“Strong At The Broken Places”

I’ve just finished reading “Strong at the Broken Places” by Richard M. Cohen. I was actually a little hesitant to read this book at first, because he is telling the stories of the people that he chronicles. He’s already had a chance to tell his own story. Now it’s time for him to let these people tell theirs.

I personally think that while he is telling the individual stories, he interjects his own experiences and opinions too much. He often tries to play junior psychologist. And it really bothers me. What right does he have to pass judgment on the way people cope with their illnesses?

At the outset, before I even started reading, I was of the mind that these people should be telling their own stories. No one knows us better than ourselves. And after reading this book, I believe that to be even more the case.

Okay, so aside from the criticisms… The thing that really struck me about the book was how the five people, whose stories are chronicled, impacted each other when they finally had a chance to meet in person.

I’ve learned over these past few months that the journey of chronic illness is a bonding experience. It is not one that can be faced alone, and yet, help often comes from unexpected places. The places of refuge of the past no longer suffice for what is needed. While it can be lonely when those immediately surrounding you do not understand, those that you encounter who do, become invaluable allies and friends. Even if we don’t have the same diseases, we can relate to each other in a very powerful way. Even if we are thousands of miles apart, we can help and support each other.

I am still struck today by something that happened during my steroid infusions. I was trying to ask the nurse if I was allowed to listen to my IPod. I couldn’t get her attention. The girl next to me, who was just a few years older, was there for chemo. She said to me, You do whatever you have to do to get through it. It was so strange, I thought to myself. This girl has cancer and she feels sympathy for me? What I have come to realize is that chronic illness transcends individual diseases. It transcends race, class, and gender (not in terms of economics and politics, but in terms of us). It brings together people who would otherwise probably never meet. I think that’s what “Strong at the Broken Places” attempts to teach us. We are “chronic,” yes, but we are also many other things, as well, and together, we truly can make a difference.

*****

“Chronic conditions attack body and spirit, assaulting the quality of our lives. Some are life-threatening. All are life-altering. Ever so slowly, moment by moment, function and sensation cease. Muscles and nerves malfunction. The body’s processes grow difficult. Our view of ourselves as normal human beings making our way in a neutral world is challenged as, in the eyes of others, we become our illnesses” (xvi).

On the one hand, I want to be seen as who I am, which is someone much more than a sick person. On the other hand, my illness is now a large part of who I am and continues to shape my self-concept and the person that I want to become.

“Chronic conditions do not resolve themselves. Unlike terminal illness, there is no high drama with these diseases. They are not sexy, and are little noticed or understood by an unknowing public that would prefer not to think about them. Those who are hit hard know the frustration of being marginalized, reduced, and pushed to the side by these chilly attitudes” (xvi).

I think, while I’ve said this in various ways many times, worse than the physical and emotional pain I suffer, the emotional pain caused by others is far more damaging. And I truly feel bad for those who have lived such easy lives to this point that they cannot, even for one second, imagine what anyone other than themselves goes through; whether those others are poor, have a chronic illness, or the host of other life conditions that some are lucky enough not to have to endure.

“We have so much at stake and so much to say, but it can take years of battle with our own demons to recognize the power of what we have to offer one another. Nobody will speak for us with the authority we bring to our own stories” (xvii).

Honestly, based on the way this book is written, this comment confuses me. I think it is incredibly true, but I’m not sure that this book comes even close to achieving that.

“For the sick, living among the healthy is no piece of cake. Empathy is in short supply. Daily brushes with public ignorance and indifference and the stigma of being sick in a society that worships health, brand and define us” (5).

No one wants to be sick, and any insinuation to the contrary is, putting it mildly, incredibly insulting. I know a lot of people who have a flare for the dramatic. A cold or the flu, for them, might as well be cancer. Any indication that their body is not well, is surely a death sentence. And I do not hold this against them. There inability to cope with such things is due to the fact that they have never experienced anything worse. Once they do, such common things will become nothing. Well, it won’t exactly become nothing. Because they will wreak havoc like they never did before. Even the simple things will be unrelenting, unstoppable. But the memory they will have of those past times will make them realize that those illnesses of old were nothing. They were a kink in the chain, not a break in the links holding the chain together.

So why hold my less than perfect body against me? I did not ask for this. I didn’t ask for my whole life to be turned upside-down at the age of 22. No one does. And so, we go from being people, human beings with thoughts and feelings, wants, needs, and desires, to being our illnesses. And nothing more.

“Know this. Ninety million Americans battle chronic illnesses everyday… Welcome to your future” (6).

This line sent shivers down my spine. To think that I am sick is one thing, to think about so many others having to deal with this type of thing, as well, is truly startling.

It’s funny. My dad has Crohn’s disease and has had it since he was 18. He was very sick when he was first diagnosed. He needed blood transfusions and almost died. But he has moved on. His illness does not define his life, and I often forget that his illness is even a part of it. I think he is truly one of the lucky ones, because I think it so rarely happens that your body is attacked to such a full extent and bounces back to near completion.

