Every year, heart disease takes the lives of over half a million Americans, and it remains the leading cause of death in the United States. This devastating epidemic leaves no one untouched. This month, we remember the steps each of us can take to reduce the risk of heart disease and recommit to better heart health for all Americans.

While genetic or hereditary factors play a part in many instances of cardiovascular disease, high cholesterol, high blood pressure, physical inactivity, obesity, tobacco use, and alcohol abuse are major risk factors that can be prevented or controlled.

For more information please check the following link.
http:/www.cdc.gov/HeartDisease

COPD Affects more than 12 million Americans. This diagnosis includes illnesses such as chronic bronchitis and emphysema. These illnesses obstruct the passage of air through the bronchial tree and lungs. To learn more visit http://www.lungusa.org/

We look forward to hearing from you and hope you will check in often for new additions to our blog.

At times, our mission has seemed daunting yet we believe if we can make a difference to even one person facing life with chronic illness and physical disability, the ripple effect will reach and change many more.

Let me leave you for now with one of my favorite quotes:

Thousands of starfish had washed ashore
and a little girl began throwing them into the water
so they wouldn’t die.
“Don’t bother dear” her mother said,
“It won’t really make any difference.”
The girl stopped for a moment and looked at the starfish in her hand,
as she threw it back into the water she said
“it will make a difference to this one.”

Several months earlier, sitting at the same desk, struggling to pen a letter explaining to patients I could no longer be their doctor, I wept at the enormity of my loss. An illness they had all known about was forcing me to give up direct patient care. Describing my sadness was easier than spinning the facts to find something, anything, good to say about what was happening. Quoting a Sufi saying, “When the heart weeps for what it’s lost, the soul rejoices for what it’s gained,” I confessed I had wept many tears, but my soul had yet to rejoice. Thanking them for the privilege of being their doctor, I shared plans for remaining productive through teaching and helping others who live with chronic illness. As a doctor with a specialty in Internal Medicine, I had been caring for patients for 15 years. Now, that career was over. I was 41.

Over a decade has passed now; I recognize accomplishments and success achieved since I said goodbye to my patients. I founded a successful nonprofit organization and a program that has taught thousands of people about life with disability. Although I have had many moments of rejoicing, I still weep for the loss. I suppose some might say I have not achieved Kubler Ross acceptance. I would agree and take it a step further–not sure I ever will.

Arrival of an illness is usually heralded by yellow, blinking warning signs. As a physician, I was trained to help patients identify and interpret them. Information accurately and empathically relayed would help them navigate an uncertain diagnosis or frightening illness. However, this is often not the case when the doctor is also the patient. At least it wasn’t for me.

Blurriness and transient blindness in one eye was probably just a corneal abrasion. Numbing pain as if giant blood pressure cuffs were pumped high as they could go in both legs was probably just a slipped disc. This is an embarrassing admission since I consider myself an excellent diagnostician. The power of fear and denial trumped diagnostic skill. Yet the doctor in me prevailed and I surrendered to the role of patient long enough to be checked out by a respected physician. After days of tests culminating in a deafening ride in an MRI capsule came an official diagnosis. It was one I had allowed into the outermost orbits of consciousness. This older, wise and kind neurologist gently said, “This is multiple sclerosis.” As I recall, he said it in a near whisper. Yet all I heard in a booming game show host voice was “Alicia, this is your life.”

In the years that ensued, I was driven to prove my illness would not limit me, much less define me. Denial became a favorite traveling companion. Under no circumstances would I ever need to use a cane, crutches, or a walker. But falling has ways of lifting the veil of denial. The first is always the hardest to forget.

