On Healing

Re: Questions for Dr. Dan - Puzzle Pieces

Dan Gottlieb — Tue, 03 Nov 2009 20:32:05 GMT

I missed last week because I was terribly ill with the chest cold and fever. Like the rest of my fellow quadriplegics, I can't cough. Not in any respectable way. And it is worse when I am in bed. So I was pretty sick Monday and Tuesday. And also Wednesday and Thursday. Friday I felt a little better and fever broke. And then I felt sick Saturday and Sunday -- Monday night around six o'clock right before dinner, I went from frustration right through depression to despair. I told a friend that I couldn't do this anymore, this busy career, this caring for friends and relatives (even my daughter who is having a difficult time).

I know what Gottlieb would say, I've been listening to his blather for years. He would say "stop fighting with this moment, it will change on its will, not yours." But what happens when the moment we are in just bites? Psychobabble doesn't work and, frankly, sometimes Gottlieb gets on my nerves.

So I was in bed by 630 last night. No more e-mail, telephone calls or other forms of communication. Done. And some light reading until the Phillies game.

I woke up today just as sick as yesterday and I had to give a 90 minute lecture. I've been coughing all day and coughed my way through the lecture. But no more despair. I am tired and frustrated, but to despair left. For now.

I forgot one of the things Gottlieb says it makes sense:

when you find yourself in hell, go find the bus stop and sit down and wait. Just like any other time we wait for the bus, it could be cold or rainy, we could have an appointment we are late for -- none of that matters because the bus comes when it comes and it always comes.

And that is important to remember because if we find ourselves feeling great, the bus is coming there also.

Re: Questions for Dr. Dan - Puzzle Pieces

ratherbflyin — Tue, 20 Oct 2009 21:26:53 GMT

I know. For someone who thought she had become patient, this is quite revealing of my impatience. Thank you for hammering into my thick skull that mind & body will eventually meet in a new & different place. I appreciate your insight.

Re: Questions for Dr. Dan - Puzzle Pieces

Dan Gottlieb — Tue, 20 Oct 2009 19:56:26 GMT

Phantom pain is pretty severe I am told. It's not psychological, it's neurological I am told. It's almost as though the body doesn't know the limb is gone and the pain is right where the limb used to be.
I think all pain is where yesterday used to be. When you could do your chores quickly and independently, when you didn't have to think about a thousand details in your life, you know -- yesterday.
In your brain and your mind are saying "what the hell is going on here, this isn't right." So you get frustrated because your mind/brain still thinks it's supposed to be the same as it was "yesterday".

Your brain will catch up with your body and then today's life will become your life. And when that happens, you won't be frustrated about how long it takes to do your chores. And then you will have room in your brain to be frustrated about all sorts of other things!

dg

Re: Questions for Dr. Dan - Puzzle Pieces

ratherbflyin — Wed, 14 Oct 2009 03:36:22 GMT

I, too, have and do spend time "out of my mind" meditating and observing thoughts as they float by. Thoughts just are.

Those that are non-productive or negative might be a by-product of a broken, tired, and sore body trying its best to keep up with all of the tasks required for day to day living...activities that were challenging to manage with an active nursing practice, a teenager still at home, and an able body.

On errand or "task" days, it is sometimes difficult for me to reach a meditative state that allows me to observe and not identify with my thoughts. As I was trying to do just that one day last week, I awakened to find myself sitting upright in a modified yoga pose on my exercise table.

Now, for a tetraplegic, in spite of her periodic lapse in meditative detachment from negative and non-productive thoughts, THAT is finding BALANCE in one's life. (LOL) ;-)

Re: Questions for Dr. Dan - Puzzle Pieces

Dan Gottlieb — Tue, 13 Oct 2009 19:26:33 GMT

You humans much too much attention to your minds, and you have way too much respect for what is going on up there. It's mostly just chatter, false predictions about the future which make you anxious which make you have more false predictions about the future. And when your mind is not doing that, you are probably thinking about how you can change your history, or at least change what is now to what was then. Sometimes I think the opposite of the slogan for the United Negro College fund: "the mind is a terrible thing to waste." Sometimes I think the mind is a terrible thing to have! At least sometimes.
So here is your body saying "I can't do that" and your mind is saying "you should do that, you could do that, after all, you used to do that." And you get frustrated because of your mind.
In one of my newspaper columns I compared the mind to a poorly functioning kidney. Kidneys filter, minds don't. I guess that's because kidneys don't have egos.
Your body needs care. Your mind needs understanding and compassion, but it is behaving like a scared petulant child. Please treat it as so.
Personally, I worked very hard in my meditation practice to spend as much time as possible out of my mind. And many of my friends tell me I'm doing a pretty good job.
Humans!

