Posts Tagged ‘Family Members of Lyme Disease’

Momenaide

// August 11th, 2010 // 5 Comments » // Eric's Blog

Today was a very big day in the life of any person who has Lyme disease if they are so lucky to find a Lyme Literate MD (LLMD), the very first appointment.  10 1/2 months ago was my first appt.  I read something my LLMD had written in a book that said how so many of his patients would just cry with relief when they finally saw him because for the first time they were being validated, their disease was real and it was something they could treat.  I was no different.  In fact I think I tend to cry in almost all my appointments with my LLMD.  Some days in relief or excitement, others in frustration and despair.

But today I was the one there for moral support as my Mom had her first appointment with her LLMD (who also happens to be mine).  What kills me is that she tested positive (by CDC standards) almost 2 months ago.  At least 2 of her Dr’s, including the one who ordered the test, have yet to even tell her she has Lyme disease.  (She knew enough to ask for copies of her test results.)  It’s frustrating that even this far in all the gains we have made in Lyme awareness and education, for some Dr’s it still doesn’t even warrant an attempt at addressing it.  If she were not an informed MOLE (Mother Of Lyme Enraged – I just made that up right now, not bad for 12:30am!) then she wouldn’t have known enough to get the test, or ask for the results.  She would have been just another one of us lost in a system that doesn’t pay the attention and respect to this disease that it deserves.

Luckily for her she didn’t go on with life thinking she was fine and was able to treat this proactively, instead of reactively like so many of us have been forced to do.

When I first went to my LLMD appointment I knew very little about the Dr, beyond referrals and info I’d found on the Internet.  I knew nobody who saw this Dr.  It was nervewracking for me, and as any of you who have seen an LLMD know, the costs quickly rise into the thousands before that first appointment ends.  I was blessed because that same day I met someone on a Lyme forum online who not only saw the same Dr as me, but lived pretty close.  10 1/2 months later and she’s a wonderful friend, support and companion on this crazy Lyme journey.

So I can only imagine how my Mom must have felt sitting in that waiting room almost a year ago for 3 1/2 hours wondering what was being done, said and determined while I was with the Dr.  I’m sure she questioned the cost, and what prognosis the Dr would have for me, after seeing me go downhill so rapidly it was hard for anyone to keep up with how sick I got so quickly.  I went from struggling with problems as the Lyme was worsening in my body to being completely debilitated by the disease in a matter of days.

A very wise and wonderful mother once gave me some advice when I eventually found myself a 37 year old man who had lost just about everything, ending up in my mother’s living room, at the mercy of my family to support me as I got the life saving treatment I desperately needed to get my life back, let alone live.  She said a mother is only as happy as her unhappiest child.  My mother exemplifies this statement.  So now I can only imagine what those 3 1/2 hours must been like for her.

For me, I felt anxious, nervous about the prognosis, concerned about the things he’d find or decide about her condition, worried that it would all be overwhelming to her during her 3 1/2 hours upstairs.  And I knew what she was going through, I knew she was in the care of one of the best people possible for Lyme, nothing in the visit was unchartered territory to me.  But yet I spent the 3 1/2 hours full of concern and anxiousness at the results of her visit.

It reinforced once again the notion that the families and loved ones of Lyme go through hell.  Yes, it can’t compare to what may physically be happening to those of us who are sick, but the mental toll on our loved ones is unrelenting.  As I am now a “family member of a Lymie” instead of just a “Lymie”, I can see even more clearly now what I already knew, that the suffering our illnesses causes to our loved ones is beyond understanding for those of us who are so focused on just being sick.

When all was said and done Mom survived her first LLMD appointment (without any tears…that I know of!)  One of my IV nurses came down after about 2 hours and let me know they were taking good care of her.  What she didn’t know was Mom was texting me from upstairs letting me know the same thing.

She’s beginning her journey of treatment now, but the good news is she’s going after the Lyme, instead of the Lyme coming after her.  Thanks to so many of you who sent prayers, good wishes, good karma, kind and healing thoughts her way today.

A year and half ago none of us knew what we were in for when that first Dr mentioned MS as a possible explanation of all my problems.  But here we are now, on the right track and in the exact places where we should be at this very time.  There’s purpose behind everything and this is nothing different.  We now join the ranks of hundreds and hundreds of other families who all battle Lyme at the same time.