As I entered a hot muggy parking lot, my right foot began to remind me. First tingling and squeezing then, lack of all sensation followed by a slight drag. Familiar sensations from short-circuiting nerve signals my brain and spinal cord were trying to send my foot became louder with each step. A grate slightly twisted and lifted off the pavement, my foot caught and tangled–a slow motion lurch forward–an attempt at an outstretched hand and the thundering sound of bone on concrete. My raw, scraped skin, black eye swollen almost shut and stitched lip in the mirror made me a stranger to myself, but reality is hard to ignore when it stares you in the face.

The sound of crutches and walkers clanging in advance of my arrival meant I would forever forfeit surprising or sneaking up on anyone. This eventually seemed a small price to pay in return for avoiding painful injuries from falling. And there were other aspects of my illness I could still hide from others and from myself. The disease might have succeeded in imposing physical limitations but it would still not define me. I could still see patients and teach medical students. If things took a little longer, I would spend a little longer. Under no circumstances would I ever need to use a three-wheeled scooter, much less a manual wheelchair or a power chair. Denial, my favorite traveling companion, was back.

When I could no longer walk to make rounds or drive my car, denial stepped aside long enough to convince myself there were unexpected plus sides. My patients would appreciate if I saw them while sitting in a scooter because I would be at eye level with them. My efficiency would increase because rounds would take half the time at scooter speed. Carpooling with colleagues would build camaraderie. Or even better, learning to drive with my hands would help keep them coordinated and strong. But when called upon again, denial would step back in until the day when the familiar music and dance had to stop. I sat in my still and silent reality.

During a visit to another neurologist, I shared a sinister symptom that appeared a few weeks earlier interfering with my ability to confidently perform physical examinations. Loss of sensation on the tip of each finger of both hands led to uncertainty and trepidation. Was I missing a bump, lump or alterations in rhythm and intensity of pulses? My hands were trained to feel, to probe, to explore, to keep a heart contracting, to stop an artery from bleeding, to know if a part of the human body is too hard or soft, too irregular, too hot or cold. My hands held patient’s hands when delivering very bad news. My hands caught a slippery baby as it left its mother’s womb. My hands were doctoring tools that would not be taken from me.

Hunched over a stack of papers, his eyes avoiding mine, the neurologist spoke in a voice lacking emotion. I heard I was “totally disabled from my profession” and should send in “whatever papers needed filling in.” I had not gone in looking for curing but a little caring would have gone a long way. When I left, the numbness in my hands and legs spread to surround my entire being. Leaving the office, I rolled out onto a busy rain slicked sidewalk. It’s a difficult task to maneuver controls on the wheelchair and hold an umbrella, so the gentle steady rain fell on my face intermingling with my tears. When I looked up at the gray sky, I felt blanketed in despair. What would I do now? Who would I be now? Could anyone hear me? Was anybody listening? No answers.

For a long time after this day, when anyone asked what I did, I replied I used to be a doctor. And when family or friends were within earshot, they would either mercilessly berate me or gently remind me I still was a doctor. As it turns out, all of us were correct. Although I could no longer be the kind of doctor who lays on hands as part of the healing process, there were many things I could do and did. Although I thought my hard work was over, it had barely begun.

Yes, I had worked very hard. I worked even harder when parts of my body failed to work. Disability, to me, signified a need to prove my worth. Prove it with a vengeance. Obligatory waiting period to file for Social Security disability benefits be damned. A waiting period for some is a trial period for others. I would start trying on different doctor hats. Educator? Check. Scientific policy and guidelines author? Check. Insurance company consultant? Check. Medico-legal advisor? Check. Founder and creator of nonprofit organization? Check.

When the time came to finally call Social Security administration, I was more exhausted than ever and just as sad. Sensation and coordination of my hands never returned. And although the other doctor hats fit and some were even comfortable and attractive to me, I was forced to give up the one that fit the best. I don’t believe that kind of hurt ever fully goes away. Denial, bargaining, depression and anger are all familiar friends. Acceptance remains an elusive, mysterious stranger.

