There is a known entity referred to as Phantom limb pain that occurs in the majority of people who have lost an arm or a leg after amputation. It strains credulity that someone would truly feel pain in a body part that is gone.
 
Surely, if you look at a person who has had their arm amputated, you cannot see an arm. In fact, you could speak to a number of people who actually saw the part cut away, torn away, even shred away. This may occur suddenly and randomly in the non-sterile, chaotic and bloody scene of an accident. Everyone scrambles first to staunch the flow of blood from the accident victim. Second to search for the missing part in an attempt to retrieve it, pack it in ice and send it to the hospital with the trauma patient hoping the surgeons will be able to reconnect them. A different scenario occurs if a limb is diseased (gangrene, cancer). In these cases, the amputation is not as sudden. Yet there is still a relatively small amount of time or stated more poetically, “a window of opportunity” to surgically remove this body part in order to save the patient’s life. Here, the location is pristine, clean, orderly and sterile. Blood flow is carefully controlled. The patient is under anesthesia and feels no pain… Until later.
 
The intent of my writing, however, is not to explain complex neurologic mechanisms describing why phantom limb pain occurs. I not only lack the credentials and expertise but my interest in this is strictly personal and entirely non-scientifically based
 
It is been over 2 decades since I was diagnosed with relapsing–remitting MS that morphed as it often does into secondary progressive MS. It is by no means a common condition but there are some things we do know about it. It is the number 1 cause of neurological disability in young adults, typically being diagnosed between ages 20 to 40. There is no cure. It affects the brain and central nervous system that is essentially command central or mission control for your entire body. Symptoms can manifest in an infinite number of ways so diagnosis is often delayed. Other times the disease is misdiagnosed or missed altogether. With every relapse or flare in the early part of this disease, there is scarring of the central nervous system left in its wake. For some it may lead to clumsiness, imbalance, “funny feelings” of tingling and numbness and eventually could lead to paralysis with inability to use an arm, a leg or both legs.
 
There has been significant progress made by the scientific community since I was 1st diagnosed. This knowledge continues to grow and although I doubt I will be the direct beneficiary of this progress, it will undoubtedly make a great difference for others whose lives are touched by this disease.
 
Multiple sclerosis is very similar to other neurological diseases that lead to loss of function in one or more limbs. People who have had strokes, cerebral aneurysms, Parkinson’s disease to name but a few have not had an actual physical amputation of arms or legs. The extremities may still be there visible to the naked eye but their lack of function is all too real. It may occur suddenly as in a ruptured brain aneurysm or stroke. Or it may occur in a sputtering, gradual way with taunting episodes of time marked by stability and even improvement. There may be pain felt in these areas of the body suffered in silence because there is nothing visible to the naked eye. Phantom pain of a different variety.
 
Many of us living with chronic neurologic diseases may find ourselves in situations where we use our bodies as we always did. Much to our dismay, we then find ourselves splayed out on the floor with concerned family and friends looking down on us, straining their own backs trying to get us up and yelling “what were you thinking when you tried to do that?!?”
 
It certainly must be frustrating for them. It certainly is frustrating for us because in our heads, in our cellular memories, we remember being able to do whatever it is we are trying to do with no problem whatsoever. Explanations bounce around us. Mental health professionals call it denial and say that it is to be expected. They tell us it can be a healthy coping mechanism provided of course there is no physical injury to the person or others around them. Medical doctors are quick to refer us back to our neurologist to see if there is a magic potion in the works to improve our function. Sprained ankle? Broken bone? Referral to an orthopedist is arranged. Scrapes, cuts, lacerations? General surgeons, plastic surgeon or an enthusiastic emergency room resident is at the ready to stitch us up. Concussion? Back to the neurologist.
 
And there we are again back at home wondering what happened. We share ice packs with our family member. We need it on whatever body part was injured; they need it for their backs from the physical strain of trying to lift us off the floor and the emotional tension that settled in their neck and back muscles.
 
It occurs to me that just as a person with an amputation suffers from Phantom limb pain, we suffer from a similar condition. Perhaps it really isn’t denial per se. Perhaps we can call it Phantom function (Fantom function? Phantom phunction? For those of you who like plays on words).
 
The unifying feature of phantom limb pain and phantom function can be summarized in one word–LOSS. A person who loses a limb during an amputation suffers a great loss of part of himself or herself. This loss is not only physical. Their minds think they still have that arm or leg. Their hearts mourn the loss. They even feel pain in an extremity that is no longer connected to their body. Science calls it pain emanating from a ghost. No one in the scientific or lay community doubts that this pain is real for the person feeling it. There is probably a very logical explanation for it. I guess it’s confusing how one can believe in pain caused by ghost and yet really not believe in ghosts. As confusing as that may be, it is also not my intent in this writing to argue for or against the existence of ghosts or whether a character as cute as Casper has an evil streak prone to inflicting tortuous pain.
 
I write to ask a simple question. I write with a simple plea.
 
Let’s begin with the question. Is it possible that just as a person who loses an arm or leg feels pain in an extremity no longer there, a person who loses normal function of part of their body feels they could use it as they did before? If the answer to this question is yes, then my plea is to expand our traditional definition of denial to include the possibility of new entities, phantom functions. Denial is used lightly, judged harshly and joked about readily (“denial is more than a river in Egypt”.)
 
It would not be unanticipated to postulate that a person who used their body a certain way for the majority of their life could for an unspecified time feel they still could despite incontrovertible evidence to the contrary.
 
 
After I had been diagnosed with MS for over 10 years, I could no longer safely get out of bed and walk 20 or so feet to my bathroom in the middle of the night. I recall using my arms to swing each leg over the edge of the bed, bearing weight on my legs for a few seconds and pivoting into an electric scooter. I rode the scooter 20 feet to my toilet and went through the same process in reverse to sit on the toilet and in reverse again to get back on the scooter. Only a nightlight illuminated the room. As I was driving the scooter another 20 feet back to bed I remember stopping suddenly. It was as if a bolt of lightning had struck. I felt dismayed, shaken, surprised to see that I was using a motorized scooter to get back to bed. I remember shaking my head in disbelief and asking myself, “what happened here?” I realize some might be concerned that MS had rapidly affected my cognitive abilities but I assure you that was not the case. Had I denied what had been happening for the prior 10 years?  No doubt some of it I had. Yet my mind knew all too clearly what happened. My heart had only begun mourning. I believe that lightning bolt was a form of phantom function. Something deep inside me still could not believe that a function I had taken for granted the majority of my life was no longer at my disposal.
 
Is phantom function painful? Yes. In the same way that phantom limb pain is painful? I don’t know because I have never had a limb amputated.
 
 
It is understandable? Yes.
 
Is it a new politically correct terminology for the often overused or misused term denial? Maybe.
 
 
With certitude I can say Phantom function cost me many real injuries, bruises, stitches, casts and visits to my general Dr., neurologist, orthopedist, plastic surgeon, physical therapist, occupational therapist, psychologist and psychiatrist. And that seems like a lot from a ghost. Especially since most people don’t believe in ghosts anyway.
 
 
 
 
 
 
 
 
 
 

For me, the hour was 11am on March 23,1988. My life and the lives of those who care about me were forever altered at that moment. Please view the video above from the National MS society to learn about MS. Much has been learned since my diagnosis over 20 years ago;new treatments for symptoms as well as agents to slow progression are available. THERE IS STILL NO CURE.
Help us increase knowledge and funding for MS!

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)