Hope Is Also A Four Letter Word

// July 4th, 2010 // 8 Comments » // Eric's Blog, LymeBites Blog

For those who really know me, you know that of all the 4 letter words I’ve used with my Lyme disease, hope has not been a regular one.  At least not until I can sit back and reflect on my situation.

This past week has been brutal for me on many levels.  In order to really show what Lyme disease is like, I’ve decided to be as honest as possible about my journey.  This is one week where I actually don’t feel comfortable in being as open and honest as I usually am (about everything in my life).  So I’m going to take it from a different angle.

I’ve spent a lot of time this week talking to, listening to, and helping others suffering from this disease who find themselves in a strange world dealing with family.  I will again go on record as saying I have an amazing family.  Never once have they doubted the validity of my illness.  Never once have they complained about my fits of Lyme rage, my depression (hey, no matter how optimistic you are, this disease will drag you to hell and back, depression is going to be part of the disease), the cost of treatment or how much I’ve disrupted everyone’s lives in trying to get my own life back.  So there are times I feel hypocritical trying to help others who go through these problems with their family members. 

But while so many people were coming to me this week in desperation over their parents, or their children, I too was embarking on a week of my own problems that my mother and I had to deal with.  (And in the process other family members get dragged into it.)  This is one of those things I’m not ready to be an open book about, but I want to point out that while I continuously praise my familial support system for all they provide to me, it doesn’t make it a perfect situation. 

I am 37 years old.  I moved out of my mom’s home at the age of 18.  Other than a few months here or there during summer vacation from school, I’ve been on my own since then.  My mother is a single woman (and Italian, which adds spice to more than just our meals, we have spicy personalities too).  Other than me, she has primarily lived alone most of her adult life.  I am a chip off the old block.  From looks, to mannerisms to our love of the movie Mamma Mia, I am a version of my mother.  Sure, there are parts of my father in me, but as he was not man enough to be a father, everything I am comes from my mother (except my exceptionally large lower lip, that I thank Dad for). 

So we are two stubborn, independent yet easy going people.  With every year I age I find myself turning more and more into my mother.  I think we all reach a point in our lives where we realize we have become our parents.  Personally I think it’s an honor to take after such a remarkable woman. 

But the situation Lyme disease puts us in is an ugly situation.  All the way around.  I don’t mean for her and me, but for the thousands and thousands of other people fighting this fight.  This week as we were having our own issues, I really thought about those who don’t have the support system I have to begin with, and I realize how difficult the situation must really be for some people.

It seemed that as my own issues were taking place this week, I began to be inundated with people from the Lyme community asking advice on how to deal with their families and their illness.  That’s when it really began to dawn on me once again, how lucky I am for the friends and family I have.  But beyond that, the fact that I really don’t know what to say or do to help these people who find themselves in these situations. 

While my family refers to me as a “Lyme celebrity” and is constantly praising me for all the hard work I’ve put into Lyme awareness, this website, and my work with the Lymenaide team, there’s another whose family complains about all the time they put into Lyme awareness, Lyme projects and the cost that goes along with it.  (For those who don’t know, the 4 of us heading up the Lymenaide team are all doing this out of our own pockets.  3 of us are too disabled by Lyme to work, the 4th has a family to support, and is also using her own resources and time to further the cause.  This isn’t a hobby for any of us, something we do after we get home from work (with a paycheck), but something so important to us that we pay to do the things we do just to further the cause and help save people from the devastating effects of this disease.) 

So many adult children are suddenly at the mercy of their parents again, years and years after “leaving the nest”.  Many of us have boxed up our lives, our items of comfort and security, and placed them in storage while we return to the nest.  Most of us have no income and are unable to work because of how sick we are, so we depend on our parents for the simplest things, from dental floss to life saving medication.  No matter how strong your support system, it is brutally difficult for an adult to deal with the loss of independence they once knew.

That all goes without saying, being the situation many of us have ended up in due to this insidious disease.  But then there’s the other side.  The part of the situation that really does go without saying, the support system. 

I want you to think of the parent, working towards their retirement, already retired, or still raising your little brothers and sisters.  The child that went off on their own at some point in the past becomes sick.  That alone is a heartwrenching experience for a parent.  I can only share my point of view as an owner of two cats, I can’t understand what that feels like for a parent, but I can be sure it’s awful.