“Hiding is easier when the other person cannot see…” (12).

You know, I’ve come to take being alone more often, over the need to lie to people all the time. People are compelled to ask how you are. And in return, I am compelled to say that everything is fine, because, in truth, it is only a rare person that actually cares to hear the answer. And it is more rare that I feel strong enough to put myself out there emotionally and offer up the truth.

“The feeling of emotional abandonment by physicians, the very people who should be counselors as well as care providers, can be devastating… The quality of our connection to a trusted physician becomes an emotional lifeline. We lean at difference angles and with varying degrees of force in our search for support… When our heroes in white falter beneath our weight, we struggle to stay standing” (77, 79).

It is incredibly ironic. Those most vulnerable manage to melt away the veil of supremacy of those who are supposed to hold the power.

“Threatening illness demands a period of self-absorption so that, afterward, we can help those we care about” (81).

I think this is very true. Though my parents and I have never talked about it, I have thought a lot about how much I want or don’t want to put them through. I think that I have been so hell-bent on going to most of my appointments and stuff alone because I wanted to protect them. The question is – what do I want to protect them from? They’ve been through a lot in their lives. I would like to spare them the pain of watching their child’s body fail, not work to its full potential. You know, this road that I’ve embarked on is a never-ending one. It will be with me for the rest of my life, and unfortunately, it will be with them for the rest of theirs. I don’t want them to think that there was anything they could have done about this. Because there isn’t. There’s nothing anyone could have done. Our care and vigilance of ourselves and others only goes so far and it does not uncover the things we have yet to discover.

I think that if we admit to others that we are thinking about them and their needs, it brings a whole new reality to the situation. It suggests that what is happening is really happening, and not just to us.

“Too frequently, that is the story of chronic illness. Pain becomes a small price to pay for survival” (84).

Pain can be hidden behind a smiling veneer, behind the workings of pain medication. What can’t be hidden are the changes of the body, the physical changes that are visible, whether we want them to be our not. For some, they are immediately evident. For others, they will come later, after years of fighting them off, after years of hoping they may never come.

“The nightmare of unrelenting chronic illness is that pride must yield to survival, no matter how you were raised or what you think is expected of you” (101).

I think this is totally true. Those who have chronic illnesses have one fact thrown in their face – listen to your body… or else. I think, even after diagnosis, many of us continue to push, and we quickly learn how far pushing the limits gets us. It’s not as fun as it used to be. Pushing the limits isn’t as full of as much gusto.

“In a state of serious sickness, acceptance of a limited life can arrive in a low drip, especially when we are young. At first we resist any knowledge of our limitations. Then, little by little, we let the truth in, particularly when the insensitivities of others are thrown at our feet” (142).

I know I keep coming back to others, but I think that when you are young, acceptance does come because others make sure that you feel bad about yourself. And it’s easier to say I know what my issues are and I’m okay with them. Why can’t you be?

“Our imperfections take over who we come to believe we are. Limitations loom large. Even our loving families do not get that. They see what they choose or need to take in and process” (154).

This is so true. I think, especially in terms of those closest to us, their lack of understanding isn’t meant to be malicious. They see what they want to see, the person that existed before illness.

“I think of acceptance as giving in” (175).

Well, that certainly is something to ponder. On one hand, I’m inclined to agree. On the other, if we don’t accept our illnesses, how do we ever start to live again?

“The state of siege inflicted by illness and drugs never ends. Always there is the awful question, What’s next? Whatever the answer, and always there is a next, fatalism hovers nearby. Things always can get worse” (202).

But the thing people forget is that these are powerful drugs. Some even get into our DNA, trying to manipulate back to the way it was, just as the disease manipulated it to its current state of being.

“Those who suffer serious sickness know there is an ambulance with their name on it, parked just around the corner” (237).

This really resonates with me. I live near a hospital and my senses are constantly bombarded by the sounds of a lack of health – medical helicopters and ambulances have almost become the proverbial soundtrack of my life. When things were worse and even more unpredictable than they are now, I constantly wondered if one of those ambulances would be coming for me. I know that sounds morbid, but that’s what my life was like – waiting for the guillotine to fall. And I think there will always be this type of unease and worry. What will happen next. Will this be what sends my body into a tailspin? Those who have health know nothing of this.

“We can only hope the indifferent around us, next door and down the block or around the corner, will view us as more than our diagnoses and find value in who we are and what we can offer” (328).

I think this is all some of us hope for, and a hope that often falls on deaf ears.

*****

The individual stories in this book were truly amazing to read. I felt like I had a lot in common with them. But I do think that Cohen’s voice still comes through more than the others and I worry a little that their voices weren’t as loud as they hoped them to be.

I hope to have up a post about Cohen’s memoir, “Blindsided,” once I finish reading it.
*****

(Cohen, Richard M. Strong at the Broken Places. New York: Harper Collins, 2008.)