On Healing

Dr. Dan has been under the weather

gerthro — Mon, 16 Nov 2009 13:47:15 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

Text Me, Email Me, FaceBook Me

Trish-411 — Sat, 14 Nov 2009 00:29:25 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.

Abilities Expo 2009-2010

ratherbflyin — Tue, 10 Nov 2009 09:26:49 GMT

I was fortunate enough to attend the Abilities Expo this weekend in Atlanta. It was wonderful and so packed with information and ideas! Best of all, the Expos are free of charge for anyone wanting to attend. There were families in attendance and individuals also.

There are four Abilities Expos planned in 2010 in Los Angeles, New York Metro in NJ, Chicagoland in Schaumburg, and Houston. The Christopher and Dana Reeve Foundation had a exhibitor's booth in Atlanta.

There were workshops, performance events, and professional continuing education programs with free CEs.

It was an opportunity to meet other people with and without disabilities, to network, and even try new equipment or technology.

Go to: ' www.abilitiesexpo.com' to check it out! It's worth your time.

Mental Illness...Here take this assessment!

Trish-411 — Thu, 01 Oct 2009 21:23:34 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.

Questions for Dr. Dan - Puzzle Pieces

ratherbflyin — Tue, 24 Mar 2009 08:13:36 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

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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

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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.

Hi Dr. Dan From a quad of 34 years

WadeStinson — Wed, 21 Oct 2009 19:35:10 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 15:18:40 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

Leg Spasms Getting Worse

myscott1959 — Sat, 03 Oct 2009 04:47:49 GMT

This December 7th, 2009 my son will then be paralyzed 2 years from an auto accident. He
is 23 years old now and paralyzed from T7 down. He takes Neurontin and Baclofen daily for the leg spasms and for the past month they have gotten so bad it keeps him awake at night and the spasms rock his entire body. Can anyone tell me if they have experienced this and what may be the cause. We are going to get him an appointment with a doctor soon. I'm very worried about this.
Mom

Us vs. Them

Trish-411 — Mon, 07 Sep 2009 23:58:08 GMT

Warning: Caregiving rant about to be served up.

I was really distressed this week reading a dialog on another disability site and then when my husband seemed to support the same mentality. YIKES! The dialog was started by a wife and mother of 2 whose husband suffered a C5-C6 SCI 9 months ago. She posted in a caregiving forum stating that she didn’t feel the same about her husband. She no longer felt like a wife or lover but a friend and caregiver. Although she stated that she still loved her husband, she wasn’t sure she could stay and she felt terribly guilty about her thoughts. Immediately she was jumped on by the SCI population. This particular scenario happens every single time a post like this comes up. It happened to me 2 years ago on this same site, and I stopped posting there as did many of the other caregivers. Here is a sampling of some of the comments she received.

"I appreciate caregivers as much as anyone but I do not believe an AB knows how it feels to be SCI."

"My empathy is with her husband. What does she expect anyone to say...you’re right honey, taking care of a gimp is horrible and you deserve more."

"Do him a favor and get your a** out of his life. He is the one who got hurt. Are you just sticking around until he gets the money? What a shallow woman you are."

"What is your disability, nurse?"

"Your job is to keep your family together and keep him healthy."

Over the last couple of weeks we have talked about a great longing to be understood; a need to be with your clan of sameness. As a caregivers, I sometimes feel like so many folks don’t think we need this or deserve support from one another. Comments like the ones above keep many caregivers silent. It always feels like us vs. them, even at home sometimes.

Here’s where my husband comes into all of this. I recently found out that I need surgery in the next few weeks. It is nearly impossible for me to be out of commission for even one day, but I need to do this in order to perhaps avoid major surgery down the road. So now I feel the whole burden is on me to get everyone taken care of so I can get this done. I asked one of my husband’s nurses if he would come that evening and take care of my husband and stay over night so at least I had my first night free of caregiving. Guess what, my husband told him we didn’t need him. I’m in total shock by my husband’s comments. I think my husband actually expects me to take care of him the day I have surgery. We have a nurse that day until 3:30 p.m. and that’s it. He said he would get one of his sister’s to come over and help later that night. Help is the operative word here. They basically need my help to help him since their skills with his needs are limited. Plus who is making dinner for him and the kids? Who is feeding him? Who’s doing the dishes? I must assume that he thinks it’s me.