Suddenly it goes from being sick, to being thrown into a disease that is truly a nightmare.  From the medical side, to the political side, to the people who say what they have isn’t real.  It’s a struggle to get diagnosed, and an even bigger struggle to get treatment.  Think of how helpless you felt as the one who was sick, then realize that feeling of helplessness has to be ten fold for your parents. 

Suddenly, a disease they probably never knew could kill someone, has completely disabled their child.  The child they raised into adulthood, healthy and able to live a full life.  Maybe this child is now married with kids of their own, maybe they are fresh out of college, or maybe they are single, 37, living in Albany and working for the state with 2 cats (that was me, BTW).

So disabled now they can’t work, they can’t have an income.  Disability is next to impossible with Lyme, and it’s a long and tedious effort.  Suddenly their bank accounts get drained, their credit card bills pile up and a time comes when they are forced to give up their home.  Perhaps because of financial reasons, or maybe they can no longer take care of themselves.

What must it do the parent of that child to see everything they built, and all their hard work of getting them safely into adulthood come unravelled all because of the bite of a tick.  I can’t fathom what that is like, but I can only imagine that for a parent it’s like having your life suck back in on you.  (That is the only way to describe with words what I think it must feel like.)

And that’s just the beginning of when things get bad.  I know for my story, I spent 9 months living alone, sick and unable to leave bed many days, but I was still “on my own”.  (Okay, so Mom delivered groceries and meals at least once a week, but I was still living independently.)  Then as I began the worst part of my treatment, I was suddenly in the same house with her day after day.  Those first 9 months she didn’t hear me dry heaving every day as I dealt with the spins and sickness the antibiotics caused me.  The first time she experienced that first hand, she later told my Aunt, was the moment so much of her hair turned gray.

Until a parent witnesses first hand what happens, they can’t begin to understand the gravity of this disease.  And when they are finally confronted with the day to day happenings of the disease it must be very disconcerting for them. 

Add to the mix the fact that the parent (or parents, as a child of a single parent I automatically refer to the singular, but I know that there are many duos out there experiencing this together with their child) now suddenly has to support their adult child, and it makes things even more confusing.  Most of us cannot get our health insurance to cover our treatments and Dr. visits.  No parent is going to let their child suffer if they can provide the treatment needed.  While I will be writing articles about the guilt that causes to a child for probably the rest of my life, I will also try to understand what that does to a parent.  Most parents would give their last cent if it meant healing their child, but it also comes at a cost for them.  They spend their entire lives trying to teach you to be responsible and be able to take care of yourself, and suddenly they have to go against all of that to support their child and bring them back to health. 

Every day I hear stories of families who lost their homes paying for treatment.  Familes that have 3 or 4 members all infected with this disease, all needing treatment.  The one thing that is clear is that there is no point that is “too far” for the family.  They will use every avenue available to provide the care that is needed.

Then beyond all those specifics is that mere fact that our parents want what is best for us.  They want us to lead happy, successful and full lives.  This disease robs us of happiness, success and a full life.  All that they hoped and dreamed for us shatters, sometimes overnight, when this disease grabs hold of us. 

We are all so wrapped up in what we are losing, what is being taken from us, what the disease has done to us.  We can spend our entire illness at one big pity party.  We all need to deal with the feelings and issues, but we also have to move on.  But sometimes the expression “can’t see the forest through the trees” sums up how we face our own illnesses.  The forest is Lyme disease, the trees are our families (and caregivers).  We are so consumed with the disease itself we don’t realize how everything we go through happens to our parents too.

I’ve used 6 different personal stories I’ve been involved in this week, including my own, to put together the thoughts in this post.  Please know they are not directed to any one individual or family, but my thoughts on the experiences I’ve heard about and been involved in this week with so many who are so trusting to come to me with their situations.

So for those who don’t have Lyme, and don’t have a family member with Lyme, take this moment to think of those who are pulling those of us infected with this disease through our illness.  Turn off your feelings of pity, sadness or despair for the sick ones, and turn on your feeling of gratitude, support and hope for those who are doing everything to keep us alive.

For those who suffer from Lyme disease: as hard as it is, take a few moments and step out of the pain your body burdens you with, forget the financial problems, the loss of relationships, the loss of the things you love so much, and think about how all those things affect the ones that are picking up the slack in what we can’t do for ourselves.

