan

Pressure Sore

Tiffany — Tue, 31 Aug 2010 15:14:34 GMT

[color=blue][/color] I am dealing with my fourth pressure sore and I've had it for over a year now. I have not had much luck with my doctors finding a way to close it. I've tried two different wound vacs and no change at all. My sore is on my right leg right in the area where a woman's underwear line would be. So, it's in a very odd place and it's not something I want to learn to live with, which is something I've been told is a possibility . Does anyone know of any new treatments out there for wounds that are deep and tunnel?Tiffany

Views on HGH, Human Growth Hormone?

Steven — Thu, 02 Sep 2010 13:34:32 GMT

Hello, I'm a T3 complete ASIA A, 10 months post accident. I met with a Dr. recently who wants to start me on large doses of vitamins, fish oil and HGH. The vitamins I can agree with, but I'm concerned about using HGH to try and stimulate new nerve cell growth or repair. What are your view points on this?Steve

Questions about phrenic pacer

Annemarie — Sat, 28 Aug 2010 23:02:17 GMT

Hi,My name is Anne. I'm a C2/C3 quadriplegic due to a spinal cord injury. For the past 17 years I had been using a noninvasive ventilation system in order to breathe. But recently I had to be hospitalized and trached. Adjusting to life on a trache has not been easy for me, and I am desperately looking for another solution to my breathing problems. I am seriously considering the diaphragmatic, or phrenic, pacemaker and would love to speak with someone who has one. Please write me if you can help :).

Losing Hope?

Karen C — Sat, 07 Aug 2010 00:37:48 GMT

My dad suffered a SCI due to a skydiving accident about six years ago, and for the majority of the time he's been in and out of the hospital dealing with pressure sore issues. For the most part he has stayed fairly positive...but I'm afraid this last hospital stay really took a toll on his spirit. Unfortunately, he is geographically far from the rest of the family (my dad is currently in Florida, my mom and brothers in VT, and I'm in Denver). We're trying to get him to move up north to an assisted living facility very close to home, an idea that he was previously very excited about, but he seems to have lost his spark. It breaks my heart that I can't do more for him, and while visiting him (I'm actually in FL as we speak) I'm trying my hardest to make him see that life is still worth living. I'm so afraid he's on the brink of giving up, and I just don't know what to do. I guess I'm reaching out for any help, any suggestions, any advice, anything that I can do to.Thank You.Karen

Closure....is it for real?

Trish-411 — Sat, 17 Jul 2010 20:33:13 GMT

Closure! What does that really mean? You always hear people talk about getting closure, or they will feel better if they get some closure. Can you ever really get closure from an event? What does closure feel like?I ask because this week was the 8th anniversary of our accident. Humm...maybe I want closure. That day was the worst day of my life. We were about three hours into our summer vacation when the unthinkable happened. We were all taken to different hospitals in a city where we knew nobody. Everyone was looking to me for all the answers. I felt like the weight of the world rested with me and not much has changed. That part still feels true today. While I was waiting for an orthopedic surgeon to arrive to fix my hand and wrist, the other hospital called to inform me that my husband had a spinal cord injury, was on a vent and his brain was swelling. I had state troopers trying to investigate the accident and 2 young kids that were scared to death. That day I knew my life would never be the same.I often think about the 18 year old girl that hit us. I want to know why. I want to know what happened. I what to know what could have possibly caused her to become so distracted that she crossed a divided highway at 75 mph on a beautiful Sunday morning. And maybe I just want to hear her say I’m sorry.Unfortunately our system doesn’t work that way. She is just some faceless teenager in my mind that changed our lives and shattered many dreams. I so vividly remember that moment, the hours, the days and the weeks that followed the accident.Does closure really happen? If it comes from within, then why do I want to give this girl a piece of my mind? I know I will never speak to her, but how do you remove that thought from your mind. I don’t want a hair pulling, “scratch her eyes out” encounter on The Jerry Springer Show. Maybe I just wish for a sincere I’m sorry and some closure.

LOOKING FOR THE DOOR TO OPEN

darcarca — Mon, 28 Jun 2010 12:56:43 GMT

"The Search for my Future"
I am 53 years old and was paralyzed as a complete t-12 paraplegic Aug. 3, 2007. I was let go from my job Sept.9, 2009 and have been looking diligently since then to find a new career. I have felt led to get involved with adaptive sports or something related to ADA where I can give back to the community that has blessed me with so so much. I have fought to stay positive and keep the faith and I pray every day that God would reveal his plan for me. I have a BS degree with 18 years of teaching and coaching, 4 years of owning my own business in real estate development and 6 years of sales and management in the custom home business. I am a christian man who loves life and who is willing to work hard as I did overcoming the adversity of my accident. I know there are many of you out there that have experienced the same situation. I live in Houston, Texas and need some direction, advise or an opportunity in order to stay positive with my search. My email address is thedash1313@gmail.com if you would like to contact me.
No matter what the storm, when you are with God, there's always a rainbow waiting.