Re: Questions for Dr. Dan - Puzzle Pieces

ratherbflyin — Tue, 06 Oct 2009 20:48:10 GMT

Good points, thank you. My heart knows what you are saying is true, however, my mind is not yet giving me a break. I know this will improve over time. I've always been an observer and frequently an outsider, however, I could always do so incognito...not true now.

Re: Questions for Dr. Dan - Puzzle Pieces

Dan Gottlieb — Tue, 06 Oct 2009 19:24:22 GMT

Couple of thoughts (what's new!). First, seasonal affective disorder has many forms the onset varies depending on the person and the location. So it might be worth trying to wear a silly hat with lights on it for a half hour a day like I do. I still don't know if it works, but it's kind of fun to wear a silly hat once a day, I think that alone can be an antidepressant.

But the bigger picture about what you are describing is the relationship between your body and your mind. They just haven't caught up with one another yet. Your mind doesn't fully know that your body no longer functions like it used to. That happens to all of us and it can be frustrating. But if we can find little compassion, it all boils down to a confused mind that needs more time to understand what is happening. So we screw up, miss appointments and apologize to people for being late.
Keep in mind the definition of stress is when you want the moment you are in to be different. Of course, the moment you are in is always that moment and can never be different so stress is about trying to change what cannot be changed. Your body is your body, your mind is your mind and your spirit is also uniquely yours.

And the third in my couple of thoughts is about your relationship with the larger, fast-moving, ADHD, instant gratification larger culture. This is also a mind/brain thing. Before we were injured, we had the delusion that we were one of them. And if we didn't have the delusion that we were one of them, we thought we should be one of them. Well part of your brain still thinks that. This is the best news of all about being disabled. We can no longer be one of them which makes us much more normal and perhaps feeling more different. Time goes more slowly, we notice more, experience more feel more.
Frustrating at first, but this has been a precious gift from me this ability to sit simply watch.

Re: Questions for Dr. Dan - Puzzle Pieces

ratherbflyin — Wed, 30 Sep 2009 04:47:58 GMT

Dan,
I read your article with interest. I wonder if the onset timing is later in the South for SAD? Cloudy days have a similar impact for me. Sleep has always been an issue and is a good indicator of a potential valley. We have experienced almost two weeks of rainy, cloudy weather (spinoff of tropical storms), however the last two days have been gorgeous. I've slipped into a wierd every other day sleeping pattern for now.

I admire your ability to put yourself out there and express your vulernability. That is still very difficult for me. I have a history of being the strong one in our family. In fact, that's the meaning of my name. I am working on this issue , as incongruent as it is with my self concept. I remind myself frequently that accepting an offer of help or asking for help is a gift not only for me, but one that someone else is wanting to share.

Today has been a productive and frustrating day. I still am not great at predicting the amount of time tasks will take. I left home around nine this morning to run errands that I put off while it has been so rainy. I didn't arrive back home until after 4PM. Errands accomplished. I am acutely aware that I make a mental note of how I could have completed these same errands in three hours or less in my former life. I believe this struggle will lessen over time and with practice, reminding myself that this is now and the past was then.

Does anyone else have difficulty fitting unpredictability of body cooperation into a society that is so time driven? Time constraints create stress for me regardless of how much advanced preparation I have made. Frustration awakens a conflict between unpredictability and deciding what to do with the rest of my life.

Time will tell...

Re: Questions for Dr. Dan - Puzzle Pieces

Dan Gottlieb — Tue, 29 Sep 2009 19:49:22 GMT

My Inquirer column this past Monday was a description of my Seasonal Affective Disorder. www.philly.com/inquirer/magazine/62303347.html

It was difficult to write because of the self-disclosure involved. I told my readers (and whatever of my patients who read the column) that I had this depression and that it affected my self confidence. It was a little scary because my mind is what people value (for some reason, my remarkable good looks and sensuality get overlooked). Of course you won't be surprised that the feedback I've received has been numerous, positive and filled with gratitude.