If you are one of us adult children who have to depend on your parents years after leaving home, thank God that you have a family to do that.  Don’t let the guilt consume you for being loved unconditionally.  Remember those who have no one, and the fight they have before them without their parents there to help them. 

I know not all of us who are sick have to return to live with our parents.  But many of us do.  The things in this article may not apply to everyone, but I hope the principles will touch everyone to help them see both sides of this disease, those who suffer from the infection, and those who suffer because of the infection.

On this 4th of July as we celebrate a day of independence, when so many of us can’t celebrate our own independence from this disease, please take the time to celebrate those who are there to pick up the slack for us.  Please remember the parents who fight tirelessly, years after they thought their “job” was done, from cleaning up vomit to learning how to properly clean a PICC line dressing.  Don’t just feel sorry for those of who are sick, but feel sympathy for what our sickness does to our loved ones. 

Thank you to all those parents out there who would go to hell and back again (and many are) just to help their children get their lives back.  They are the true heroes in this fight.

Anger And Outrage – From A Non-Lymie Perspective

// July 4th, 2010 // 6 Comments » // Guest Authors, LymeBites Blog

As I write this, I can’t help but be distracted by how lousy I feel. My head feels like it’s being held underwater. My stomach is quivering. I am absolutely exhausted. I spent most of today in bed, in a deep sleep, waking up long enough to wipe the sweat off my face and neck with the sheet, adjust the pillows and turn over to my other side. The pain started last night…first in my shoulders, then growing until I could feel burning in every single part of my body. Each individual joint in my fingers, my elbows, my toes, my legs, my knees. I wanted to scream and cry, but I didn’t have the strength or energy to. I just lay in bed, as still as I possible could, waiting for the pain to subside.

   Some of these symptoms may be all too familiar to you. The joint pain, the nausea, the fatigue, the brain fog…all common symptoms of Lyme disease. As I sit here, I am completely aware of my discomfort…but I consider myself lucky. I know what is making me sick. I am currently going through withdrawal from a commonly prescribed antidepressant. I’ve been taking the drug since October, to manage symptoms of anxiety and depression, and also to alleviate insomnia. Unfortunately, the mental health clinic which has been managing my care has recently decided to close my case. Since I am currently uninsured, I cannot afford to regularly see a psychiatrist. I owe my primary care physician a few hundred dollars at the moment, and he is not comfortable with prescribing drugs for mental health issues. I figured it would be better to try and ween myself off of the medication; to find other means of managing my anxiety, at least until I can find someone else to take my case.

   As much as it absolutely sucks to feel like this right now, I know that it will end. I have had to go off the meds cold before, when I ran out and had no money for a refill, or couldn’t get in to the doctor’s office soon enough. From those experiences, I know that full withdrawal lasts about 2 weeks. This time around, I have gradually reduced my dosage. I’m hoping that doing so will reduce my withdrawal symptoms, as well as the length of withdrawal time.

   This has me thinking, though, about a few things. I can’t imagine feeling like this most of the time. I’m struggling right now to continue writing despite the migraine growing from above my right eye. I’m frustrated that I missed spending time with my friend before he had to leave for work this afternoon, because I could not stay awake. As many of you know, it is difficult enough to be sick, without having to deal with the additional angst regarding how being ill has impacted the rest of your life, and the way that you live it.

   I’m also thinking about the health care industry. Industry. That word seriously bothers me. As if our doctors are nothing more than used car salesmen, looking to make a quick and easy sale that throws the largest profit their way.

   A few weeks ago, I was watching A&E’s “Intervention”, a show about addiction. They featured a woman named Brooke, who was addicted to painkillers. When she was 17, Brooke woke up with a rash and a high fever. Two weeks later, she woke up screaming, paralyzed with crippling joint pain. The doctors diagnosed her with Rheumatoid Arthritis, and prescribed a number of pain medications and anti-inflammatories. Her condition continued to get worse, rather than better. She enrolled in college only to have to drop out because she was so ill. She started to see a number of doctors, mixing prescriptions in order to manage her pain. Nothing seemed to work. It took Brooke two hours just to be able to move in the morning. She could barely walk. Her hands and arms twisted into claws. On top of the debilitating illness, Brooke was cut off from most of her family. Her siblings resented her for the attention that she received from their parents. There was a rift among the family members about how to best deal with Brooke’s illness and her addiction.