God Bless,

Daryl Blanton

When does acceptance set in?

Wheelchair Mama — Fri, 04 Jun 2010 09:09:30 GMT

I am a C6/C7 SCI 9 months post injury. I read the threads and posts on this site everyday and I am amazed at what a great community this is. So I thought this would be the best for me to post my question. For those of you that are years out, when did you (if you did) come to terms with your new self? How long did it take for the emotional pain to subside? I would appreciate any comments or advice.

Am I doing too much?or not enough?????

Scarlet — Sun, 06 Jun 2010 17:05:47 GMT

Dear Dr. Dan,

I often wonder if I am doing too much for my boyfriend or not enough. I don't baby him i make him do things on his own that I know that he can do or attempt to do. If he can grab an item and he asks me to do i tell him you can reach it you get it. I ask him to get all his stuff ready if we are going out and not to wait on me or someone else to do it for him because everything he needs to go out is within reach. He gets upset because i want him to do things he can do on his own. Is it wrong of me to do this to him, to want him to start becoming independent again or at least trying to? Sometimes i tend to ask him what he wants to do because of the fact that he is indoors all day but cant get him to give me a definite answer i do this because he is indoors all day and it must be very frustrating because he really has no choice. To me it does not matter what we do on our outings as long as he is happy doing whatever it is we are out doing is fine with me. But it is difficult to get him to make a decision. This past weekend we had a pretty tense arguement because he didnt want to go home but couldnt tell me what he wanted to do or where he wanted to go it was pretty late and not many places were open. He said he just wanted to get out and go somewhere any where that wasnt a confined space since he is now confined to a chair and cannot get up and walk. It is very frustrating that i cannot seem to satisfy him in this aspect. I feel that he is confused and very frustrated that he cant just get up and run or walk away and do what he really wants to do. And i am extremely frustrated that i cant help him that i cant comfort him and help him relax.I wonder if i am putting too much pressure on him and if i should just stay away for a while because i am adding to his everyday stresses.

Scarlet

SCI steals and robs from all

Trish-411 — Wed, 15 Apr 2009 16:51:50 GMT

It is very obvious how SCI steals and robs from the person that is suffering from the injury. That is abundantly clear to me from watching my husband. Sometimes it?s the big things and other times maybe a little thing. My heart breaks for him because I understand how difficult this is.

I think from my side it isn?t quite as obvious to the world what has been stolen from me. The biggest thing I am thinking of is freedom to pursue my life as a daughter, sister, and even a mother. My first priority is always my husband because his needs are the greatest. Unless I have a hired nurse here, I am typically SOL. Most family members are too nervous to stay with him for any length of time, and they have flat out told me they are uncomfortable learning his personal care. That leaves me, me, and me to care for him (plus our hired nurses).

This scenario is especially difficult as my parents are aging. There are so many times when I want to help them, be with them?but I just can?t. It?s shower night, bp morning, no nurse for the next 3 days or a host of other situations that leaves me stuck at home.

My mother is 75 and my father 82, and I am starting to feel that my husband?s SCI is robbing me from the last years of their lives.

My father was in renal failure for many years. He was on dialysis but was also on the transplant list. One morning, what I never thought would happen, happened. I remember that morning a few years ago when my mom called me at 5:30 a.m. to tell me that they found a kidney for my dad and they were off to the hospital for a transplant. Her voice was shaking, and I knew she needed me but all I could say was??I?ll be there in a few hours when the nurse comes.? That day I hated my husband?s SCI. My parents needed me more at that moment, but I was stuck. Nobody would come and stay with him and all I could do was wait until his nurse showed.

There have been many other instances where this type of thing has happened. I miss the critical family events because of my responsibilities here at home. Yes it is another guilt trip but also a longing for my family that I dearly love. One day I was so frustrated that I couldn?t help out with some family crisis that I actually told my mom that she and my dad had better plan on dying on a Monday ? Thursday between 8:30 a.m. and 3:30 p.m. or they could just count me out. That?s how I feel sometimes. It?s like being Cinderella everyday. My coach turns into a pumpkin every day at 3:30 p.m., and I?m back on duty. I can always get away from my paying job. It?s this other job at home that has me prisoner.

