living the life we have

living the life we have

Posted by Dan Gottlieb on Sep 18, 2013 10:06 am

Living the life we have

I would guess that everyone in this discussion is not living the life they expected or planned for. And everyone is living a life that involves great adversity, to say the least.
Most of us have gone through stages of wishing life could be what it was or what it could be or should be. And many of us live with regret, remorse, and that ongoing wish that we will have the life one day we think we deserve.

But until that happens-if that happens, how do we live the lives we have. Is it possible to live with these burdens with dignity and grace? Is it possible to live this difficult life with joy and gratitude?

When I first went to Al-Anon, I was in agony searching for ways to help my family member get through addiction. And one of their opening statements as a group included the phrase “we can be happy whether the alcoholic is tracking or not.” I heard that statement and thought it would make a lovely bumper sticker, but it’s impossible to do.

But is it? Can we enjoy our lives if a loved one has a disability? Can we live lives of gratitude if we suffer with pain or spasms or accidents or lack of resources?

My parents, when they were living, had a condo in a building that housed mostly older people. I became friendly with one of the older women who had terrible arthritis, which carried with it awful pain and difficulty getting around. Nevertheless, she wore bright colored dresses and always smiled.

Whereas another woman I knew also had arthritis and not nearly as severe as the woman above. She stayed in her apartment most of the day being very unhappy with her body, not to mention the rest of her life.

And finally my high school friends mother is still living in that building at the age of 91. She is quite hobbled with arthritis and walks on a walker. She has few visitors and spends much of her day in her apartment reading or watching television. She has a couple of friends in the building who might take her out for dinner or help her do grocery shopping. And yet, this is a woman who is at great peace. One day she said to me quite spontaneously: “you know Danny who would have guessed that at this point in my life I would be so comfortable inside my own skin.”

I’d like to hear about your life and what do you believe has to happen for you to be comfortable inside your own skin?

RE: living the life we have

Posted by Dan Gottlieb on Sep 25, 2013 11:48 am

My autonomic nervous system, I think has begun to unravel. The last several weeks my blood pressures have been unstable and have been fluctuating wildly. So, like most of us who survive this disability, I am pursuing all possible avenues to get this thing diagnosed and remediated. All of it feels so urgent and worrisome. And then I realized something…

I know me pretty well after these 6+ decades. And certainly since my accident, I know that when these things happen, they don’t have a long-term effect on my mood or my Outlook.

So even though this thing might not get better and might create yet another “new normal”, I have faith.

Faith that I will enjoy tomorrow’s life is much as I enjoyed yesterday’s. Faith that my love for others will not be diminished by my anxiety about my body. Faith that I will be able to enjoy the life of others with an open heart and deep gratitude.

I can’t control my body or what will happen to it. But life sure gets better when we have compassion for ourselves and faith in our own resilience

RE: living the life we have

Posted by Admin on Oct 1, 2013 12:58 pm

Dear Dan,

Are you taking Cymbalta ? this is very bad for blood pressure , my heart specialist told me so and after stopping it became much better , normal i would say ..

Hope it help .


RE: living the life we have

Posted by Cressi on Oct 1, 2013 5:43 pm

Hi Dr Dan,
I recently started melatonin for insomnia. Only occasionally. Well, I started having very very low pressures. The only new thing was the melatonin. So I watched my BP on the days that I took it and voila. I  am glad you shared the healthy attitude regardless of our circumstance.

RE: living the life we have

Posted by Cressi on Oct 1, 2013 6:04 pm

Dr Dan,
I must let go of expectations from people in my old life, before the rheumatoid disease and wheelchair.

Maybe the people, but surely their expectations. And, of people I meet in my shrunken world, that tendency I have to assume the worse of their intentions when they greet me with a smile and engage me in conversation.

My intense concentration on my vulnerability has heightened my suspicions of 'strangers'. But, to meet fine people like yourself, I know I cannot keep up this NYC subway mentality.