I've learned this lesson over the years that vulnerability is inevitable and it is something we all live with. But I have also learned that pretending to be strong when we feel weak can sometimes help us get through a difficult day, and that can be a good thing. But if we make pretending part of our personality, it can be exhausting and put a barrier between us and our lives.

I once learned that being strong meant to be independent. Now I know that being strong means having the courage to look someone in the eye and say "please help me."

Love to hear from you about opening up to our vulnerability or any other issues you struggle with.

Dan

Re: Questions for Dr. Dan - Puzzle Pieces

Dan Gottlieb — Tue, 08 Sep 2009 19:53:58 GMT

Years ago I counseled a woman who felt very alone in the world. She said: "I feel like my soul is a prism and everyone I know only sees one color, but no one sees the prism." I thought about what she said and have repeated that story many times telling clients and audiences at my lectures that if they want to be a good spouse/lover/friend/parent they must see the prism of the other person's soul.
But then I thought about it over the years and realized no one can really that prism. It is ours and really knowable. And the best we can do is to simply no that it is there in ourselves and everyone else.

A colleague once said that the Divine Child is always an orphan. Many people don't experience their orphanhood and many feel it very acutely. If you think about it, and you are able to understand about the prism of peoples souls, you might find yourself in the middle of an orphanage of kindred spirits.

Re: Questions for Dr. Dan - Puzzle Pieces

ratherbflyin — Wed, 02 Sep 2009 10:36:29 GMT

Dan,
LOL...now, that was funny! So doing dishes it will be!

You’re right about the longing for sameness. I’ve always preferred to be able to simply blend in, but have yet to find a stealth wheelchair that allows me to do so. I read a book this past year entitled The Same Kind of Different As Me by Ron Hall, Denver Moore, and Lynn Vincent. The title of the book captured my attention and curiosity. I wondered what kind of “different” the story was about and, I suppose, touched on the need for belonging that explains the success of online forums such as this one.

It seems that I happen upon information that is most helpful when talking with people who have faced similar challenges. Today, I spoke with the vendor that I bought my wheelchair from and mentioned an upcoming trip that will be the longest trip I have driven since my accident. I commented that distance driving is so tiring. He has been a paraplegic for eighteen years and replied that long trips wear him out also and that he would probably stop midway for the night. His comment was affirming to me that my fatigue is not unique. I was surprised.

I appreciate feedback from those who have traveled this road and are willing to share what they have learned. It certainly makes the journey easier. Thank you for your replies to my posts.

-------------------------------------------------
"I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I --
I took the one less traveled by,
And that has made all the difference."
-Robert Frost

Re: Questions for Dr. Dan - Puzzle Pieces

Dan Gottlieb — Tue, 01 Sep 2009 19:49:58 GMT

Dear ratherbflyin,
first of all I must say it is a little weird. I just spoke to you on another thread a few minutes ago. It's almost as though we are taking our conversation from the dining room to the kitchen. Thank goodness neither one of us has to negotiate who will clean the dishes.
Seriously though, I think you have nailed the great dilemma of being human. We are social animals. We are hardwired to belong to a clan and in order to belong, there is a pool for sameness. If we are the same, the animal part of our brain knows that we will be protected by the clan and vice versa. Just like our four-legged ancestors.

But unlike our four-legged ancestors, we are blessed and cursed with an ego. And because of that ego, we need to be unique and have our own identity. And in today's world, the needs of the ego are even more powerful. Not only do we need to be unique, we need to be better! That's what makes disability so frustrating and painful. My daughters dog has three legs, but he doesn't seem to mind. Everyone that sees him feel such great sadness and compassion (ego), but he just wants to play (no ego).

So here we are visibly impaired sitting in a world wheelchairs with our ventilators or spasms or whatever we have. Nobody knows about the catheters or the dysreflexia or pressure sores or... and even if they know the facts, they could never know the experience. And part of the reason for that is because we could never adequately give voice to the experience.

The ego is hurting because we no longer feel one of the clan and lord knows our older standards, we are certainly not better than anyone.

I firmly believe that if our egos were more quiet, we might just want to go out and play.

And if what I said is of value to you, then you are in charge of the dishes!

Dan

Re: Questions for Dr. Dan - Puzzle Pieces

ratherbflyin — Sun, 30 Aug 2009 00:58:11 GMT

When I read your post it brought to mind several thoughts. This gentleman voiced what many people know personally, that seemingly invisible disabilities are sometimes more difficult to deal with than the more obvious ones. For example, those suffering with chronic conditions such as asthma, diabetes, fibromyalgia, chronic fatigue syndrome, extremely chaotic or dysfunctional home situations, borderline mental retardation or brain injury, mental illness, and so on.