   It was clear to me that Brooke’s illness had been mismanaged. I figured that Rheumatoid Arthritis was a misdiagnosis. I could not comprehend why the doctors would diagnose her with RA, a syndrome with no known cause, than to consider Lyme disease…especially considering that she had the tellmark rash, fever, and joint pain. Brooke’s mother revealed that she had done her own research, and suspected that Brooke actually had Lyme disease. She took her daughter to a doctor’s office, where she tested positive for Lyme. Despite the positive test results, the doctors maintained that Brooke had been diagnosed with a condition which explained her symptoms, and that the regimen of pain medication should be continued. These medical “professionals” completely ignored the clinical test results. They refused to even acknowledge the existence of Lyme disease. They simply repeated that she had crippling Rheumatoid Arthritis.

   I was infuriated, to say the least. The addiction specialist who was brought in had to explain to the family that  Brooke’s condition was real, and that her pain was real. It wasn’t so much that she was abusing her medication to get high. Rather, she was trying to get rid of her pain using a treatment that just didn’t work. The family was riddled with guilt for the way that they had treated Brooke, because they did not understand what was really going on. Brooke was sent to a facility where she was treated for advanced Lyme disease, Rheumatoid arthritis, and addiction. While she was in treatment, the doctors had to remove parts of her shoulder and hip, which had been destroyed by the Lyme bacteria. As far as I know, her illness is still being managed.

   I am one of many who can’t help but wonder how things would have been different if she was diagnosed with Lyme disease within those first few months, following her initial symptoms. What if she had been able to find a Lyme Literate Medical Doctor when she received the positive test result? What if she had been able to receive the proper treatment?

   It’s somewhat of a moot point, because we can’t go back and change the past. We CAN, however, change the way that people view Lyme disease. We can increase awareness. We can demand more from our doctors and our politicians, to ensure that people receive the care that they need and deserve.

   It can be hard to gather up your energy when you’re sick…but somehow, we still manage to get angry. And that’s okay. That can be a very good thing. We need to get a little angry, and to demand that healthcare go from being this “industry”, which treats people as a disposable source of income, and return to the service that it was always intended to be. In the Lyme community, we’ve learned how to be resourceful. We rely on one another to find LLMDs who are willing to do what needs to be done. At the same time, we protect the identities of our LLMDs, to ensure that they remain able to practice. What else can we do to ward off the attack from those who refuse to believe that chronic Lyme exists? To demand proper care from those who view patients as interchangeable? What is it that you do to positively channel the anger and the outrage?

A JOURNEY THRU LYME ©Karen Angotti

// June 30th, 2010 // No Comments » // Karen Angotti Writings, LymeBites Blog, Mother's Corner

(the following is copyrighted and used with permission)