RE: living the life we have

Posted by KGN on Oct 6, 2013 5:25 am

Dear Dr Gottlieb, My brother, Danny, has severe problems with orthostatic hypotension. If I get him up too fast, or if he talks too fast or too much, or if he eats too fast or too much, we can simply be driving in the van, and having great conversations, and if he was talking too fast, he starts to \"white out\", as he calls it. He says that everything starts to turn really bright and then everything turns white, then his eyes roll back into his head, he turns gray, and passes out. I have to give him Medodrine for that, usually 10-20mg each time, sometimes 2-3 times per day. I had not heard that Cymbalta could cause that, but he does take Cymbalta, and that happened to me for the month or so I was taking it, so maybe that\'s what is causing this in Danny. I\'ve spoken with several of his doctors about this and they said that the hypotension just comes on because of his break position in his neck. He is fused at c-3,4,&5 and fused again at C-6 after he crushed that one. I just spent over a week at the hospital with him, because he had had a UTI for over a month, and finally got into see a urologist, who cultured his urine, and THREE WEEKS LATER called and told us that his superbug could only be treated by IV Primaxin for 7 days, and to make matters worse, we had been doing stretching exercises the night before, and when we brought his knee up, bent, towards his chest, it made a loud \"Pow\" sound, and the next day at the hospital, we learned that it was broken! So now it is extremely difficult to turn him with his knee immobilizer that runs from hip to ankle. He is still in horrible pain. I hope and pray that you are feeling better very soon, Dr Gottlieb. Thank you for listening so much!

RE: living the life we have

Posted by Dan Gottlieb on Oct 9, 2013 3:22 pm

thanks so much Patrick for this advice.. I will follow up with my cardiologist.

RE: living the life we have

Posted by Dan Gottlieb on Oct 9, 2013 3:26 pm

hi Cressi,
I am about to submit an article about  the dangers of hope to the Huffington post.  I will copy it on the "living the life we have" discussion.  I think it addresses the issues  of expectations..

Please take care of yourself

RE: living the life we have

Posted by Dan Gottlieb on Oct 9, 2013 3:29 pm

hi Kerry,

sorry to hear  what is happening  with your brother. Gee, when that happens to me I just tilt my chair back so that my feet are above my heart  and generally my pressure comes back pretty quickly. Of course it's  easy for me  because my chair has a tilt/recline feature. I sure hope  Danny's does
take care

RE: living the life we have

Posted by Dan Gottlieb on Oct 9, 2013 3:36 pm

when hope hurts

One day an emotion called Hope walked into the Last Chance Saloon. All of a sudden the mood shifts from dark to light and everyone is happy as they’ve all absorbed some hope. Everyone is laughing and hugging one another and the future looks great. But then it’s time for hope to leave. The patrons beg her to stay, but she says she must move on. The mood becomes somber.

Ten minutes later an emotion called Despair walks into the bar and the emotions turn from somber to very dark. Despair is beyond tears, everyone feels crushed as though something beautiful was torn from their grasp and now there is no future. Despair walks out, but in their anguish they barely notice.

You know what happens now. Hope returns and the mood lightens. And this time they beg her to stay and tell her all about Despair and how she must keep him on the outside. “I can’t do that” she says with her soft smile “that guy out there is my brother. Wherever I go, he follows.”

Personally and professionally, I’ve seen hope ruin people’s lives.

When I first became a quadriplegic thirty-four years ago, the doctors told me I shouldn’t hold out hope that I would ever walk again. In hindsight, that was a gift. Some of my fellow patients at the rehab hospital were told that they should never give up hope that they would someday walk again. Many of them went home and waited for some breakthrough in science. They wanted their days and nights filled with the kind of hope that will lighten their mood and release them from despair: instead, they discover that wherever there is hope, despair follows close behind.
My hopelessness was a painful truth of my life that I had to face squarely. Yes, I had a period of clinical depression, great fear and insecurity. Fortunately these were short-lived.

In my office, I watch couples have the same argument with each other repeatedly. I watch as adults argue with their aging parent-the same argument they’ve had for decades. And in this process, everyone is frustrated or angry. What keeps them locked in this argument is hope—hope that if they say the right word or say it loud enough, the other person will finally “get it” and change their behavior or attitude.

Several years ago, I saw a thirty-five -year-old man in consultation who came at the insistence of his distressed mother. He had a long history of severe social anxiety, OCD and agoraphobia. It has become so severe that he rarely leaves the house. He is bitter and filled with self-pity. He resented coming to the consultation. And so he began our session with an angry monologue that I am sure he has repeated many times. “You don’t understand, my life is miserable and it will never change. I’ve been through all sorts of treatments and they have all failed. I am not going to get better…” And he went on for several more minutes with a tone of anger.  Finally, I couldn’t take it anymore and interrupted him: “Will you be quiet and just listen to what you’ve just said!” He looked a bit startled but I had his attention: “you just said there is no hope. Just listen to that truth. No hope. Okay, I get that and I am inclined to agree. No hope. What now?”

