A Different Normal

by Richard M. Cohen

Harvey has found his voice. The stroke almost killed but did not slow him down. The near-death experience seems to have given Harvey a reason for being. Harvey has a great belly laugh. He is endlessly cheerful. Harvey, quite obviously, is glad to be alive. His life’s recital continues. And I want to applaud whenever I speak to him.

To ‘sing’ his way back from devastating brain trauma is nothing short of inspirational. The statistics on stroke are grim. It was obvious when I talked to Harvey that he is a survivor. Do not minimize the guts he has in sticking with it and almost clawing his way back home.

We all have a lot to fear from a stroke, and most of us know little about it including the warning signs. Go ahead. What are they? Here are signals of a stroke in progress; a drop in the mouth, uncontrolled movement in the arms, unintelligible speech.

Harvey’s description of the “Country of Aphasia”, his expression for the inability to pull words from his mouth, is breathtaking. I cannot imagine having thoughts locked in my head with the inability to share them. The brain is an amazing instrument. That Harvey could use the right side of his brain to coax words and full sentences out of the left side is extraordinary. We have so much to learn.

Harvey is disabled, though one would never know it. We cannot see his speech problem. But listen. My voice slurs from the MS. Harvey must have the same awkward problem. He probably ignores it.

But call Harvey at home, and if you miss him, listen to his answering machine. The voice is crystal clear because the message was recorded before the 2006 stroke. He leaves the old message intact, he says, because he cannot bring himself to erase a perfect past.

Harvey has become a full-time advocate for stroke victims with aphasia. He is a new and different person from before. I have been asked if I would trade in my MS. After a pause, I always answer, no. This is who I am, and I have a job to do that is bigger than what I have done. There are no heroes here, no medals or merit badges. There only are people who care deeply, flesh and blood like you and me, individuals who see it all and want to make life better. Helping others offers its own reward.

No one wants to feel different. Chronically ill patients want one thing most: to be normal. Can a person be normal after a debilitating stroke? Add your comments to this Discussion in the Chronic Disease & Disability Exchange.

by Richard M. Cohen

Her self-esteem may be cracking, the private, undetected casualty of a debilitating chronic illness. Ann Marie Johnson hurts from her war with multiple sclerosis. But that is for few to know. She wept as she talked to me about her self-doubt, her fears for the future. Ann Marie longs for a husband and children, but believes MS has taken those from her. Often, she is reduced to just getting by.

You would not know it. Usually, Ann Marie puts her best foot forward. That becomes her great defense mechanism. Her sadness stays private as she heads for the glib. “I’m just a young, sexy black chick from Brooklyn,” she laughs. With MS, I add. “With MS, she says a little more seriously.

I wonder aloud if she feels less sexy because of the MS. “At times. Some days, I want to put on special shoes, and I can’t because my hands don’t work or my legs, you know, numbness.” Ann Marie pauses. “And forget about the cute little shirts. I mostly can’t button them.”

The refusal to casually acknowledge difficulties is a quirk we both share. I wonder if it is the fear of appearing weak. Ann Marie just goes on automatic pilot. “You got to just smile and when somebody asks, how is it going, it’s going okay. You just say it.” As if anyone wants to hear the truth.

One problem is that MS, as with other chronic conditions, may not appear obvious to the casual observer. “You can say it’s a rough day. But if you don’t look like it is rough, your honesty can be taken for exaggeration.” Some of us joke about people saying, but you look so good, evidence, much to their relief, that we are not really sick.

Friends and acquaintances do not want us to be sick. They hate the idea, so they minimize everything. “You say the fatigue is kicking up,” Ann Marie says, “and they answer, ‘oh, you’re just tired. Take a nap.’ They don’t understand.” Or want to. I have been legally blind for years, with badly damaged vision from my MS. People ask what is wrong. Bad eyes, I respond. That is good enough for them.

A sick person just knows instinctively who to shield from the truth because they can not handle it. “Sometimes it depends on the audience, maybe family and friends. Sometimes you have to put on a good face and give non-answers. I can put on a really good face.”