When Lisa Marie was about two, she asked her daddy where the bus traveling south down Highway 101 was going. Now, she thought she already knew the answer to that question because the only place that she saw buses very often was at our church. So, when her daddy casually replied, “Oh, maybe L.A,” she chortled at the joke she was sure that he was making. You see, she had also heard of L.A. and lots of other big cities. Daddy flew to them all the time in his job as an airline pilot. So, quickly joining in the fun, she shrewdly joked back, “Oh, ho, maybe Tokyo!” Much to her delight, her daddy thought that her joke was hugely funny. Within a couple of years, her knowledge had expanded to include the idea of the Pacific Ocean and the location of Tokyo far across that ocean. This story reminds me much of myself and my ignorance at the beginning of a journey with Lyme disease. But I have come a long, long way. I have come a long, long way since I first asked a lady about a drug called “Rockafin.” She asked me to repeat it a few times then burst into gales of laughter as she gasped out the correct pronunciation, “Row-se-fin” (Rocephin). I had just about mastered Ixodes dammini, too, when the powers that be announced that it was no longer a species and, instead a tongue twister called Ixodes scapularis took its place. Fortunately, the Ixodes part remained the same and soon I was belting it out with the best of the entomologists because part of the mystery had been solved, the mystery of how we came to be ill with Lyme disease when we did not have “the” tick, the tick that causes Lyme disease that is. Borrelia burgdorferi was another quite onerous task to learn. I really thought that these scientific types surely did enjoy naming things with long names until I learned that it was named for Dr. Willy Burgdorfer who discovered the spirochete (college biology had put me on speaking terms with spirochetes). I was so grateful to him for his discovery that I happily learned the name but it would have been a lot easier if he had happened to be a Smith or a Jones. Still, somehow, I do not think that Borrelia jonesi or smithi would have quite the same scientific ring. And even something that simple looks awfully funny italicized and with an i on the end. Erythema chronica migrans was improved considerably when most people started deleting the chronica. Though just looking at it still made me think of migraines. Personally I prefer the abbreviated EM rash or the even more descriptive and comprehensible bull’s eye rash. In a short amount of time I began to comprehend that ELISA was not a character in Uncle Tom’s Cabin and I can even spit out Enzyme Linked Immunosorbent Assay. Nor is the Western blot some test done exclusively in the Western section of the country. Then after a couple of years of these totally maligned antibody tests I heard about the superduper PCR/DNA (polymerase chain reaction/deoxyribonucleic acid). You will note the better the test is supposed to be, the longer the name. This being B.O.J. (Before O.J.) not many people had heard of PCR’s or DNA testing. But through perseverance I discovered that the two are used almost synonymously and should soon replace the impossible-to-reliably-perform culture. There is one word in this maze though of which I heartily approve, a little four letter which shares the reputation of many four letter words, a word that one must purse one’s lips exactly so to say, the word bleb. I must congratulate whoever was instrumental in naming this appalling attachment to the spirochete whose function no one can quite explain, for the name personifies all that I feel about Lyme disease. How can you say bleb without feeling like you are spitting or screwing one’s face into the shape of a wrinkled prune as though smelling a repugnant odor? Most appropriate sentiments for such a disease component. There are other things that I have learned, things that have been imprinted more indelibly on my brain than these multi-syllable, diction improvers. Though I have mastered many mechanical skills such as giving shots, changing central line dressings, clearing blocked catheters, inserting feeding tubes, running different kinds of pumps, and even the dreaded drawing blood (I had to tell myself that if millions of IV drug users could find a vein even in their drug induced stupor, surely I in my right mind could locate a simple blue flexible tube under the skin.), these too are not the things that come upper most to my mind when considering this disease. The thing that amazes me the most is how much I have changed. Could the meek girl who quaked in the face of any disapproval from authority really be me? Could the person who would have tears flowing in the face of the most minor insult now be one who can return stare for stare and respond with, “Oh well, I guess everyone is entitled to his opinion.”? Am I still that person who always finagled some way to have my husband do any returns that had to be made and did not really like to attend any function without him? Maybe, because I still think that any confrontation or disagreement takes more out of me than it does the other person, but I am stronger, more determined, more self-assured. I hope that is good, because my husband also tells me that I am more cynical and skeptical and harsher and somehow I know that he does not particularly like it. Women should never go to war for it is impossible to watch people suffer and die at the hands of greedy power mongers and not change, not lose some of their softness, and still be able to fight. And why is it that I feel more vulnerable, more exposed, more tender than ever before? Is the other just the shell, the tough outside covering the scared me inside? Oh, yes I am scared. Only fools are not afraid in war. I have seen the destruction that this war has wrought for the battleground has been inside my child’s body. And I have watched a once vibrantly healthy, finely toned body shrivel to a painfully thin, exhausted, pain- ridden shell. And I have watched eyes that once shone with the zest of life dull to the faintest ember in the presence of the pain. The casualties in this war are not the scientists with the defeated paper, but the patients with the raging disease. And so I will learn the tongue twisters, and read the medical journals because God has placed me in this fight and these are my arsenal. And because He is just and good, I know that there is a purpose in this gruesome war and eventually Right will prevail. And in the words of one old soldier, “I have only just begun to fight.”

What A Doctor Should Be – ©Karen Angotti

// June 10th, 2010 // 1 Comment » // Family of Lyme, Guest Authors, LymeBites Blog, Lymenaide Awareness Campaign

(The following article is copyrighted and being used in it’s entirety with permission from the author). 

Helen Raser’s friend, Karen Angotti, is the mother of a beautiful young woman, Lisa Marie, who has been sick with lyme and co’s for about 20 years. Here is one of Karen’s many beautifully poignant pieces based on her long and difficult journey in the world of Lyme Disease. You may repost this article in its entirety only, please do not excerpt it, per Karen’s request.

