If I Could Tell Doctors Just One Thing

If I Could Tell Doctors Just One Thing

At the beginning of my caregiving journey, right after Hugh was hit by a car and endured two emergency brain surgeries in three days, he slept in a coma. I remember everyone telling me there was no prognosis, things looked very bad, I might want to say good-bye.  Everyone said some version of this to me except one person, Hugh’s surgeon, Dr. John D. Ward.

At a time when all I had were questions — questions with no answers — he gave me hope with one simple sentence. “Your husband is a strong man in good shape, Mrs. Rawlins. I think he’ll make it, but I can’t promise anything.”

This was the sentence I could take back to my daughters, back to the waiting room full of frantic family and friends, back to my bed at night where I felt most alone and afraid. This was the sentence I repeated to myself over and over and over again until I finally believed it.

If I could tell all doctors just one thing, it would be that hope should never be completely obliterated. Hope is sometimes the only thing we have to cling to. It’s that fragile branch above the rapids, bent and on the verge of breaking, and yet we grasp for it and hold on tightly no matter what.

I understand that in medicine, there is often bad news, sometimes there is nothing that can be done, but nothing is ever over until it’s actually over.

Dr. Ward lived in the moment with me. He admitted that the situation was dire, but he gave me a sliver of good news and didn’t make any promises. I believe his sentence should be in medical text books.

A woman I knew whose husband is a doctor visited me about a month after Hugh’s crash. I remember she shook her head sadly and said, “My husband has seen a lot of brain injuries and Hugh will never be the same again. It’s so sad. He’ll never get better. I’m so sorry, Rosemary.” Instinctively, my heart blocked her words. I didn’t respond to her because she was sincere, but I was angry inside. How dare she strip away my hope? Without hope, why would I continue killing myself to help Hugh recover, to get him to rehab, to encourage our kids to engage their Dad because it would help him? Hope was all I had. It was everything.

I’m happy to say that she was wrong. And her husband, the doctor, was wrong.  Hugh made incredible strides and continues to thrive today. I’m so thankful I did not listen to people who said, “He’ll never get better than this.”

One thing we all now know is that every brain injury is unique. Every person will respond and recover differently and at his or her own pace.  We also know that the brain takes a very long time to heal. Dr. Ward told me that he believes the human brain has an unlimited capacity for healing over the lifespan when people live a healthy lifestyle.

If you are a caregiver, never give up hope.  Hold tightly to it every minute, hour, and year. Our hopes create our vision for a better tomorrow, and visions pave the path to positive actions and outcomes. 

Comments (23)

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I lived that very story with my wife. I cant say I never lost hope when there were so many in the medical field trying to rip that away. Its been 9 years and my amazing wife did beat the odds although our lives were radically altered. She was in a wheelchair and required daily care but things could have been worse. But 2 years ago she need open heart surgery and after a year of progress and things were looking up this damned virus took away all our support and then she has had several medical set backs . Today I live without hope and I am not sure how much longer I can do this. Its a horrible way to live I know I could never place her in a facility and I know I cant do this without it taking a tool on my health.

I will never forget a patient I took care of years ago, before I was even done with school to be a nurse. I was working occasionally for a community hospital, and I worked on all the different floors, so I did not get to know patients and how everything turns out for them. This patient that I took care of was just for one day. I was told he had been the driver of a car on an interstate highway and he had been hit head on by car going 70 miles per hour. That other driver was committing suicide going the wrong way on a divided highway. She did die, and he was nearly dead. He had a severe head injury and multiple broken bones and injured organs. By the time I saw him he had spent a month in the ICU and he was now on the surgical floor. He could open his eyes but that was all, no movement or noise, no communication of any type. It sounded very unlikely that he would ever recover much. No one came to visit that day. I was sad for him.
Two or three months later I was in the same hospital and needed to stop in to the nursing office on the third floor. I was in the elevator with one person. This man was standing quietly to one side, and was using a cane, and I thought “He looks familiar”, and it struck me that he was that patient!! He was alone, not needing any help, just a little limp and using a cane! He didn’t see me smiling and I was so stunned I could not speak. I know no one would have guessed that he would ever recover to that degree or that rapidly. He gave me hope for all the patients that I would take care of over the years that might have seemed hopeless. I would think of him so many times and know there was always hope. (It makes me cry just telling this story!)

