I was raised at a time when people looked up to physicians.  We trusted them.  In my experience, that trust has been well-deserved except in a few remote (but important) cases.

Doctor Karl Markin, of Williamstown, MA, was my obstetrician when I was to deliver my son, Shaun.  It was 1966 and husbands were not allowed to be with their wives as they experienced labor or delivery.  Those were the rules, and we did not question them.  It was just the way it was.

When I reached the delivery room, I told Dr. Markin, if the baby is a boy, please do not tell my husband.  He’ll know anyway, but I want to be the one to tell him he has a son.

Five minutes after Shaun was born, he was placed on a cold chrome table next to my bed, still in the delivery room, and Dr. Markin circumcised him.  It all happened so fast!  I was in shock and as I watched this tiny baby scream in pain, turning blue and writhing around on that cold table I couldn’t believe my eyes.  This was barbaric!  All so that he could tell a joke!  He walked into the waiting area and said to Shaun’s dad,  “Well, she won’t let me tell you what it is, but I just circumcised it.”

Shaun is forty-five years old now and I am still filled with fury as I sit here typing these words.  The picture of my innocent baby, minutes from the warmth and comfort of my womb, in such distress and I was unable to protect him.  This memory just kills me.  It hurts my heart still, and I know it always will.

In the ensuing years, I have had incredibly competent doctors and dentists.  I stayed with each for many years and I knew they cared about me and my family.  I was truly blessed.

When Chris had his open heart surgeries, I was there every step of the way.  I was his advocate and I watched everything and everyone.  By the time he had his second surgery, I knew how he would respond in the recovery room, and in those precarious minutes between a breathing machine and breathing on his own, I was able to be his voice.  The nurses listened to me and paid attention when I told them that he couldn’t take certain meds that should have been in his chart, but they weren’t.  His care was excellent.  There was a mutual respect and warmth between his surgeon, cardiac care staff, and Chris and me.

And now, I am the one needing medical care.  A local neurologist sent me to University Hospital and one of the top two neurologists in Denver, specializing in ALS.  In July, on a routine visit, my doctor informed me that he wanted to install a feeding tube.  Granted, I had lost over twenty pounds in less than six months, and found my self obsessed with getting adequate calories, but I never could have imagined a feeding tube.

The problem is that I have the bulbar type of ALS.  That type affects your speech, swallowing, muscles in your neck and throat before it moves to arms and legs.  My tongue hardly moves anymore, which is why the speech is effected and eating becomes very difficult.  I had never thought of what an integral part my tongue played in my ability to socialize and nourish myself.  I took it for granted, assuming it would always work the way I expected it to.

So, on that July visit to my neurologist, I felt as if he had slapped me, really hard, in the face.  He said, “Well, you won’t be able to eat or drink at all eventually.”  While I probably should have known that, in that particular moment, I was stunned.  He told me I would be relieved to have a feeding tube because it would be so much easier.  He explained that they prefer to do it when breathing is not an issue.  Performing an endoscopic procedure can be dangerous on a person who has breathing difficulties, so he urged me to agree to it as soon as possible.  I knew that I hadn’t been having much fun trying to eat, and often experienced choking spasms.  In fact, I dreaded each time I knew I would have to eat again.  I wasn’t hungry.  It was painful, but a feeding tube?  I was sad, scared and felt trapped.

It was his demeanor that has stuck with me.  So matter of fact.  This is the way it is.  No obvious concern for how I might FEEL about it.  No feeling whatsoever.  It is what it is.

So,  desperate to stop the weight loss, I agreed to what everyone called “a simple procedure.”  Dear readers, if you’ve been following all of my posts, you know that this was anything but simple for me.  It was a debacle, including incompetency by the GI team that placed the tube, to a lack of caring about my suffering, even when it was reported to them.  The head doc was unable to answer two of my questions the day after the procedure:  When can I shower, and will I ever be able to go in our hot tub again?

This week, I was referred to a pulmonologist.  A different hospital, and very organized, with kind staff doing all the steps to get me into the room with the doctor.  He entered the room, with a serious look on his face, no warmth at all.  He was polite, period.  He looked at the paper work, and began to grill me, “What do you know about ALS?  What have you read and researched?”  I was overwhelmed by these huge questions!  I’ve just met him!  I had expected him to give me some answers.

We have done so much research in the past two years from reputable sites on the internet.  We have used the Rocky Mountain Chapter of ALS, talked to people who have the disease as well as social workers and a therapist.  How could I organize all of this information in a few succinct sentences?  I finally told him in the simplest way possible about the weakening of muscles, which, in my case, started with my tongue, then throat and now my lungs.  He asked if I have a living will.  I told him that I do, and he demanded all the details.  By this time, I was feeling so confused and overwhelmed, I just said that I have decided not to ever go on a respirator, and that really got him started!  He went into this diatribe about how  we must have DO NOT RESUSITATE clearly on our refrigerator, in case the ambulance has to come.  He said how we may think we have everything clarified, but we probably do not.  On and on, for what was probably about five minutes, but it felt like forever.  When I started to cry, he let up.

As it turned out, the device I had hoped to get that day is not available at this point, because my lung capacity isn’t low enough yet.  I went through all the motions of his examination, and he finally left us with a handshake and still, no smile.  The damage was done.  I was bereft and didn’t really understand what had just happened to me.  I felt lost.

My husband’s niece sent me a new book.  It arrived the day after this miserable appointment.  It is called The Inner Pulse, by Marc Siegel, M.D.  In this book, Dr. Siegel tells of the connection between the body, mind and soul in the healing process.  He talks about the patient’s will to survive as being key.  I began to inhale the words of this book!  A “just in time” work of wisdom!  It has helped me come to grips with how my attitude about my life has been effected by my horrific experience in the hospital, the amount of pain I endured, and the doctors’ attitudes toward me.

I don’t feel that they see me as a viable human being.  I’m another statistic who has ALS.  Of course, everyone knows that anyone who has this diagnosis is hopeless.  There is no cure, so don’t get close.  Deal with the facts.  Prepare for the inevitable worst.  Be a good girl and do what your doctor says because he’s the expert.

I’m not going to play this game their way.  I am not just a number, a statistic.  I have hope.  I am realistic, as well, and I know what will probably come in time.  But I do not know how quickly.  I do not know what level of quality my life will have and for how long.  I do know this.  I cannot have doctors that have just written me off.  I am exceptional.  We ALL are exceptional.  If snowflakes are unique, can’t we be, too?

Because this book has helped me organize my thoughts, I have an appointment with another neurologist.  He’s the one that gave me my second opinion.  He is kind and he makes eye contact when he speaks and listens.  Yes, he listens.  I will go in with questions.  I will tell him that I want a partner in this process.  I want a knowledgeable physician who is willing to be part of our team.  I want him to know about the experimental procedures going on and if there is anything that he feels may be good for me, I want him to care enough to tell me about it.

I will not be a number.  I am not going to do this just like everyone else.  I am going to be a vital part of my own life.  I am going to be my husband’s wife, my children’s mother, my grandchildren’s grandmother, and a friend to my friends as I have always been.  I am not going to roll over and play dead, follow all the rules and accept less than ideal treatment.  I’m in the fight of my life and I’m comin’ out swingin’!