WHAT A DOCTOR SHOULD BE
©Karen Angotti

A doctor should be a hero, a knight in shining armor, the sheriff in the white hat. A brave, courageous defender against wanton diseases and virulent pestilences that kill, maim, and destroy. He should be someone who doggedly pursues the enemy without a thought of retreat. Relentless and determined, he fights until the last breath is gasped and the last, faint heart beat is pumped through the struggling body of someone he may not even know. For this is his mission, to fight death and pain, to endeavor to soothe, heal, and relieve. It is a thankless task for death and suffering are as much a certainty as anything in this world. For as soon as one hideous disease demon is squashed with his seemingly pitiful weaponry, another more dreadful and fierce replaces it; and the battle begins anew.

A doctor should be someone who cares more for people than for money or prestige. A doctor who does not care is like an airborne blind pilot who cannot see the runway or read his instruments. All the knowledge in the world will not land that plane without the eyes to see. And likewise all the knowledge in the world will not cure a patient that a doctor blinded by indifference and apathy cannot see is truly ill. For a real doctor will listen to his patients with a heart of concern. He will listen to all his patients not just those who are comely of form, polished, refined, and educated. And adding that working knowledge of the patient to his book knowledge and experience, he will attempt to piece together a treatment that will work. No computer can compete with this ability. For though computers can spit out a diagnosis based on symptoms and then prescribe a standard treatment, no computer has a heart that can see and hear the patient with his own peculiarities and idiosyncracies like a real doctor can. Compassion is at the heart of that indefinable “art of medicine.” Without it, a doctor might as well be replaced by a timesaving, efficient state-of-the-art computer whose memory has less capacity for error than a frail, fallible human mind.

A doctor should be humble realizing that his craft is far from perfected. Medicine is a science that is constantly changing and growing; and the modern “discoveries” of today may soon become the obsolete “discarded failures” of tomorrow. Only a doctor who is humble enough to recognize the gaps in knowledge that exist can begin to have the kind of open mind that considers intriguing, new ideas and possibilities which may become the discoveries of tomorrow. For if one thinks he knows all there is to know, he no longer looks for answers and the three little words, “I don’t know” cannot pass through the sweilling lump of pride in his throat. Pride can construct an impassable roadblock on the path to the future.

A doctor should be someone who enters not a profession but a ministry–someone who is there to serve not to be served. People (even doctors) are not at their best when they are sick and scared. Who would not be irritated by listening to endless complaints all day long year after year? Only someone who realizes that the reason for choosing this calling was to alleviate as many of those complaints as possible. And given the impossibility of curing all of these ailments, the reward must not come totally from the lessening of complaints or the adulation of patients but from the knowledge of a service well rendered. The greatest satisfaction must come from knowing that you have done your best sometimes against seemingly impossible odds. Unraveling an intricate, diagnostic puzzle, using an innovative technique, or maybe simply holding someone’s hand and saying, “I am sorry.” These are the things that make being a doctor worthwhile. These are the intangible things that make the endless complaints, petty annoyances, and invasions of time bearable.

A doctor should be someone who is honest and trustworthy. Qualities that we often ascribe as more necessary for bankers and accountants. But which has more intrinsic value–mere money or an irreplaceable life? Trust is necessary between doctor and patient or a crucial element that may mean the difference between life and death is missing. If a doctor is saying one thing to a patient and writing another in the chart or gossiping about him with other doctors and nurses, then a sacred, unspoken trust has been broken; and the breach may impinge the entire relationship.

A doctor should be someone who is courageous and undaunted by the challenges which he most surely will face. There will always be some in every profession who are dishonest and even evil, those who will use their power for gain no matter how many or who it harms. “All it takes for evil to prevail is for good men to do nothing.” In medicine, perhaps more than any other field, it is imperative that the good men restrain the unsavory. For if they do not, who else will have the necessary knowledge or expertise to do so?

A doctor should be someone who is kind and discreet for ill-spoken words can scar
and maim as surely as a knife. And because these hidden scars are indetectable by any test or examination, they almost always cause a pemanent affliction–most notably a communication rift between doctor and patient that cannot be bridged.

A doctor should be someone who loves what he is doing so much that he would do it even if he were not paid or otherwise compensated. For in this ongoing battle between life and death, God’s most precious creation, Man, must inevitably confront his soul.

To my doctor, Edwin J. Masters, M.D., who showed me that a doctor could be what he should be.
Karen Angotti