Tell doctors that recovery is not a 1 - 2 years process. For doctors to say that we will plateau and the recovery process will stop… is wrong. The recovery process never, never, never stops.
Hope is vitally important. It is something that the more senior doctors seemed to understand when they spoke to me about Bob's injury. A younger doctor made a very similar comment to the woman you mentioned in the article. Took a long time to move past that. Thank you again for sharing your and Hugh story.
There is always Hope. I too have brain damage and have done so much that I was told that I would never be able to do. I DID, HE WILL..
Hope is a good thing, maybe the best of things, and no good thing ever dies. Shawshank Redemption John Passaro www.JohnApassaro.com
So awesome you stood by his side...no matter what. Glad the doctors were wrong.
Laura Cooper Kitchings I had a nurse tell my kids and me that we should stop visiting so often because we needed to go home and get on with our lives and that he would be there for months and may not recover. Told us to get back to our normal routine. This was after 4 days in ICU . One week later he was awake and a week after that he was moved to rehab. Looking back, I did the same thing. I did not entertain the possibility of the worst case scenario. I dealt with the crisis of the present moment, seemed like there always was one, and did not use energy predicting the dire future. Plenty of others were doing that for me. Don't get me wrong, I wasn't delusionally chipper- I just tried to focus on the present and getting through a day at a time. The surgeon told me he would not be the same person, that he had a 20% chance of surviving, let alone any recovery. He said he was reluctant to even do surgery because he had watched so many families have someone wake up as a completely different person. In fact, they put a stomach tube in that was designed to be permanent because they were so sure of the long recovery. He had to wait weeks to have it removed even though it wasn't being used.
The Dr.'s only know what they know and if you dig deep enough they admit that they have limited understanding of brain injuries. Non medical studies have shown the frequency of a positive energy has an atom altering affect on inanimate objects. The power of hope and love is more powerful than most medicine.
Hope and FAITH, Always keep the faith if you have hope and you believe in your faith, FAITH CAN MOVE MOUNTAINS!!!
If only your word would resonate throughout the BI community! You are so right, no doctor, no tests, can ever predict the human spirit and it's power to recover. We experienced the same thing when our 21 year old son was tested and we were told he would not improve. How happy we are that they were wrong. It is such a slow process, though, and he will probably never be the same person he was prior to his BI. That is the reality that we must face, but I find some comfort in the small progress that he makes with each day/week/year. Thank you, Rosemary, for continuing the HOPE in all of us.
Thank you for these beautiful words! I just read this to my own husband who is in year 3 of his own recovery from TBI . His doctors told me the same thing. I heard it many times over and I am happy to say that he woke up from a 3 week coma and over the course of 3 years has made a remarkable recovery with myself and his children cheering him on every step of the way. Yes there is hope, and miracles are happening every day! Dawn
I am happy for you. My boyfriend had an car accident and his brain is bleeding, theres blood clot too. Doctors said he only have 20% chance to survive if he undergo the surgery. They did not want to take the risk to operate. He was told that he have 10 years or even shorter life to live. Only god knows we live or not. Doctors can't be right all the time. Never give up hope. Hope for the best. Prepare for the worse.
Thank you for this. I wish my son had your surgeon. When the surgeon came back after his first brain surgery--- he said he may never.... know us, see us, walk, talk, work..... so I looked him in the eye and said "But you don't KNOW do you". And he has proved him wrong on everything. We have to hold onto hope!
Thank you for a wonderful post, Rosemary. At the one year anniversary of my own TBI, a well-intentioned neuropsychologist sat down with my wife Sarah and I and said that I was about as good as I’d get. He went on to say that any future gains would be small – if at all. He said this during a particularly difficult time in my recovery and the thought of staying the way I was devastated me. You hit the nail on the head in a way I’d never really thought about. He took away our hope. My stubbornness paid off as I adopted an “I don’t care what the doctor said, I am going to get as well as I can” attitude. I have since heard so many others share similar stories. Thank you and Hugh for sharing your lives with us all. ~David A. Grant
You are not supposed to say things like this out loud or in a public forum but I sincerely wish that the individuals that bought my husband back to life after 27mins without a heartbeat or any spontaneous circulation had not done so. He was bought back, kept alive in ICU for three weeks, moved to a hospital ward for another eight weeks, onto a specialist brain injury rehab unit for another 9 weeks and then I was left to take him home with limited support, no ongoing rehab or pyschological support and literally abandoned. While he has recovered to the extent that the average Joe Bloggs would never know he has a severe anoxic brain injury he knows that his life is never going to be the same and he is desperately unhappy. He is unable to motivate himself, suffers from extreme apathy because of his pre-morbid personality and will never be able to work or drive again. After two years he is making no improvement. Hi slife consists of sitting at home watching DVDs. He can converse, is physically able and looks like anyone else. But his brain is unable to function in a meaningful way. He often speaks of his sadness of being bought back from what was a perfect death to live an imperfect life. How do you answer that!

