Julia Fox Garrison
Cell 2 Soul. 2006 Summer; 2(2):a23
We are privileged to present this excerpt from Julia Fox Garrison's book, Don't Leave Me This Way: Or When I Get Back on My Feet You'll Be Sorry, which is reviewed in this issue. It is a stunningly important book which should be required reading for all medical and nursing students, and all others who are concerned with the acute care and rehabilitation of stroke patients, whether they are part of the professional therapeutic team, family or friends. This book is destined to become a classic in the field. We are grateful to the publishers for granting us permission to provide this peek into Don't Leave Me This Way.
- David J. Elpern, M.D.
Cry Me a River
Excerpt from Don't Leave Me This Way: Or When I Get Back on My Feet You'll Be Sorry, by Julia Fox Garrison
Dr. Bleak, your assigned physiatrist, continuously reinforces the idea that you're in denial. He hasn't seen you crying or somber yet. So that's his proof. No crying equals you're in denial.
"You know," he says, "it would really help you in your recovery if you stopped blocking the facts and accepted the reality of what has happened to you. Please consider attending the stroke support group here to help you accept your condition."
Marie, a close friend of yours from work, visits you regularly. She too is concerned that you're not aware what has happened. "Julia, I can't help noticing that you're always joking and laughing. It's okay to cry. You can cry to me. It'd be good for you."
But you know full well what has happened. You had a stroke. The effects are severe. Beyond that you choose simply to pose questions, rather than make statements. They're scary, but if you were in denial you wouldn't be able to pose them at all.
Do you truly have a life altering incurable disease like cerebral vasculitis? Will the vessels in your head start to bleed suddenly? Will you have another stroke? Will you die soon? Will you be able to return home, raise your toddler, and have any independence? Will your husband become a caregiver and feel stuck in the marriage? Will your arm ever work well enough to pick your little boy up or bear-hug your husband again? Will you ever work again? Are you done being a mother?
There are so many things you could be terrified of if you chose to. You are already physically crippled. You can't paralyze yourself any further by freezing up emotionally. Your attitude is the only control you have left in your life — with the exception of what color nail polish you want, of course.
You don't want to be the recipient of people's pity, nor do you want to deal with their sadness. The solution is to always joke in a self-deprecating way. The best medicine, you decide, is a room full of laughter. Laughter helps you improve every day. There are times you have so many people in your room, it feels like a private party. People are lying on the bed with you, sitting on the floor with you, cramming their chairs into the room. You almost forget where you are.
Almost. But not quite.
If laughter is the best medicine, why do you still hurt?
Just having a goal doesn't mean you're in denial. It means you're alive. Your goal is to return to the person you were prior to the stroke. Maybe somebody else would feel it's unrealistic. Maybe somebody else would feel it's ridiculous. But it's a goal. Its better than giving up. And it's a sign that you understand what has happened to you well enough to respond to it constructively.
***
Every time Dr. Bleak makes his rounds, he asks, "Did you go to the stroke support meeting?"
"Is there anybody like me there?" you ask. "Is there anybody who is 37 years old who has a 3-year-old child? I would like to know if there is anyone who mirrors me there, anyone I can identify with." You know most people who suffer from stroke are twice your age. It's a convenient way of changing the subject.
The floor counselor and a few of the nurses also drop hints that you ought to go. It's as if they all think your attending these meetings would make you realize you had a stroke. Then you'd cry in front of them, and they could check you off some list.
***
It's not that you don't ever cry. You just do it in private. You cry fairly regularly, though, because the injury is not solely your own but also that of everyone who loves you. They are suffering as well. But crying in public is just too painful, and you know it would be hard on your family.
***
After one of Marie's visits encouraging you to cry, you decide, "Alright I'm going to try Marie's method and cry and feel hopelessly sorry for myself." The end result gives you a stuffed nose and a pounding headache and you feel like a dishrag the entire next day. It really sucks. This is not the route you want to travel for your recovery.
Dr. Bleak, making his usual morning rounds, is surprised to find you sad and congested from crying. He says, " You seem to be depressed. You really should attend the stroke support group." Now he has switched "D" words on you. Tears? You're Depressed! No tears? You're in Denial. It must be wonderful to be God, tossing those labels around and making people believe them.
***
More out of exhaustion than anything else, a deep-seated desire to move on to another topic of conversation with Dr. Bleak, you go to the next support meeting scheduled. There are three other patients and a counselor in a lounge area. The other patients in the meeting are all men, one in his early seventies who was recovering from his second stroke, a young man in his late 20's who was an immigrant from Jamaica, and a man in his forties.
The counselor doesn't counsel much, but instead demands that each person take a turn speaking. The man in his 70s speaks of his fear and anxiety that a stroke will happen to him again. The young Jamaican talks about his questions about the logistics of who will take care of him once he was released. His family is spread in different locations with his sister in Florida being the closest relative.
The man in his forties is extremely angry. He suffered seizures regularly prior to his stroke, and he had arranged to have a certain risky kind of surgery to calm his seizures. When he awoke from his surgery he discovered that he had indeed had a stroke, as his doctors had warned him. Now he is absolutely livid about his condition.
It doesn't take much listening for you to realize he has a classic "why me" attitude, and you find you have no patience for it. Every patient in this hospital could adopt the same mindset and make the same complaints. Did his way of thinking help him in any way? No. It was simply a delusion. A cheap way for him to imagine that he was somehow superior to everyone else in the building.
"I'm going to sue the doctor for doing this to me." He says.
"Weren't you told of the risks prior to the surgery?" you ask.
He screams his answer: 'I signed some documents saying I understood the risks, but I didn't think it was actually going to happen to me!"
This guy is really getting on your nerves.
"Listen," you say, "you have got to stop looking around and blaming everybody. Start looking at yourself and saying, 'Hey, I am going to get myself better. I am not going to put up with this condition.' Take all your negative energy and put it towards recovery instead of wasting it by pointing at everyone else. Because in the end, you're still going to be in the same condition…unless you do something about it. There's a Chinese saying I heard once: 'Hatred does more damage to the vessel it is contained in, than the vessel it is directed at.' Focus within yourself, and you'll have a better chance for recovery and a better life."
The stroke counselor is so pleased with your little speech that she asks you to come again and be a group leader. This surprises you because physically, at least, you are in worse shape than your counterparts. You expect a group leader to be someone who has actually made some kind of tangible progress.
You decline the offer because you don't want to belong to a group that makes going to a pity party a part of the routine. You won't allow yourself to bemoan your own fate, and you know you will have a hard time hearing the inevitable whining and rage that will come from other patients. You refuse to accept anyone's idea of what your goals should be. Goal-setting, you realize, is a private matter.
For more information about Julia Fox Garrison and Don't Leave Me This Way: Or When I Get Back on My Feet You'll Be Sorry, visit http://www.juliafoxgarrison.com/home.htm