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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Don replied on Permalink
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.
Rachael replied on Permalink
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!)
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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 -
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Jenny replied on Permalink
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.
Maria replied on Permalink
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.
Tanya replied on Permalink
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.
danielle replied on Permalink
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.