His attitude toward this hurts me beyond belief. Am I not worthy enough to have surgery on myself? Is my health unimportant to him? I have spent the last 7 years of my life devoted to his health, and I don’t deserve one day for myself? That is how it feels. I’m not asking him to help me in any way that day or beyond. I’m just asking to have the right to not help him for maybe 1 or 2 days with his blessing. I believe that my husband subscribes to the comments made to our original lady; my job is to keep the family together and keep him healthy at all costs.

Does a disability relieve a spouse of their concern for their AB spouse? Should an AB spouse not seek medical care of her own since her husband is a whole lot worse off? Where does this attitude like my husband’s and the others quoted come from? Help me understand. My husband wasn’t at all like this 7 years ago. We were devoted to each other. Now what has happened? I’m about to cancel my surgery because I guess I’m not worthy in his eyes. I am, but logistically it looks impossible without his support. Us vs. them, but there is never a winner.

Caregiving

peace214 — Tue, 15 Sep 2009 20:28:08 GMT

Hi Dr. Dan. I am the "significant other" person in a relationship with a C5 quad 6 months post..

In the beginning, his son and mother were taking care of his affairs and I spent every day with him when I wasn't at work during the day and all day on Saturday and Sundays. I continue to act as his caregiver and companion - he's in a nursing home right now but has been in about 5 different facilities in the past 6 months. His son is a graduate student and doesn't have the time to take care of things and his mother is old and incompetent. We (him and I) have decided that I will be the contact person to take care of everything as far as his care is concerned. His mother has the "I'm his mother" thing going on and it's been very frustrating. My question is in regards to finances. I feel that he would trust me with the finances but I also feel that he doesn't want to hurt his Mom's feelings by taking that away from her. It's very annoying to me to have to ask for a check when there's something that needs to be paid. We have just started this arrangement in the past few weeks and I'm already uncomfortable with the finances. I have tried to look at the fact that maybe I'm being a control freak - but to me it just makes sense. I'm with him everyday except the two days a week that she is there and I'm taking care of everything else except the finances. I want to make sure things are taken care of, and it's also a point of him and I being together in this....I've already lost so much by losing him to this injury. Long story short - we started dating in 2003, married in 2004, divorced in 2006 but have been seeing each other the entire time except for short periods here and there. In all regards except legally, I am his wife - but we use "significant other" instead of trying to explain....people get confused because our last name is the same but we're not husband/wife. Anyways, would I be wrong to say that it's time for us to take care of everything together, including finances?

mindful meditation

kabhwb — Tue, 08 Sep 2009 18:55:39 GMT

Hello Doctor G,

I am an avid listener to your program on WHYY. Yor insights and wisdom have helped me through many difficult days. Thank you very, very much. I wanted to learn about using mindful meditation for the chronic pain I have (post MVA 2006 ). I live in Wilmington, DE. Where can I go to learn the actual technique of mindful meditation as well as how to employ it.

Thanks Again,

Kirk

What fosters emotional growth and what prevents it

Dan Gottlieb — Tue, 11 Aug 2009 19:37:37 GMT

As many of you know, my recent Web chat was with Carla from these pages on the topic of posttraumatic growth. The research shows that the majority of people who endured trauma had life enhancing experiences including increased compassion, respect for life, new dimensions of faith, realigned priorities and a sense of purpose in life.

Of course these positive experiences don't happen right away and sometimes take years (it did for me) and not everyone who experienced trauma has this experience.

I told the story in letters to Sam about what happened many years ago when I developed a pretty large decubitus ulcer. When he examined me, the doctor told me that ultimately everything the ulcer needed for healing was already in my body. So all we had to do was access what was already in there and create an environment where that could happen. Medically, that's pretty simple -- keep the pressure off, keep the wound clean etc..

But what about trauma? What is it that helps us husband our internal resources so that we can grow, and what is it that inhibits the growth? I would like to begin a dialogue on this very question and I would like to hear from you about your experiences with what keeps you stuck and what has help you grow to become bigger than your trauma.

I'll start. When the body is traumatized it goes into shock. This is healthy and adaptive as systems shut down and don't make demands. Same with the mind. We have all experienced shock where we shut down. It's not quite depression, not quite confusion and not quite numbness but a combination of all three. Shock helps us keep the bigger emotions of terror and despair and later rage at bay for now. But keeping those emotions at bay over time inhibits healing. It stops our body/mind from getting the nutrients it needs to heal. Just like self-absorption is essential in the short run after trauma. After all, we must focus on our wounded selves in order to care for the mechanics of what we need. But self-absorption in the long run makes our worlds very small and conducive to depression or worse -- self-pity.