I'm reminded of Emily Dickinson's words:

“Hope” is the thing with feathers -
That perches in the soul -
And sings the tune without the words -
And never stops - at all -

The most helpful works that a doctor said to me on week two after my husband, Bob's TBI was "Bad things happen fast, good things happen slow." Truer words were never said! Those words comforted me in July 2009 and they comfort me today. Every day brings new hope when you keep you eye on the goal! Julie
So true...I can remember vividly the first doctor to say something that actually gave me hope while my husband was in the trauma unit after his accident. He said "Charles is going to be ok, you have a very long road ahead but I believe he is going to be ok". I wanted to grab him and hug him when he said that! Every other doctor kept saying we don't know, we will have to wait and see. I understand there is no guarantees with brain injury but that one little comment gave me the fraction of hope I needed. That doctor definitely wasn't lying about the long road part either but a year and a half post TBI my husband has made amazing progress. Thank you Dr. Oswanski, your words meant more than you know...

Thank you for this. My boy is almost one year out from his TBI after being hit by a car, and he is getting better every day. I have these exact same thoughts. I don't know why doctors think they are being helpful when they try to take your hope away. They can't possibly know the outcome. Nobody can. Hope is what keeps us going, working tirelessly everyday to maximize their recovery.

My son was in a motorcycle accident March 2016. The same, there was no prognosis for my son. He was diagnosed with hypoxia, diffused axonal injury and went into cardiac arrest. His doctor wrote on my son's FMLA paperwork that he will never do his type of work again. My son is in law inforcement. He had like four doctors and the neurologist gave me hope too. He looked at my son's imagery and said to me, "he will recover in one year". I grabbed those words and didn't let them go. But in the back of my mind, there were the other words OD the other doctor. My son has made tremendous progress. And yes, it took a little longer than a year for my son to regain his physical and mental abilities again. But he did it and continues to do it every single day. And his brain is still healing. He hadn't gone back to work; but, he's the n that transition at the moment where the doctor already sent a back to work letter. Thank you for sharing. I totally relate.

My husband suffered a TBI one month ago today. He remains heavily sedated and has struggled to remain alive every day. His prognosis is unknown at this point. Thank you for this blog which gives me hope. Hope is all we have some days. God bless.

My brother fell on April 11th 2017, and he is STILL in the hospital, over a year later- he's in much better shape than he was last year at this time. He is awake and able to watch t.v., look around, move his hand. Still lots of issues with him, but I am glad that he is here, and he must have fought to still be here, even though he cannot communicate with us yet.