I know her game. I have played it myself over the years, never really understanding my own need to outwardly appear so calm and at peace. Neither applies to my true state of mind. We need to appear normal to succeed. Perhaps people believe, hope, really, that we are going to be alright. To appear in control, the fiction goes, keeps us in control. Look the part, and it can come true. And we all live happily ever after.

I think sick people worry about what other people think. We are scared. Is that why so many with chronic illnesses feel the need to put their best foot forward? Add your comments to this Discussion in the Chronic Disease & Disability Exchange.

by Richard M Cohen

It is tempting sometimes to play victim. My constant combat with MS leads me to the edge of that cliff every so often, but I know if I go over, I will be splattered on the rocks below. Self-esteem, if not personal pride, does not allow me to go there. Life goes on and despite rather pronounced bumps in the road, is good.

Why me? That question you might expect Ryan Martin to ask repeatedly. He does not. What a dangerous question that is. Ryan was shot in the back as a teenager, a bullet he did not deserve. Why not me? It all happens by chance. Somebody has to pay the piper. There are others with equal, if not worse problems than mine, and I do not hear any whining out of them.

Sometimes looking around and taking in another person’s life can feed a valuable coping mechanism. Things always can be worse.

Dr. Ryan Martin took a bullet he had not earned in his back when he was only a teenager. He has been sitting in a wheelchair ever since. That alone is unimaginable. Ryan had the perfect “Why Me?” license. He became a victim candidate. He did not accept.

We all hear people say, oh, I could not cope with that; I could not handle it. We sell ourselves short because we are stronger than we think. You do not know what you can handle until you are tested. Fortunately for many, that day never comes. For the sick and disabled, the test is real. I think most of us pass.

Yes, Ryan’s mother pushed him to work hard and succeed, but Ryan was so young. The pull to play the role of a broken person must have been powerful. Ryan is not the first person whose story I have chronicled who has kept moving forward and found his way across a wide river.

What is so striking about Ryan is how completely he has integrated his disability into his life. He feels normal. Ryan barely thinks his life in a wheelchair separates him from able bodied colleagues. The man is patient with those who insist he must be different. Ryan is at peace with himself, which puts him ahead of others who assume he feels diminished. The man does not.

What is it that rests deep inside a human being, what reservoir of inner strength exists? Some force enables that person by force of will to pull himself or herself out of the deepest holes to pursue a normal and productive life. This man became the first to graduate from Yale medical school in a wheelchair. Ryan stayed at Yale to become a fertility specialist and just was offered a private practice position at the university.

What kind of physician will this man become? Will he be different from all the others? Maybe the tragedy in his own life will make him a kinder doc who relates to his patients with ease. There is an empathy gap in medicine today. Will Ryan Martin fill that void? He just might. Young doctors desperately need role models. They can play that part for each other. The older generation of physicians generally is a disappointment on that score.

Dr. Ryan Martin. I wonder what he thought when he was fifteen, what he could see in the distance. He dreamed and worked to make it happen. Ryan became a doctor to help others. “Life shrinks or expands according to one’s courage,” writer Anais Nin suggested. Dr. Ryan Martin lives that every day.

It is natural to feel cheated by an act of violence that leaves a person in a wheelchair. The calm response seems unnatural. How does a person in Ryan’s position, practicing medicine from a wheelchair, never able to stand over a patient, keep him from being consumed by anger? Instead Ryan was philosophical and calmly found his way into medical school. Add your comments to this Discussion in the Chronic Disease & Disability Exchange.

by Richard M Cohen

We are a nation of cancer phobes. For some of us, the fear of that dreaded disease rests somewhere in the back of our minds. For others, the fantasies never go away and people are jumpy enough to discover a new symptom every day. I had colon cancer twice and never had given the big C. a thought. When the diagnosis comes, instinct takes over. There is no time to ruminate. You have to move quickly.

Some crawl under the bed and assume fetal position. My friend Jon Alter went the other way a few years ago when he was diagnosed with a form of cancer he knew little about. Non-Hodgkin’s lymphoma is more dangerous than plain old, run of the mill lymphoma. Both used to be automatic killers but have morphed into chronic illness status.

These cancers cannot be cured, but there is at least a fifty percent, five year survival rate. Not great, but better than it used to be. Jonathan Alter was diagnosed with non-Hodgkin’s lymphoma in 2004 and lived to write about it in Newsweek, where he is a columnist.