(originally written November 16,2010)

Of course, another part of the myth is that these bodies will not age, they will not succumb to accident or illness and they will never die. The myth continues in the belief that we have control over these perfect bodies. If we eat the right things, exercise, take vitamins, start a new hobby, spend quality time with loved ones, meditate, see our doctors, get flu shots, mammograms, prostate exams…just fill in the blank with your prevention behavior of choice…we will remain healthy.

The danger in this “perfect body” fallacy occurs when we blame people for illnesses or accidents that shatter the ideal. When we muse about if they only acted differently, the illness or disability would not have occurred, we are blaming the victim. This opinion serves only to alienate and separate people who most need our understanding and compassion.

Equally dangerous is our idealization of doctors as knowledgeable heroes who, should something ail and threaten the perfect body, can “fix” it. Harsh reality shows us that many things cannot be “fixed.” Aging, illness, accidents and death are part and parcel of life. People living with chronic or life threatening illness and disability faces on a daily basis; these realities. These people often look different. They may talk or walk differently. They may not move at all or only with the assistance of complex hardware (crutches, wheelchair, walkers, oxygen tanks etc.). All of these things may cause able-bodied people to feel uncomfortable, to divert their gaze or conversely to stare intently for prolonged periods, as they are faced by the reality that the perfect body is a myth and that they too may be struck randomly and suddenly as well.

All of this contributes to the ill and disabled feeling inadequate like damaged goods. Their self-esteem takes a hit. They perceive that those around them reject them. They reject themselves. They are stigmatized, feel shame and guilt. In essence, they do penance for a sin they did not commit.

In her book, The Rejected Self, by Susan Wendell (1996) eloquently describes this difficult self-awareness:

“Most people are deeply reluctant to believe that bad things happen to people who
do not deserve them, or seek them or risk them, or fail to take care of themselves.
To believe this as a general proposition is to acknowledge the fragility of ones
own life; to realize this in relation to someone one knows is to become
acutely aware of ones own vulnerability.”

(originally written July 2003)

Now imagine being in a wheelchair, you cannot move your legs, you cannot fit down any narrow aisles, you have on diapers just in case because there is no bathroom you can enter.

No one seems to know what to do with you or your accoutrements. No one knows how your scooter batteries connect, disconnect or whether the material they are made of can blow up the plane. You surrender your scooter and a strange, narrow wheelchair with rigid and deep armrests and equally rigid, unreleasing foot rests become your new legs.

The first stranger pushes and steers you feet first into an elevator, apologizes when he hears your toes bang the back wall.

Now you surrender your belongings to another stranger who you trust will not run off with your laptop and medicines and extra diapers as she puts them on the X-ray conveyer belt.

A third stranger frisks you to be sure you are not carrying a concealed weapon (diapers can be lethal) since my metal chair will set off the alarm.

Now you sit alone in a strange wheelchair. Your carry ons are coming through but no one is there to retrieve them. You need another stranger to push you to the gate but they say it’s not their job. You wait wondering if you will have time to go to the handicap bathroom before boarding or just how absorbent are these diapers?

Alas, a fourth stranger to escort you to the gate.

You arrive at the gate and the fifth official looking stranger scowls and looks at his watch. Imagine that you may actually inconvenience them and delay takeoff. You wonder if he read the internet site that estimated on time arrival for this airline is at 42% – even without you tying up the works.

He asks if you can get out of the chair and walk to the plane.

Does he think you ride wheelchairs for fun, or because you are lazy or doing an Inside Edition expose on his incompetence? You politely explain you cannot walk. With a deep sigh, he picks up the intercom and asks for an aisle chair. You cringe, your shoulders tense and hug your ears…Oh noooo Mr. Bill, not the aisle chair!

The aisle chair is a glorified hand truck used to haul boxes in and out of warehouses. The chair width is approximately 10-12 inches or significantly smaller than the average disabled derriere. The arm rests are as wide as the seat. It is a good thing they feed you small portions on planes or if you got on in this thing and ate anything at all, you might never get out. You are strapped in as if you were parachuting- strapped diagonally at both shoulders, around he waist, around the thighs and legs. Thank heavens you do not have issues with bondage- but what of those that do?