Currently, my brother is facing a crisis of monumental proportion. I wish I could do more, but this damn SCI gig is once again holding me hostage.

19 Year Old C-5

dbowers1995 — Tue, 13 Apr 2010 09:10:07 GMT

My son had a four wheeler accident 01/01/09 leaving him paralyzed from the chest down. He has his good days and his bad, he has not regained use of his hands which would be a blessing to see him be able to use them again. I am trying to find someone in his condition for him to be able to open-up to and ask questions and so forth. I was thinking if there was someone that lived close enough to him that it would help so much having someone to relate to his problems and give him encouragement. He lives in Elkin, North Carolina. Thank You!

wheelchair replacement

kleofarm — Mon, 24 May 2010 14:02:59 GMT

If anyone out there that has a wheelchair upgrade and or know of an extra one that I can use while training the service dogs for someone in one I would appreciate it? I was in a wheelchair and Discovery Channel Taped my surgery and now I would like to train them for you because PAWS FOR FREEDOM YOUR FREEDOM....BEING THERE IS WORTH MORE THAN SOMEONE TRYING TO IMAGINE IT!

GOD BLESS YOU ALL...WE ARE NOT ALONE AND YOU KEEP ON PLUGGING ONE DAY AT A TIME MAKING EACH DAY THE BEST YOU CAN....
can e-mail me for both needing a paw for freedom or help me set up as I am recoverying and my daughter is presently bedridden also....kleofarm@hotmail.com

Another Newbie

Valola — Wed, 21 Apr 2010 14:02:58 GMT

Hi
I have just spent the last 2 - 3 weeks reading all the posts on this forum. I cried, I laughed, I agreed, and I thought hmmm.

My husband is C4 complete. We just had the 3rd anniversary(?) of his diving injury. I especially relate to alot of the things that Trish says, I am just not brave enough to say them.

I am my husbands sole caregiver. While I don't have to worry about a trach and suctioning or a TBI, he does have short term memory loss. And has chronic pain. The thought of the extra work for the holidays, birthdays, or any special event makes me exhausted, but nobody gets it. It is really just another day with additional work. Nothing feels special anymore.

The list of things I want really hit home - 6 hours of unterrupted sleep sounds like heaven.

It was really nice to read what other people have said and to know that I am not alone.

My fourth spinal cord surgery coming up

Redscot1 — Mon, 15 Mar 2010 13:07:31 GMT

Hello Dr. Gottlieb,

I am about to have my forth spinal surgery in almost 8 years. First, it was my L-4 that exploded and severed my sciatic nerve, then another a year and half later. 2007 I had a Bi-lateral fusion at the L-4 and L-5, and now it is the S-1 that will be fuse together with the previous one.

For years, I have been in constant chronic pain and the numbness and tingle of my left leg and foot and nothing works. I am frustrated, and scared that I will never be "normal", that I will never walk properly again and I don't know what to do. It seem that every other year or two years something happens and I don't know why. I do not do anything to cause the disc to go out and they keep going downward.

Can you please help me to understand why this is happening and what I can do to stop this. I am a patient at the Spinal Institute at Cedars Sinai in Los Angeles, California. My doctor is brilliant, by I feel trapped inside this broken body. Most of the time I feel myself as a old person who can barely move.

I have been a big fan of Mr Reeve's since I was 11 years old when I first saw him as "Superman", and he is what got me through my first surgery, I am trying to focus on his words of strength, compassion and hope, but I sometimes it is very difficult. I see him as my light to not give up, but with so much happening to my spine, I feel I am losing it.

Please help me if you can,

Sincerely,
Sherrell S. Frederick

wisdom of Sam. Wisdom of all of us

Dan Gottlieb — Mon, 15 Mar 2010 12:58:32 GMT

As I write this, my new book "Wisdom of Sam: Observations on Life from an Uncommon Child" is arriving at bookstores.

My original book "Letters to Sam" was wildly successful and sold in over 20 languages. In that book, I wrote Sam a series of letters expressing all of the love, and wishes and a grandfather would wish for his grandson. But it also expressed something else -- the great compassion and understanding a quadriplegic grandfather has for a grandson who is on the autism spectrum.

But now, nearly 10 years old, not only is Sam speaking, he is remarkably eloquent and insightful. So this book is about Sam's wisdom and his very unique way of looking at the world. But it's not just about his wisdom, it's about the wisdom of all of our children. They are born with and uncanny ability to experience joy, awe, love and trust. And after a year or so, they can feel compassion.