And what enhances personal growth? Finding meaning, finding support and nurturing, making the lens of your worldview wider, caring for others, laughing frequently (seriously), faith (we can talk about that later) and the big one... love. Lots of love. And it doesn't matter whether you are being loved or loving others. Personally I think loving others is just a tiny bit better, but I like them both a lot.

I also spoke on the Web chat today about the importance of properly placed hopelessness. So many of us get stuck because we clutch to a past that somehow think we can reclaim or grasp at a future vision that we think will make us happy. If we had no hope for either of those, it opens the door for lots of possibilities.

But like I said -- let's talk

A New Kind of Therapy

Trish-411 — Mon, 03 Aug 2009 20:26:27 GMT

Dan,

I think I have discovered a new form of therapy. After my week of trying to manage an unmanageable health care system, I thought I needed something.

We have a broken hospital bed currently being held up by a car jack awaiting repair…who knows how long that will take. We have a denied medication for the third year in a row that requires an appeal on our part which I know will be successful because it has for the last 2 years. It’s just the hassle of doing it over and over again. And finally we have a doctor’s office that had some sort of screw up and didn’t mange to have the proper blood tests ordered on the 10 tubes of blood my husband had drawn 3 weeks ago, and we are just now finding out. Yet another set of typical weekly issues which drive me nuts. Everyday I think that there is something very wrong with our health care system, but I just can’t envision how it can be fixed. Maybe if a member of congress actually came to my house and slept on a bed being held up by a car jack maybe then they could pull themselves out of the quagmire that prevents them from getting anything done.

So this week I found a new kind of therapy. It’s called jigsaw puzzle therapy. My son received a puzzle as a gift this week, so we dumped it out on the dining room table and got to work. I have found it to be quite a relaxing activity. There is this calming feeling of turning chaos into order. There is a spirit of working together and actually accomplishing something and a sort of exhilaration when finding that elusive piece that completes your assigned area. The boys and I have spent several late night hours just chatting and puzzling. I know it seems simple, but it feels therapeutic. When there is no chance to order your life or the health care system you find yourself in, then I highly recommend a jigsaw puzzle. Unfortunately since my husband has no hand function that leaves him still banging his head against the brick wall. I’m on head banging hiatus this week because the puzzle is still not complete.

This puzzle is only 500 pieces so maybe if things get worse we can graduate to 1000 pieces. But this one has a secret glow in the dark picture yet to be revealed. Oh boy I can hardly wait. See our progress so far.

Broken Wheelchair Chargers = Panic Attack

Trish-411 — Thu, 09 Jul 2009 02:47:04 GMT

Dan,

Reading your experience with your battery charger can almost send me into a panic attack. I’m glad it all worked out for you, but I can’t help but wonder what I would have done. Panic attack probably. It seems odd that I would react this way because I have legs that work so what’s the big deal. I’m not the one going to be stuck in a chair that won’t go. I guess the problem is that I am the one that is required to solve every problem that arises. Maybe it is what you have said. I feel utterly alone in trying to solve everything there is about my husband’s SCI.

I am beginning to wonder if we have a sort of drug addict/enabler relationship. My husband is not required to deal with anything. If a charger blows, it is my job to figure out a solution. He sits back and says…”Trish, what are you going to do?” It has been this way since day 1 of the accident which will be 7 years on July 14^th. I made all the rehab decisions because he was unable. I handled all the legal issues. I hired a contractor and had our house remodeled. I hired caregivers. I was/am his primary caregiver. I found his doctors, his DME suppliers, got his supplies, his prescriptions and everything else that was required. At some point I wanted him to reclaim his life in this respect, but that has never fully happened and maybe I don’t really allow it. If he doesn’t do something that is required, I immediately swoop in and make it happen because I worry something serious will result if I don’t.

Just like today; he was going to a new doctor. He screwed around all day yesterday playing on the computer, reading, watching movies while I worked at my “away job” and then came home and did my at home job plus put a coat of paint on the walls of my son’s room. After I get him to bed, he has the nerve to ask me to type up a medication list for him and a summary of his hematology issues over the past 7 years for this new doctor. OK, it’s his body, his SCI, but he thinks I am better able and more knowledgeable to put this information together.

Well, I was a little pissed, a little tired, but I did it because I wanted the doctor to have the correct information. I do this stuff constantly. Am I his enabler? Does he not take more responsibility because I have done this for the last 7 years? I want to stop. I want him to take care of the things he can, but he never does so there I am doing it.

Talk about feeling alone. I feel like I am the only one worrying about all of this stuff. Even he doesn’t because he has let it go and turned it over to me without another thought.