He wrote to me one year later and said those final two words were the most valuable he’d heard in many years. He thought a great deal about “What now?”, knowing he would have this for the rest of his life, he stopped fighting. He joined an online group of people with anxiety disorders and began to do some volunteer work out of his home. Slowly but surely he got out of the house. He is still pretty debilitated, but feels much better about his life.

After loss or trauma, most of us wish that tomorrow would look the same as yesterday did before all of these difficulties. If we are lucky, we give up hope and say the words that open us to resilience and creativity: “This is awful and I don’t think it will change. What now?”

RE: living the life we have

Posted by goisgo on Oct 10, 2013 3:52 am

Dear Dan,
Dear friends,

pardon my bad english. I had/have a spinal dural av-malformation. And like in your case, its not a thing that stopped at point X. Its up and downs since 1 year. A progress of new things (pulmonary LE, Deep Vein thrombosis, and so on). Every time I think: Ok, you are now severely disabled, handle it, you have a great family (wonderful wife and 2 daughters), they need a strong daddy and husband, new things happened.  It was no accident. It was a slow brutal process in to the paralyses with all the things. Feeling like sinking in marsh.

So I had till last month no time to think about it.

Since some weeks I think about my new situation. Looking old photos (family vacation in rhodos, wedding day, daughters party). Seems I want to go to old life with this photos and remembers. Friends tell me, how strong I am. But they cant look in my soul. I play the strong father, husband. The reality is: I CAN NOT OUT OF MY SKIN.

Thank you for your words. Its a new kind of see the things. 

1000 regards,

RE: living the life we have

Posted by KGN on Oct 12, 2013 2:06 am

Dear Dr Gottlieb, Danny uses a manual chair to help us push him up ramps, etc, and so he does not have a tilt or recline feature. We just depend on Ted hose and Medodrine. Danny finally was able to get scheduled with a cardiologist, but he had to miss his appointment because he was in the hospital with a UTI superbug! We are trying to once again get him Medicaid, but since they say he makes too much money at $1,800 a month, we have to have over $5,300 in medical bills and/or prescription drugs to qualify, but I bet after being on IV Primaxin for 7.5 days, that may cause us to qualify!

RE: living the life we have

Posted by judith_2153764 on Oct 23, 2013 5:13 pm

I try every day to have a positive outlook.  I have been in my wheelchair life nine years now....I have definitely accepted my fate.  I only wish the general public would accept me like anyone else.  I always feel inferior, in the way, and that I should just stay at home.  (My biggest struggle is my incontinence....leakage, odor, inconvenience!)

RE: living the life we have

Posted by Wheelchair Mama on Oct 25, 2013 10:36 am

Dr. Dan, I can remember writing to you 4 yrs ago right after my accident about acceptance. Asking at what point do we accept our \"new\" lives and move on. For me I now know it\'s not about accepting my new life, it\'s about finding my new purpose. I live everyday, bad or good, for its self. I am a mother of 2 young ones and take pride in the fact that they have a mother! I get such a high just cooking an old fashioned from scratch dinner for them, it may take twice as long to do the prep work but it\'s well worth the smiles on their faces and the smells in the kitchen! Oh, did I mention that my kitchen in not accessible in any way so I have lots of \"proud scars\". I in no way condone getting burns and cook as safely as I can but accidents and boo boo\'s happen. I guess what I\'m trying to say is that after 4 yrs of being a c6/c7 quad I no longer look for my self worth or to be accepted by/from others. I can\'t change the past or the fact that I am a quad but I do have control over my attitude and how I choose to live this life. Don\'t get me wrong, I still have really low lows and high highs just like everyone but I always know there\'s tomorrow. This is not the life I thought I would be living and so desperately wish it was different but I believe there is no place for anger or regret, it\'s all about your attitude!

RE: living the life we have

Posted by Dan Gottlieb on Oct 30, 2013 3:38 pm

hmmm Jennifer it sounds a little bit like you are just doing your life and enjoying. It sounds like quadriplegia is a fact of your life and that your life doesn't revolve around it. I am confident that you suffer and have lots of difficulties beyond "battle scars in the kitchen" but they are simply facts of your life that come and go.

It also sounds like what's consistent for you is gratitude. You know, there is a word for that kind of experience. It's called: Grace

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