For the first year of his life, Sam stayed away from me as he was afraid of my wheelchair. When he was about 18 months old my father died and we had a graveside funeral. He was on the other side of the grave in his mother's arms and I was crying quietly. But when he saw this, he insisted that his mother bring him to me so he could sit on my lap. That kind of compassion has stayed with Sam. He cares deeply, he understands a great deal and he is kind. Just like the rest of us.

I'll tell you more stories about Sam and subsequent postings. But first, take a look at the book trailer and you will get to see exactly what I am talking about:

http://www.youtube.com/watch?v=_V4QrekU1Wk

Spring Cleaning

Trish-411 — Sat, 13 Mar 2010 18:00:40 GMT

New topic! This past week I had an impromptu closet cleaning session. I cleaned out the walk-in closet in our upstairs master bedroom. Before the accident, this used to be ?our? room. Now I guess it is my room. My husband has all of this clothes and everything he wants downstairs in his bedroom. I sleep down there nearly every night in what I refer to as my ?on call? bed, but all my stuff is still upstairs. Anyway, here is the problem. All of his old clothes and other junk are still occupying space in my closet because I just can?t or don?t get rid of it. He doesn?t even know it is still up there. For nearly eight years now, stuff that he can never again use or wear is still there. Stuff like his golf shoes and clothes, ?tight jeans?, suits, ties and shirts that just don?t work with a trach. He doesn?t want or need this stuff. Wonder what I?m thinking?that he will wake up some morning and say ?Hey bring me down my old golf shoes, I think I?ll wear them today.? Or am I thinking that maybe someday he really might need them. I?m not consciously thinking any of that, just holding on to this stuff for some unknown reason. I easily gathered 2 huge bags of my stuff to donate but didn?t toss anything of his.

I didn?t really have this problem when my first husband died. His death seemed to have a finality about it. I was able to clean out our closet and donate his things a week after the funeral. I knew he would never need his stuff, so I was able to get rid of it. It almost feels like we have some innate ability at some level to deal with or understand the finality of death. Disability doesn?t feel that same way, at least not to me. Although I was only 27 at the time of his death and didn?t have much practical experience, at least I got my closet cleaned out. Many people find this hard to believe, but I think it was easier to cope with a husband?s death vs. coping with a husband?s C3-C4 SCI. I wasn?t prepared for either, but death seemed easier. I hate to say the word easy because none of it is easy, but hopefully you understand what I mean.

Anyway, here?s the question: Is anyone else holding on to stuff they know they will never again be able to use? Why, and do you think you will ever be able to get rid of it?

As I say each year, spring cleaning will come around again next year. Maybe next year will be the year.

The 4th Year

ratherbflyin — Tue, 16 Feb 2010 02:26:08 GMT

I don't know what it is about this fourth year post injury. It seems that flashes of remembering are more pervasive than ever. I have been watching the Winter Olympics in Vancouver and remembered watching the last Winter Olympics in 2006 from my hospital bed in the rehab center.

That little flicker of remembering turned into a reflection entry in my blog. In a nutshell, I realized that I still love watching the Olympics, as much now as I did before my accident. That is one blessing this injury has not taken away!!!

See "Lessons On Life: Tetratales" Blog:
http://tetratales.blogspot.com

The Most Depressing Day of the Year

Trish-411 — Sun, 24 Jan 2010 20:43:48 GMT

The most depressing day of the year; did we just survive it? I saw on the news where a UK psychologist determined that the last Monday in January is the most depressing day of the year. It is partly blamed on the weather, post holiday bills, and the mounting stress of New Year's resolutions. What do you think Dan, any truth to this rumor? Apparently the cure is to plan a vacation in paradise. Wow if it was only that simple and doable! And really, I would be almost giddy if the only things causing my sadness were holiday bills, the weather, and my poor execution of New Year?s resolutions. I guess it?s all relative.

Funny though, but today didn?t feel so depressing at all to me. Maybe it?s because the Colts won the AFC Championship yesterday afternoon. The depressing part of that whole thing was I got elected to host the AFC Championship TV game viewing party at my house. After a couple of glasses of wine, my sister got a little too excited and knocked over 3 large pillar candles on a sofa table in my family room. Then one of my nieces stopped up the toilet. Now that?s depressing! I guess we Hoosiers can thank the Colts for making this most depressing day of the year a little more bearable.

I always think it is interesting how people use the word depressing. I guess there is "depression" just as a word that people throw around and depression as a clinical diagnosis. I think the two are very, very different.

