Nearly 20 years ago, I had Guillain Barre Syndrome. Though it happened a long time ago, memory of it comes back to me like it was yesterday.
Two weeks ago I got a call from the hospital, asking if I could come in and talk with the family of a current Guillain Barre patient. It had been a long time since I had visited with a family and I wondered what had changed and how could I be of help. This is about what I learned.
I was reminded that patients and families in this situation have questions. Some examples are:
- Will I die? Will I walk again? Can I ever get back to work? I have a family that depends on me and will I ever be able to support them again?
- What will happen to me?
- What is happening to my body? How did I get this?
If you are a nurse, you may see Guillain Barre once, every couple of years. It doesn’t seem to happen that often, and it varies in severity. You do the treatments and monitor the vitals, and do the best you can with this odd and insidious condition.
If you are a doctor, you may have seen this a few times. There are treatments to prescribe and they are somewhat limited. This story is about the person lying in the bed and the families that have to deal with all the uncertainty of recuperation…
Her name is Barbara and her husband came down with the odd symptoms of Guillian Barre over five weeks ago. She asked for me to come and show her husband that he will walk again. It’s the one thing that I can do- I simply come and say hello. She asked me many questions, and I had limited answers. Most of all, I tell her, she needs to be patient and let the body rebuild and heal. How foolish it feels to say that. Like them, I want to tell them that there is an answer to all of this or how some bug got in and we will get rid of it with medicine or treatment.
It’s not that way. A great deal of patience is required and with time, so very hard to find and maintain. It seems that there is so little that can be done. As I talked with Barbara after visiting her husband, my own experience came back to me as if it were me lying there. I asked about things that were happening with her husband, what kinds of things she noticed and what it is like for her to find ways to communicate with a man on a vent and only a bit of movement in his neck and face.
My experience lasted for 92 days in intensive care and about 6 weeks in rehab. During that time, many treatments were initiated. I would begin to improve and then crash again. This happened three times. Each time, I became more discouraged and exhausted. That’s one thing about GBS, it exhausts you. In every way it exhausts you. And I was no exception to that. I was thoroughly awake during all of it. My only way to communicate was through an alphabet board- a clip board that has the alphabet on it. I had to decide what one word would communicate my need and then go one letter at a time to spell the word out. By the time we completed one word, I was out of gas. And if that one word did not work, it was exasperating and completely discouraging. For those who know me, you know that I love to talk. Probably, I have made up for all that lost talking time in these last 20 years. For those of you that I owe an apology, please accept it now.
In talking with Barbara, I asked about her family and how they are doing. Of her three children, they were having a real tough time with coming into the hospital to see their Dad. I saw that in my family and friends, and it is really difficult to see the impact on people. That ‘look’ is universal. Now I understand why cancer patients hesitate telling people what they have.
She told me that his mother was very emotional and very demonstrative while in the Intensive Care Unit. She would cry and make medical assumptions about his condition. That was another reason that Barbara asked me to come- to talk with her mother-in-law and show her that her son would get better. Unfortunately, Barbara’s mother-in-law would not meet with me. Like Barbara’s children, it may be too much to bear.
What GBS does to families is insidious. It shakes them down, disrupts their lives and drains emotions.
I had very strange dreams, lack of sleep, and interruptions in the early morning hours. The dreams repeated over and over. I was incorporating things in my hospital room into the scenes in many different places. I dreamed that I was in a large capsule of liquid with only my head out. I made trips to McDonalds drive through in a carriage under a school bus at the five o’clock rush hour in the heat of the summer. I was moved from Sacramento to Bakersfield each night to a car cover area that had the look and feel of my room- just out of doors. I have often wondered, ‘why Bakersfield?’, but have no explanation for that part.
I had no way to scratch an itch, had intermittent sleep and the lights were always on. It was exhausting. I mention scratch an itch because until you cannot scratch an itch, you have not lived or suffered. If you have had a broken arm or a cast, you know about itches. It would be great for hospitals to address the lighting issue. Perhaps motion sensors could be placed at the door to bring the lights up and a timer to turn them down after they have left.
While it is happening, it’s a nightmare- a physical prison. I had a very active life prior to this. I was blessed with free movement, without pain for my first forty years. Within four days I went from full movement and activity to complete paralysis. The pain was excruciating. I had never experienced pain like that before. Everything hurt. In talking with other people, I learned that it was like what some call ‘bone pain’. I would relate it to a very bad tooth ache that just wouldn’t stop over every inch of my body. I received morphine every four hours and begged for Demerol in-between. The headaches from the morphine were unbearable. I would have done anything to get the drugs, but to no avail. Paralysis made sure of that. Not only did I feel like I was going crazy, but I had become a drug addict. The icing on the cake- I became paranoid.