The transfer to the airplane seat is an exercise in your ability to fend off “helpful” hands who try to lift you underneath your armpits as if you were a 40 pound child and seem shocked when your lower body does not cooperate. Or the “helpful” hands that try to bend your knee and hip joints in directions they were never designed to bend in. They pull and push and squeeze and twist and stretch your body in order to get you seated, restrapped and ready for a timely takeoff.

Fear of flying takes on new dimensions when you are disabled and entrust your well being to untrained baggage handlers (renamed “special services representatives), well intentioned for sure, dangerous nonetheless.

It is not “speedy” because you have to arrive early so they can fumble through the process and board first. Then you wait and deplane last.

It is not freeing unless you think that being tied up like Houdini (when you are not Houdini) is liberating.

You leave something familiar and in that familiarity, there is safety to arrive someplace new and in the unfamiliar, there is fear.

If you drink or eat any of the available foods, you run the risk of not being able to reach an accessible area to eliminate what you have ingested- so most often you do not drink and arrive at your destination dry, empty, barren.

The plane may soar and defy gravitational pull, your body certainly cannot do so and you seem to feel the “drag” and the “lag” to a greater degree.

And what to do in the event of turbulence and imbalance? You imagine an emergency landing and wonder if anyone will try to pull you out, or how they could roll your spastic, heavy, limp body onto the inflatable slide. Getting into a lifeboat would also be an interesting challenge.

Never mind, the plane won’t crash and if it does you probably won’t make it.

Then, just maybe, you will experience soaring, freedom, speed and cottony clouds. But on this earth, we have a long way to go, before the skies are disabled-friendly.

I made a decision today. Or, I should say, the Social Security administration made it for me. I am retired. I even have a Medicare and Blue Cross card that says 65 special. Now, that is special… especially since I am only 45.

I am also physically disabled. I never knew that being disabled and being retired were one and the same. For me and many others, they are not. It does, however, say a great deal about the value society places on these two groups. Just as elders may feel lost or useless when they are forced into retirement (early or not), I experienced a similar sense of loss and found it hard to define what I did and thus, who I was, if I could no longer practice clinical medicine, see my patients and teach residents.

The more I gave this some thought, the word re-tire seemed an oxymoron because I did not want to be tired again. Nor did I want to re-tread these tires of mine. In fact, it would be welcome to stop the daily routines that made me tired. So, it occurred to me, I do not have to re-tire; instead, I will un-tire. Some will call this merely a question of semantics. I call it a valiant attempt to see the glass as half-full instead of half-empty.

What will I do? What will fill my days and nights? How will I answer the ubiquitous question, what do you do?

I wonder how many people can answer that question joyfully. Is a title impressive? Is an office size or location meaningful? Does “what do you do for a living?” really provide us with a view of who the person on the other side of the question is? Granted, sometimes the words are perfunctory and the response is not important to the person asking. But what about the times it is?

If the questioner is really interested in learning something about the other person, more valuable inquiries would include: Who are you- who or what is important in your life. What makes your heart sing, your mind expand, your spirit soar?
Whew- what cocktail party conversation that would be!

The other what do you do for a living question is really asking, how do you pay your bills? I venture to say that if what makes your heart sing etc. is also what pays your bills you are in the luckiest and probably the smallest minority of the population.

So, if you are officially “retired” before your time and feel your sense of self fading as you insert the Medicare card in your wallet, and someone asks what you do, I challenge you to tell them who you are and that you are “un-tired.” Explain that what you do for a living is not necessarily what gives you life or what sustains you. You may actually feel fortunate that you are untired before your time. Who knows, you may even find your cup overflowing!

As Abraham Lincoln said,
“It’s not the years in your life that count. It’s the life in your years.”