Hope everyone else survived. Apparently things will start looking up any day now.

Anniversary

ratherbflyin — Tue, 08 Dec 2009 02:03:52 GMT

Today, four years ago on December 8, 2005, was the last day of life as I knew it. The remembering of that day has surfaced over the last week more significantly than in the previous three years. Interesting to note.

I have found myself wondering if I appreciated that rather ordinary day, the fourth of five days of orientation for a new professional venture. Did I relish my ability to sit comfortably on the edge of the hotel room bed watching an early morning worship program with my roommate as I telephoned my youngest daughter before she left for school?

Did I appreciate being able to use both hands fully as I took notes that day and my ability to walk wherever I chose without consideration for accessibility? I wonder why the woman seated to my right used a cane to steady her tentative gait? I was curious then, but did not ask as I probably would now.

I remember that final walk across the parking lot with my roommate, discussing which car to drive to the restaurant for supper. Mine was closer and it was a little cool outside, so we chose to take my jeep.

Minutes later, I was praying for a miracle to spare us from the crash and, thank goodness, my passenger was spared and able to go home to her family the next day. I was not so fortunate. I could not move my legs.

That was the beginning of this "after the accident" journey that is still in progress...a limbo land of unpredictable tomorrows. I know I took a lot for granted before being hurt. I just hope I was appreciative of the blessings that came so easily.

I'm blaming this brief trip into the past on our recent snow. Snow is rare in the South and the quiet wonder that comes with it triggers a multitude of good memories from life in the Midwest. No surprise that I should trip over this stumbling block as my mind became quiet enough to recall...

--------------------------------------------------
"We do not know the true value of our moments until they have undergone the test of memory." -Georges Duhamel, The Heart's Domain

"If you can look back on your life with contentment, you have one of man's most precious gifts -- a selective memory." -Jim Fiebig

Tornado LOL!!!

ratherbflyin — Sat, 23 Jan 2010 13:52:59 GMT

Only my friends from this forum would be able to appreciate the humor in this situation.

I have been working to correct my bizarre sleep patterns, hoping that this is a first step to resolution of other issues, One factor that I identified as a contributer to not getting to sleep at a reasonable time is procrastination of my bowel & bladder program.

Last Thursday, I decided to start experimenting with solutions to this issue & too try going back to the evening schedule I was on in rehab. The only reason this routine changed when I returned home was because it was not convenient for home health. So, I decided on 5PM.

Everything was going well when about halfway through the process my cell phone rings and I hear the panic stricken voice of my oldest daughter telling me that she and her kids are driving and a tornado is directly overhead. I had no idea that the rain we were having had progressed to severe weather.

"Mom, what should I do? I'm really scared!" She asked if I could see on the TV what direction the storm is going. I told her no, that I was in the bathroom. I proceeded to talk her through actions to take to get as far from its path as possible.

In the midst of this conversation, my youngest daughter called to verify that she has given her housemates at her sorority correct instructions to go into a bathroom in the center of the house.

Next, I hear the tornado sirens sounding and think, well, I'm in a bathroom, just not an interior one and make peace with the possibility that I might be sucked up into a funnel cloud in the middle of my bowel program. Talk about interference!

My oldest daughter called back and said they had gotten out of the way before it touched down and that she and my grandchildren were heading to my home to calm down. My youngest daughter sent a text that they were ok along with a beautiful photo of the funnel cloud from her campus.

What timing!!! Most of our tornadoes happen after dark or drop down suddenly, then disappear over the mountains. It is rare to be able to photograph them.

I wish I could share the photos. My granddaughter took hers from their car. They were amazing and proof that they were indeed below the funnel cloud. The tornado touched down in our historic district and my daughter's neighborhood. Fortunately, there was only property damage and no injuries.

This was definitely a first!!! I did manage to get to bed at a reasonable time that night and slept well.

(PS - The reason my daughters call me for advice on tornadoes, besides wanting to hear a calm, reassuring voice, is that I grew uo in the land of Oz, Kansas.)

Teddy Pendergrass -- a personal reflection

Dan Gottlieb — Thu, 14 Jan 2010 13:50:00 GMT

I first met Teddy in 1984. It was one year after his accident and he had just been released from rehab. He was feeling hopeless about his future and didn't think he wanted to go on living. What I didn't tell him at the time was that it was just four years after my accident and I was suffering my own clinical depression.