Jonathan is a journalist and it showed when cancer came calling. The man knows how to ask questions and learn what he feels he has to know. All of us need to do that. Too many hang back and do what they are told. Not everybody is as self-assured or a quick study like him.

Jonathan more or less co-directed his care. He made final decisions on the therapies of choice and where in the U.S. he would go for treatment. In short, he took responsibility for charting his course.

The Newsweek editor and columnist did so in consultation with the best specialists around, but he knew he had to be part of the solution. The more patients participate in decision making, the better the outcomes.

Not everyone has the skill or temperament to be so aggressive. Patient passivity is common and very disconcerting. We show more care and do more checking when we purchase consumer items than in choosing our doctors. Apparently cars and TVs are more important to us than our health.

We just throw ourselves into a doctor’s hands and instruct him or her to cure us. No questions asked. Frequently it is a referral, which means we probably do not know the person. Do we shop around? No. One doc tells us to go to another doc, and we obediently do it.

A doctor tells us to jump, and we do not ask why but rather how high? I do not get it. I know a cancer patient in the Midwest who was frustrated because he was offered too many options. He was angry his doctor did not simply tell him what to do.

What is wrong with this picture?

You learn a lot about yourself with a cancer diagnosis. Are you going to dissolve and be mopped off the floor like spilt milk? Rising up and locking horns with the enemy is less a critical tactic for survival.

A patient cannot be dissatisfied with the doctor but sit back and just follow orders.

Perhaps patients hang back passively for a reason. There is a straight-forward question that needs to be answered. Are patients intimidated, even afraid of their doctors?

Patients often don’t know when to speak or not be heard.

Doctors are not necessarily the most approachable people on the planet. Do you think your doctor wants to hear your opinion about what should be done? Add your comments to this discussion in the Chronic Disease & Disability Exchange.

by Richard M Cohen

Chronic illnesses suck. They cannot be cured. They can be treated many times, and the sick can live a long time, frequently with a highly compromised quality of life. For the chronically healthy who may not get it or want to, here is what you need to understand the chronic illness experience.

The word to use is “chronicity.” Don’t look for it in any dictionary. It is the creation of Jennifer Jaff who we will interview at a later date. Jennifer lives with both Crohn’s Disease and Gastroparesis, both painful diseases. Jennifer is an expert in chronic illness.

Chronicity is almost a state of suspended animation. We may be in remission now. How long will that last and how bad will we become? We may have a good day, but we wait for the other shoe to drop. I feel there is no stability to my health as I have both Multiple Sclerosis and Colon Cancer.

We need flexibility in our lives, in our jobs and other obligations. But people do not get that and quickly become impatient with us. The system is not meant to accommodate the chronically ill. We exist outside the frame work of how the world works.

The system is set up to handle sick people who get better or die. Lines are pretty clear. The problem here is that none of us gets better and only some of us die. So we find ourselves functioning as square pegs trying to wedge ourselves into round holes. Often it is not a good fit, and we don’t get much help pushing.

Then there is the But you look so good syndrome. Even the most serious chronic conditions can be invisible. Others do not see them, and if you look okay, you must be okay. We live in a culture that worships beauty and physical perfection. People are not comfortable with illnesses or disability. They want us to be healthy.

What is odd about all of this is the staggering numbers of people in this country who live every day with one or two chronic illnesses. Current and credible figures now put the number at about 137 million and growing as we age. That is perilously close to half the population. All of us are touched by a chronic illness. If we do not have one, a member of our family or a friend does. There is no escape, but our eyes are shut tight.

I hold the government responsible for the paucity of serious research on these conditions. The NIH budget is frozen at $29 billion as we spend many multiples of that fighting wars overseas. Toxins and microbes and germs that attack in the night to kill or injure are terrorists by my definition.

And I fault the politicians for allowing the debate on healthcare reform to disintegrate into arguments about numbers without putting a human face on the issue. This is you and me, friends. Chronic illnesses and extended life are what is breaking the system.

Wake up.

People do not want to see or deal with the sick. Attitudes have to change to reform the system. What can be done to change public attitudes about the chronically ill? Add your comments to this Discussion in the Chronic Disease & Disability Exchange.