When we were kids growing up, I saw how my mom made my dad so helpless. To this day he can’t (or won’t) even make a sandwich for himself because he is so used to my mom doing everything for him. He is a capable, smart, driven man and worked so hard and provided so well for our family. He owned and ran a large manufacturing company until he was nearly 70, but he can’t use a microwave, a washer, a stove, a dishwasher, or a trash can for that matter. I bet he has only been in a grocery store maybe 5 times in his adult life. Except for the fact that he can walk and use his arms, he is nearly as paralyzed as my husband.

I think I might be turning into my mom. Maybe I have made my husband this dependant, but how do you change things now?

On the Road with Dr. Gottlieb: Israel

gerthro — Mon, 22 Jun 2009 14:56:54 GMT

The good doctor is up for another adventure. (Having just gotten back from Taiwan.)
Stay tuned to this space. His next trip starts this week.

Rob

PTSS?

Trish-411 — Tue, 14 Jul 2009 15:25:05 GMT

I know what you’re thinking, she has this too. Well no actually I think I gave it to my son’s hamster. Last week the kids were on vacation with friends, so I decided to redo one of their rooms. It was a big project, but I got it done with only one incident.

Here is what happened. My son has this hamster. I know…I hate the idea too. I thought I had eliminated all caged animals from my house. We have had other hamsters, hermit crabs, fish, frogs..too many to mention. After they died one by one, I said no more. Well my son cooked up the new hamster plan with his dad and his aunt. I warned that I was out of the hamster business. I won’t clean cages, feed the hamster, or even look at it for that matter. I’ll be sad if my son lets it die, but that will be on him. I have stuck to my word and miraculously the hamster has lived several months without my intervention.

Anyway, when I started painting I decided that I had better put the hamster in the guest room in case the paint fumes might kill him. I get him in there and close the door. A couple of days later in the evening I peak my head in to check on him. He’s fine. He either sleeps or is running on the wheel to nowhere. OK now I’m back to painting. A couple of hours later I hear this big crash sound. Humm…paralyzed husband, no kids, that’s odd, but we do have 2 dogs and a cat so maybe not so odd. I yell downstairs to my husband…did you hear that, is anything wrong down there. Nope he says everything is fine. Perfect, back to painting. A bit later, I wrap things up so I can get him into bed for the night.

It’s about 10:15, and I think I’m done for the day. I’m lying in bed and realize that someone is missing. Hey, have you seen the cat lately? Nope….OMG. I run upstairs and open the guest room door to find a dismantled hamster cage and a cat sitting right next to it. Oh no, I’m figuring the dead hamster must be somewhere but where I can’t find it. I have to drag the cat from the room. I run downstairs and tell my husband of the hamster mess. My immediate plan is the “look-a-like” plan. I’ll make my husband go out with his nurse the next day and buy a new hamster that looks like the old hamster. Good plan right? Maybe our son won’t notice. Back up to the guest room to find the dead hamster. Humm…. I look and look, can’t find it. Maybe it got away. Is that possible?

Plan 2, try to catch the hamster on the off chance that it managed to escape the wrath of the cat. Here is my plan. I reassemble the cage and leave the door open. I get a couple of little carrots and set one outside the cage and the other inside with the rest of the food. I close the bedroom door and pray for the best.

Hot damn, it’s my lucky day. The next morning I actually find the hamster back in its cage. What a relief. The problem is the thing seems rather traumatized. Instead of running on the wheel, he is just standing there on the wheel. PTSS maybe! He is like that all day long. I’m just hoping that he will snap out of it. Well by the time my son gets home on the weekend the hamster seems back to normal. Disater averted this time. In this process I have learned several lessons:

1. I have the lamest cat in the nation. He can’t even catch a caged hamster.

2. I have the smartest hamster in the nation. He managed to survive several hours locked in a room with a cat and find his way back to his cage overnight.

3. I still hate caged animals.

4. There is never a dull moment in my house.

5. And even in the hamster world, I guess what Dorothy said is true. “There’s no place like home.”

Cell Phones and SCI

ratherbflyin — Sun, 05 Jul 2009 22:03:15 GMT

Curious to know if anyone else in the community was injured because of cell phone use? My SCI was directly related to cell phone use by the guy who hit me. He was speeding and making multiple phone calls just before impact and claimed that he didn't see me, which was supported by the fact that he made no attempt to brake or slow down. I wonder how long it will be before data regarding cell phone use will be collected routinely as part of accident investigations?