He said I was the only one that could understand what he was going through and if anybody could help, he believed it was me. I knew he was right about the understanding part, but because of my depression, I got our boundaries confused. Sometimes in our work together it felt like saving his life was the same as saving mine. I finally called in one of the teachers where I studied family therapy to help me, but it still felt like there was a part of me sitting in the other wheelchair in my office.

Although he said he was suicidal, he really didn't want to die, he just didn't know how he could live like this. I experienced the same thing as, I am sure many of us did. After several meetings, I realized traditional talk therapy would help. He wanted to know how he could live or he wanted to die. So I had him and his wife and children call everyone in their own support networks to meet in their house one Saturday. There were close 100 people in his house and once they learned about his fears and his hopes, they went into action. They organized small groups, each one addressing one of his concerns. As the meeting went on, I watched Teddy's eyes brighten. And for the first time in the six months since we had met, I knew he was finding answers to his question: "how can I live with this terrible disability?"

Even though it's unusual, I am comfortable telling this story because Teddy was so comfortable telling it, and he told it often. One day a few years ago my daughter called me to say that she was waiting in the checkout line at the grocery thumbing through jet Magazine, reading an article about Teddy when she saw my name and his description of our work together. She sounded amazed "there you are, the whitest man I know and your name appears in jet magazine!"

It's also unusual but we became friends shortly after treatment ended. And although I always felt somewhat protective of him, it felt we were kindred spirits and wanted the companionship and understanding we could offer one another. When I got skin breakdown, he understood because he had skin breakdown. A bit higher level quad then me, he couldn't feed himself, but every time our families got together, it was the only time everyone was comfortable and our issues weren't really issues, just simply facts of our lives.

Last year, on the 25th anniversary of his accident, he organized a "celebration of life" at the Kimmel Center. There were many celebrities there praising his accomplishments. But his main agenda was to thank the people who helped save his life. I was honored to be one of those people. But as I was being handed this beautiful award, I thought that I could be giving him the same award.

Shortly after that network, Teddy began making music again, then he traveled. When he realized both were too taxing, he began producing and nurturing young talent. Then he established a foundation to help those with spinal cord injury.

About six months ago, we had lunch together and he told me about a ministry he was trying to put together. It would be about teaching the lessons he had learned about life and love. His vision of his life and its purpose kept expanding all the time.

Teddy lived his life in a way I wish for everyone I care about. He lived a life of gratitude, compassion, joy and love. The word "brother" is probably used much too often. But the day Teddy died was the anniversary of my father's death. On that day I mourned for two family members.

new sci w/lots of questions

RIMorgan — Fri, 25 Dec 2009 13:06:10 GMT

Hello, this is very new for me. less that two months, since my accident. I am a male 46 yrs old. T9 fracture, paraplegic. I was wondering about sex...not really about the act but I have found that for that last 4 days I have been awakened every day with sticky underwear.....(I feel 12 yrs old again). Is this normal? RIM

MALE SCI T11,T12 IS IT POSSIBLE HAVE A CHILD

thimothi — Tue, 05 Jan 2010 06:34:55 GMT

HI I WANT TO know is it possible,MALE SCI T11,T12 HAVE A CHILD

IS POSSIBLE HOW CAN I GET WHAT IS THE PROCESS,AND HOW MUCH EXPENSIVE.

I AM LIVING IN INDIA, I want to know, can I still father children?

The Playground of Life

Trish-411 — Sat, 26 Dec 2009 21:31:18 GMT

I think I viewed my married life like a seesaw; the two of us working together to make everything go. There was a certain rhythm to our life, and together we felt balanced. Suddenly comes the accident and now the balance has been disturbed. I feel like I?m on the seesaw alone. Problem is that it takes two to make a seesaw go. I have spent the last years trying to get someone, anyone, to jump on the other side so that my life would feel ?normal? again. But I think I?ve finally come to realize that I don?t have the power to coax anyone on my seesaw if they aren?t looking to get back on. But where does that leave me, I?m stuck on this damn seesaw, and now it?s time to get off. So how?

So last week I gave it a little try. I spent 3 days away with the kids trying to relax and regroup only to return home and immediately jump right back into my neurotic ways. Why does that happen? I feel the need to go into hyper-drive to make up for everything I didn?t get done while I was gone. Why can?t I just relax in my own home?

There are so many things I need to change about myself but how, and do I deserve to give myself that opportunity? As a caregiver I spend a lot of time pretending that everything is fine. It?s almost like you have to because there is a job that must be done. That job requires me to be ?fine? so that is what I tell myself. But sometimes I?m really not fine. Unfortunately nobody wants to hear that I?m not fine, so I?ve spent most of the last seven years saying I am. People start to get panicked when I appear to be anything other than fine.