People do not understand. They cannot possibly know what life is like for that person and it's not their job to understand. This struggle is not unique to less visable disabilities, however.

All people, disabled or not, have struggles that others do not understand. For example, my friends do not really understand my energy limitations or what it's like to care for my uncooperative body. Sure, they can see that I have a disability, but what they see is not the totality of me.

My sister attended a special school for developmentally and mentally handicapped children. I remember seeing a girl at one of the school functions who appeared very "normal" (whatever that is!). When I talked with her she was a little slow with her responses, but not obviously retarded. I wondered what it must be like to be disabled enough to attend my sister's school while looking and acting like most other girls her age in regular public school - very similar to the struggle in your story.

The old saying about not judging a book by it's cover is applicable here. I know I would like for others to understand, but know they cannot possibly do so. The closest to understanding that I have experienced is talking with others with similar disabilities or extensive experience with persons having a spinal cord injury.

Isn't this struggle the struggle of all human beings? A longing for understanding on the journey to self acceptance?

Re: Questions for Dr. Dan - Puzzle Pieces

Dan Gottlieb — Tue, 25 Aug 2009 20:03:00 GMT

I recently saw a 49-year-old man for consultation who had cerebral palsy. He was overweight and walked into my office with the classic unsteady walk of someone with CP. So when he sat down on the sofa, he breathed a sigh of exhaustion telling me how hard he worked to get to that spot. Before we got started, I simply made that observation and invited him to just rest for a couple of minutes. And when he did, he began to cry.

He said he never talked about his disability does anyone. Although, from my perspective, he seemed minimally impaired other than his gate, it was still obvious he had a disability. When I asked him simply why he didn't talk about it, he hesitated for a second as though he didn't know. And then he started telling me his story: "my whole childhood my parents told me I was just like the other kids. I wasn't, but that's what they told me. They lied and I was their lie." Once he started telling me his story, he stopped crying and he seemed lost in the storytelling -- a story he must have told a thousands of times before.

So I asked him again why he didn't talk about it, I again there was that silence before he answered. And then he said angrily "because nobody would understand." He went on to talk some more about his isolation and anger. He told me he could cut someone down with a sentence or "a look". He said that sometimes he was afraid of all of the anger in there.

I commented that both things he just said were about fear. He was afraid no one would understand and he was afraid of his own anger. He paused for a minute and I said: "I think you are right. Nobody would understand. Nobody can understand." First he cried and then he sobbed because he had just been told that the nightmare he has been carrying his whole life was real. But something happened after that, he looked much more relaxed and engaged with me. And suddenly he was able to talk about what it was like to be him.

He told me that all of the anger protected him from such great fear and sadness. And ultimately, there was a great longing to be understood, something he never received from his parents. But in order to protect himself from further injury, he developed a cutting tongue and the ability to isolate himself.

Ultimately, now that he can give up the battle of wishing for a type of understanding he could never have, he no longer had to pretend he was someone he wasn't.

Who else can relate to that struggle?

Re: Questions for Dr. Dan - Puzzle Pieces

Dan Gottlieb — Tue, 04 Aug 2009 19:47:00 GMT

Dear Randi's friend,

so like you, I would love to find a person to love romantically. And like you, I would like to find sex and caring and all that stuff. And as long as we are one thing, I would also like to be able to make love like I did before the accident!

All worry is about the future. So you have painted a picture of special people loving relationships and making love and now you fear that you will not have that picture. A friend of mine had a traumatic childhood. And like you, she also had a picture of what she thought she needed. And she went through her life comparing her relationships, her children, her in-laws and everything to the picture she had in her head. When I look at her life objectively, it looks pretty good to me. Lots of people have loved her, she's had a good career and has wonderful children. But she is so disappointed in her life because nothing ever fit that picture. The problem wasn't her life, it was the picture.

I live with longing also. We all do. It's not a call to action and it's not a need we cannot live without, it's simply a longing for something we don't have at this moment. But there is another moment coming right around the corner and it could be Heaven, could be hell or, most likely, something in the middle.

I wish your dreams would come true and I wish you were no longer afraid of you nightmare. And most of all, I wish you happiness.