On the Road with Dr. Gottlieb: Taiwan

Trish-411 — Tue, 12 May 2009 23:43:50 GMT

Dear Dan,

Well frankly I don’t have any. As everyone now knows we haven’t left our city in almost 7 years. But I did want to congratulate you on your award. You totally deserve it. I wish I could give you an award for your online services which you can see I freely take advantage of. You are a gift to our community.

Now here’s your tip. Many years ago I worked for a Taiwanese boss, Dr. Wu. He was a brilliant researcher and chemist, but his broken English was the pits. I remember his first day with our group; he wanted us all to go to lunch. So off we go, Dr. Wu and his 4 scientists. He starts telling us these stories about Taiwan. Something about men having a city wife and country wife; it was difficult to follow. Anyway, he then goes into this story about his mother-in-law and a trip they were on. He keeps saying it all happened at Mamo Kay. We’re like where? Again Mamo Kay. Now we are stumped. What is this guy talking about? I’m figuring it must be some place in Asia that I have never heard of, but he insists that we all must know about this place. Well finally after 10 minutes of a charade like game, we figured out that his trip was to Mammoth Cave in Kentucky.

Ok now I am worried. How am I going to work for this man when I can barely understand him? He had previously been the head of an R&D group, and I remember going to some of his presentations and being in a brain fog moments after he began speaking and now I’m working for him. Well within months, my English-wanese ability soured. I understood almost everything he said. I would tell myself, wow Dr. Wu is really coming around (although that seemed a little weird since he had been in the States for over 20 years). Anyway, a few months later, we went to a seminar where he was presenting. I thought it went very well. I understood it perfectly, followed along, and thought he did a fine job. When I got back to my desk my phone started ringing. People from the seminar were calling asking me what in the world had they just heard. It was then that I realized that Dr. Wu hadn’t been improving his English, but rather I was now fluent in English-wanese. This became the norm for the 5 years I worked for him. We fielded translation calls after every presentation he did.

So what’s the tip you ask? If on your trip you hear soemone say they visited Mamo Kay, they have been to Kentucky.

Hope you have a great time.

Is this normal?

Trish-411 — Tue, 09 Jun 2009 23:07:23 GMT

Dan,

Your incident of peeing your shoe cracked me up. Believe me if I had been there, it surely would have sent me into a frenzy but since it was you, I found myself a little cracked-up. By the way, my husband has peed his shoe many a time too, but typically I can only blame myself because I have left the leg bag improperly secured.

Sometimes I crack myself up feeling like what I call a poser. Poser, meaning posing like a normal person; posing like a normal wife and mother. I remember one day when I stepped out of bed and slipped and fell on 2L of my husband’s urine that had drained on the floor all night. My jammies are soaked in pee, and I have a big clean up on my hands. However, I manage the clean up of both the floor and myself and even make it to work on time.

I have also gone to work when just a mere hour before I was cleaning up a code brown in my husband’s bed. Or literally I have been on my way out the door and given my husband a quad cough only to have him cough up a big lougie into my hair.

I arrive at work thinking if these people only knew what I had been doing this morning. I wonder what my work colleagues would think of me if they knew I had rolled around it in husband’s urine just an hour ago. Work is where I feel the most normal. Most people have no idea of our circumstances. I never talk about it; only if someone approaches me and specifically asks something. I have a couple of very good friends at work that I have known for over 15 years, and they hear all the stories. But they are the only ones that have any idea.

After a disastrous SCI morning, I plop down in my desk chair at work and almost snicker out loud. If people only knew. I can only think, OMG I’m posing like a normal person and nobody realizes it.

Is it normal to pretend to be normal? Shoot, maybe I am normal and just don’t know it. Maybe some of the people I work with are posers too. Maybe nobody is really normal. I dream of being just normal again and not a poser.

My Personal Nightmare

Quad In 98 — Tue, 26 May 2009 22:17:28 GMT

I've been paralyzed since 1998. My injury level is c4-c5 complete with some arm movement but unable to grasp and unable to move fingers. I can't feel anything from my upper chest and on down. I write this because I feel as if I can't and don't want to keep on living like this. I was in a car crash; I was a passenger and only 23 years old at the time. My boyfriend was the driver. When I awoke out of an induced coma 9 days after I was told Ray, my boyfriend, had passed. Ray had some sort of head trauma. God I miss him. I don't recall how the crash occurred or if we were wearing our seatbelts. I wasn't able to kiss, hug and caress Ray goodbye. I think about him all the time. Would we still be together? Would we be married with a family?