I guess maybe that is what next year is about, learning to really be fine in this life I?m in instead of just pretending. I definitely think it is going to take a new lens and a new way of looking at life. This year I?m getting off the seesaw. I really don?t want to leave the playground, so maybe I better figure out how to get on the swing or slide. I?m not sure if there is a question in all of this mess. Is this really possible, maybe that is the question?

Bah Humbug

Trish-411 — Sun, 06 Dec 2009 06:22:31 GMT

Dan,

So what?s the reason for the season? I can no longer find it because everything feels clouded by our situation. This is the 8th holiday season living with paralysis, and it seems like each year it just gets harder for me. Like for everyone, there is more work, unrealistic expectations, too many obligations, winter weather, in laws and a host of other things that complicate life. But in my world, it feels so much more intense. During the holidays, there are 101 things all tipping the scale toward insanity. The irony of the whole season is that just when you have so much more to do, you have so much less help to do it with. Essentially I am left with nearly the full load of caregiving responsibilities. Nurses all take vacation, but SCI doesn?t.

The first holiday season, my husband was still in rehab. I flew home to pick up the kids and then flew back across the country Christmas morning with them. I guess I thought we would somehow find joy in just knowing that we were all together and had survived the accident, but I never felt the joy or happiness I had expected. Instead it was a lonely, agonizing Christmas in a hospital with 2 young kids and a husband that barely knew what day it was. A vent was breathing for him, he had zero desire to be out of bed celebrating anything, and this was nearly 6 months after the initial accident.

The next several years were mostly trial and error. I had this illusion that everything could still be the same if I just got organized. I thought we could have the same traditions, same decorations, the same everything, but no matter how hard I worked I couldn?t make it all happen. Instead of watching our kids open their gifts on Christmas morning, I?m doing my husband?s bowel program in disbelief that this is now my life. We?ve tried various rearrangements of the schedule only to feel disappointment. I?m just one person trying to do everything and can?t seem to keep anyone happy.

I don?t know what the answer is. The years I try to make it all happen, I am physically and emotionally drained of every ounce of energy I have and can find no joy at all. The years we just stay home and skip everything, I feel so cheated out of my life. I give up all the things I love about the holidays and instead just feel loneliness and isolation. We send the kids to all the festivities, but my husband and I just sit home alone in silence. It is a suffocating feeling when every celebration in your life is fully dictated by someone else?s needs or desires.

Maybe I?m looking for a solution that doesn?t exist. Seems like I need a magic wand or a time machine. I just long for a year that doesn?t end in two hours of tears and sobs wishing I was anybody but myself. Oh boy, I can hardly wait.

Dr. Dan has been under the weather

Gerthro — Mon, 16 Nov 2009 05:47:15 GMT

Dan wanted me to let you guys know that he has not been feeling well recently. He is in the hospital recovering from pneumonia. He is hoping to be back home by the middle of this week.

He sends his best, and is anxious to get back to work!

Rob

Mental Illness...Here take this assessment!

Trish-411 — Wed, 30 Sep 2009 14:23:35 GMT

Dan,

What do you think about those self-assessment mental health surveys? I?m not talking about the stuff on Facebook but stuff from more legitimate sources like a mental health website, a brochure that you might find in your doctor?s office or maybe one passed out from your wellness center at work. Do you see any value in these types of tools? Do they really tell you anything about yourself?

Even when you are trying to fill them out honestly, it isn?t easy. Do you feel hopeless? Sure some of the time, doesn?t everyone? How often? Every day, half of the days, occasionally? Who knows how to answer that?some days I feel hopeless only in the morning when the dog has pooped under the piano, the kids are late for school, I?m having a bad hair day, I only got 3 hours of sleep and oh yeah?I remember that my husband is paralyzed. That happens a lot, but am I hopeless all day long, probably not. Do you think you would be better off dead? Sure some of the time, doesn?t everyone? When you are in a constant battle with insurance companies, doctors, lawyers, in-laws yeah some days I wish I was dead. Are you having trouble sleeping? Yes, every single night but maybe that is because of some of the caregiving duties I have throughout the night. I really have a hard time even making a realistic self assessment. Maybe I over think the questions.

So I know you?re thinking, then why would you even take such a survey. Good question. Sometimes we are forced into such things. Let?s just say something like a ?healthy lifestyle? insurance premium requires that you don?t smoke, you wear your seatbelts, have your bp checked at the wellness center yearly, submit to a Chem24 & CBC yearly (wanna see my big bruise) just to mention a few things. You get my drift?.sort of Big Brotheresque I know, but sometimes you do what you gotta do to stay in compliance. I?m just hoping I don?t get reported to EAP. Any thoughts? Not about EAP...I was joking there but about these assessments.