I could make nothing move, could make no sound nor cry for help. Fear mounted and escalated with each change in the shift of the nursing staff. Each shift became a time of terror. “Who will be taking care of me this time?” “Will it be the one that wouldn’t come in to help me, or who hurt me over and over again?” “Would it be the one who regularly nicked me while shaving me, or who bumped or pulled on my legs sending shots of pain beyond description?” “Or the one who already knew everything and had no compassion that day?” What a trifecta- drugs, paralysis and paranoia.
Barbara told me that she asked the nurse at 6:30PM to help make her husband more comfortable. She asked again at 7:30PM, 8:30PM and 9:30PM. Each time the nurse was too busy to come in and help. She needed to help her husband be more comfortable. She cannot make it better. She cannot do anything but make him more comfortable. And all she asked for was help to re-position her husband so that he could be more comfortable.
I needed people to bring comfort, adjust my body alignment and help me be more comfortable. I knew that they were really trying to help. I was told that I would live, I would walk, and I would talk again. But right now, I needed comfort. To me, comfort meant changing the TV channel, wiping my forehead, adjusting the pillows around my arms, scratching an itch on my nose and keeping my body temperature adjusted with fans, or coverings. Or a kind word of encouragement.
The duties of the nurses are to keep me alive, and the machines help monitor that for them. With Guillain Barre and me, it wasn’t about treatment. It was about endurance- about making it through until the body can rebuild itself-making it through the night, making it through the shift change of the nurses, and making it to the next moment. I have heard it said that ‘he wins who endures to the end’. The length and severity of my journey surely tested the road to the finish line.
Those nurses who demonstrated compassion had my undying respect and admiration. And it was because of them that I kept coming back for ten years after my recovery to talk with families and patients.
One of the most difficult aspects was how much impact some of the nurses’ lack of compassion and caring had on me. It created unbelievable fear. And being afraid takes energy- lots and lots of precious energy. For the first time in my life, I recognized that I had limited energy. Energy had always been something I had never thought about. Whenever I needed it, it was there. I was learning, for the first time, that my energy was in limited supply.
I saw this in Barbara’s eyes. I heard it in her voice when she could not get help for three straight hours. Being uncomfortable takes energy, too, and made my anxiety rise. Barbara’s husband had the same feeling. If the blood pressure goes up, or the heart starts to race, as was the condition that Barbara faced, her husband was in more danger. Interestingly enough, when he was comfortable again, his vitals came right back into alignment. I cannot say that there is a direct correlation between the two, but I can say that it helps to be comfortable.
Nurses make a difference. They have to because they are the ones’ who kept me alive. I had some remarkable nurses. They did things like take me outside so that I could see sunlight and feel fresh air on my skin. They took me to the chapel to pray. They wanted to make me comfortable. They tried a host of different things to help me be so. They sat me up in a special chair to keep the pneumonia away. They comforted me. One night, the movie Blazing Saddles was going to be on TV. We made it a party. We watched the movie, pretended that we had popcorn and laughed at one my favorite movies of all time.
And they also knew not to push me too hard. They held the reigns back on me so that I would not try to do too much. Even in the recovery stages, exhaustion is still very prevalent. To this day, I have to stop from time to time and rest for a few minutes. In the first years of recovery, it was a regular thing. Taking a few minutes to recover would be all that I would generally need.
GBS is not standard treatment. It not exactly within the model of what Intensive Care nursing might be. And know that my observation is one of a person who does not know nursing. I only know the perspective of being a patient. Or the person called in by families. I do not know what it takes to become a nurse, or why people choose nursing as a career. I know what it feels like to be the recipient of the nursing and good nursing is healing. It makes the horror more bearable.
Here’s what I learned. Families need to advocate for their own. They have to stand up and ask for help. Know that there will be a strong push-back from many in the medical community. And they still need to stand up and advocate for their own. That may mean asking and even demanding help to make them more comfortable. Most hospitals have Social Workers assigned to cases like this. In my case, they were ineffective. If that be the case, the family needs to find another way to get the support needed for their loved one. Again, advocate and even demand help and support for their family member.
A family needs to take care of itself, including their own needs for sleep, a break from being in the hospital, other family needs and activities. As much as possible, they need to take care of themselves so that they can take care of their own. That would be my primary recommendation and why I write this now.
In addition, I recommend that Charge Nurses assign nurses to patients who have the capability and compassion to meet the needs of Guillain Barre. GB patients will probably be there longer than what is normal in Intensive Care. They will need more attention than most. Perhaps this could make a difference in shortening the patient’s time in ICU. And it may not. But it will make a huge difference for the patient.
I look back with gratitude. Guillain Barre was one of the greatest gifts in my life. It was a game changer for me. There are things that I cannot do like I did before GBS. I have never been able to learn how to run again, and my balance is odd. Each time I stand up, my first step or two are an adventure. My legs go back to sleep and wake up from time to time. Pain in my lower extremities is something that I have to manage. And I get tired more easily. With that said, GBS was a gift and I am grateful.
I was able to see my Sons graduate, make their way in the world and meet my Grandsons. I have been in the bonus round for many years and look forward to see what’s next.