Life has been cruel. This paralysis makes you depressed and most of all it humbles and humiliates you. The inability to do things for yourself. Your independence snatched from you whether you want to give it up or not.

It has been so long since I've felt the touch of a man. The love of someone who truly does care and respects you. I know my family loves me but the love I'm writing about doesn't come from my mother or my niece, sister or brother that love would be a crime. The love I write about is the love that looks at you and you feel invincible as if you can leap up in the air and touch the moon. The love where your heart is beating 5 miles a second without causing a heart attack. Lately I have been wearing his cologne because is getting harder to see his face. I feel like I'm never going to see him again. It hurts to know. It hurts to be here alive alone especially at night. No cuddles, no goodnight kisses, no warm body next to mine.

It's been 11 years this August and every single second feels like an eternity. I pray to God every day and night that He grants me my prayer, my prayer to die. For God to take my life because I don't have the strength to do it myself. I believe in God, in heaven and hell and believe if I were to take my life I would go to hell to burn in eternity. I'm writing this and I'm holding back tears. Tonight I'll let them out. I don't want to cry now 'cause mom's around.

Introduce Myself

CompCreaCom — Tue, 02 Jun 2009 00:57:54 GMT

I would like to offer a

support to anyone who can use it. I believed the cure

is here. My Hope is high in time is promising.

Cecilia

compass ????

lakewithab376 — Wed, 20 May 2009 05:43:41 GMT

Hello Dr. Dan, I am 33 and T-12 paraplegic as of 12/07.Since you have certainly amassed a great deal of "war stories" I wanted to pose a question if it is not too imposing. If given a choice what is the one defining factor you credit to your resillience? I ask because in spite of my strong support from my wife , father and deep devotion to music (12 srting guitar) , plus "Pure Land" Buddhism I still have a huge void that swallows me frequently. Do not expect a "silver bullet", just some perspective please. Thank you, lakewithab376

SCI steals and robs from all

Trish-411 — Thu, 16 Apr 2009 23:51:49 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.

Expectations

ratherbflyin — Sat, 14 Mar 2009 08:20:11 GMT

Friday, March 13, 2009

"Do not depend on the hope of results. You may have to face the fact that your work will be apparently worthless and even achieve no result at all, if not perhaps results opposite to what you expect. As you get used to this idea, you start more and more to concentrate not on the results, but on the value, the rightness, the truth of the work itself. You gradually struggle less and less for an idea and more and more for specific people. In the end, it is the reality of personal relationship that saves everything." -Thomas Merton
--------------

Friday the 13th. Tricadecaphobia for many, but not me. I'm remembering the children's story about the wolf and the grapes. The wolf is under a tree with grapes hanging just out of reach, after trying to get the grapes by jumping and jumping. He imagined how sweet and juicy they would taste. After trying as hard as he could, the grapes remained out of reach.

I'm sitting at home in my wheelchair, looking out the window at my newly delivered SUV. It's too rainy to try to open the door and really have a good look inside, so I am just examining it through the raindrops and reminding myself that I can't drive it right now anyway (it needs two more conversions to be fully accessible for me)...just like the wolf told himself that the grapes were probably sour and bitter when he could not find a way to reach them.

Seeing my long-awaited SUV parked in my specially marked space is also a concrete symbol of disability and, even though I look forward to more freedom to come and go as I please, it's another silly, unexpected, and sneaky innoculation of reality! Frustrating that an event that I have been anticipating for three years is a mixed bag of meaning. Perhaps, when the rain stops and I can inspect it thoroughly, my excitement will return.

Thomas Merton's quotation above is very loosely connected to this post, expectation of a particular reaction or result interferes with the freedom to simply accept experiences as they are. Today is just another cloudy, rainy day in the South and the SUV in the drive is just an SUV...

Transition from "Rehabing" to Living - Continuing Journey

ratherbflyin — Sat, 28 Mar 2009 23:47:06 GMT

Come to the Edge

by Guillaume Apollinaire (French Poet)

"Come to the edge, he said.

They said: We are afraid.

Come to the edge, he said.

They came.

He pushed them and they flew."

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

Transition process continues. It is still difficult to figure out a routine in the midst of continuing change. I'm glad to be driving again, however, I wasn't prepared for how tiring it is. Is there ANYTHING that doesn't sap energy? I know I'm much stronger, so perhaps endurance will improve with practice. This poem describes another way to see this phase of healing as a leap of faith toward acceptance rather than trying to climb out of a pit. Hmmm...worth consideration.