Text Me, Email Me, FaceBook Me

Trish-411 — Thu, 12 Nov 2009 16:29:26 GMT

I?m starting to wonder if technology is replacing normal human interaction. I had an interesting experience this week. On Wednesday night at 11:30 p.m., I get a text message from my sister. Of course I?m not asleep yet, so I read it. It says ?You better look at Allie?s Facebook.? Allie is our niece. I?m not really a die hard FBer more a lurker and monitor of my own kid?s FB, but once you sign up people you know from everywhere suddenly materialize. I get up and logon the computer, and her FB says she is engaged. I text back, ?I have no idea what this means.? She has a serious boyfriend, but I had just talked to our brother that night, and he didn?t say a word about any engagement.

In the morning, I checked FB again. I see another niece (Allie?s cousin that is a senior in college) has now commented on the engagement. Well I can?t let this go without a comment of my own. So I make one. Then I email my brother and ask him what?s going on. In about an hour I get a phone call from my brother asking what the heck are you talking about? He has just looked at her FB and doesn?t see anything, but claims he?s on a Blackberry so he might be confused. He knows of no engagement but is going to get to work and check on his computer. In another hour he sends me an email with a screen shot of what he sees on her FB. Humm?he is seeing only a fraction of what I see. My sister, who started this whole mess with her midnight text, emails us both with a screen shot of what she sees which is the same as what I see. Apparently my niece has blocked her dad from viewing most of the ?good? stuff. I hate to have to break it to him, but it appears that the cat is already out of the bag. The entire morning is a flurry of emails trying to unravel her FB. Now she is back to ?in a serious relationship? and apparently her boyfriend added the engagement info to her FB. I still don?t know the whole story, but I?m pretty sure she isn?t engaged. It?s just another colossal hoax I suppose. I?m expecting to be blocked by her any day now. I think I?m going to feel a little hurt if I have to find out one of my nieces or nephews is engaged via FB. Is this the wave of the future?

Technology is great, and I certainly partake in most of it. It makes my husband?s life so much easier and allows him to communicate in ways I?m sure he couldn?t have 15 years ago. But I miss the face to face. I miss hearing a voice or looking at someone?s face and into their eyes to really understand what they are saying. Every time I hit the send button, I wonder if someone is going to misread, misunderstand, misconstrue, or inadvertently take offense to a crazy email of mine. It?s so easy to read the wrong tone into an email or FB post.

I remember growing up when you had to knock on someone?s door to talk to them. Or sit at the kitchen table and talk on the phone because your parent?s wouldn?t put a phone in your room. Or you had to actually pull into a gas station and fish a quarter out of the ashtray in your car and use a pay phone. Are we better off now because of all of our devices? Sometimes yes, but maybe sometimes no. I miss the touchy feely of a real live conversation. Maybe others don?t mind it so much, but with having a C3-C4 husband maybe I?m just starved for some touchy feely.

Hi Dr. Dan From a quad of 34 years

WadeStinson — Tue, 20 Oct 2009 12:35:11 GMT

Hi Dr. Dan,

My name is Wade Stinson in Troy, Alabama. I have been a quadriplegic for 34 years after a diving accident at seventeen years of age. I have just completed my autobiography recounting my life---accident, recovery, and adjustments living as a quadriplegic. I was an English teacher and identified with the tragedies too often associated with the results of reckless youth. One of the objectives of my book is to warn both young and old of the consequences of careless and misguided acts.

I would appreciate it if you would consider mentioning my book. The title is, BETWEEN GRIEF AND NOTHING by Wade Stinson and it is available at amazon.com barnesandnoble.com and my personal website http://betweengriefandnothing.com

I apologize for the bother but I believe I have accomplished a worthy attempt at portraying the emotional and physical dilemma of paralysis along with the process of adjustment and productive living as a paralysis victim.

Thank you,

Wade Stinson

724 C.R.204

Troy, Al. 36079

phone 334-897-5698

A book about being a quadriplegic

janiegolfs — Fri, 09 Oct 2009 08:18:40 GMT

Dear Dr. Gottlieb- a good friend has written her story. She has been paralyzed for ten years after a shooting and was not expected to live more than a few days. It is a moving story and she is looking for help in how to possibly get it published. Any ideas?

Thanks,
Jane