A Cold Shower

Shower

Before I get started, A BIG THANK YOU to Tom, of Tom Being Tom fame, for being a guest author last week. Your contributions were well received and much appreciated Tom. A handful of other bloggers, and some published authors, whose writing I enjoy and admire have also graciously agreed to contribute to this blog when the mood strikes them. I’m looking forward to reading what they have to say with great anticipation.

We now return you to the regularly scheduled program………….

When I was first diagnosed, I received a lot of advice from various outlets, the primary one being that I should seek the help of an “expert” in the MS field. I wasn’t keen on that idea at first, but eventually warmed up to it. After all, there is nothing wrong with a second opinion, and I became increasingly curious about what they might have to say or recommend.

Johns-Hopkins emerged as the preeminent facility closest to home. Making an appointment was easy, and I wasn’t choosy about who I saw because I assumed they were all good.  Once the date and time was set, I signed the necessary releases so they could obtain my MRI results and medical records, then booked a round-trip flight to Baltimore and a room at the Inner Harbor Marriot. When I subsequently mentioned the trip to a good friend, he decided to drive from his home in Pennsylvania and hang out with me for the weekend. This made the upcoming journey seem like a fun thing to look forward to, rather than a solitary business venture.

We met in the hotel lobby shortly before noon that Friday morning, discussed our plans for the weekend, and he asked if I wanted him to join me for my 1:15 pm appointment. I had never considered it, but thought it might be a good idea. Having another set of eyes and ears would help insure I didn’t miss anything the doctor had to say. This turned out to be a wise decision, but for different reasons.

Both of us had worked in the healthcare arena our entire careers and were not intimidated or awed by hospitals or clinicians. Nonetheless, I was apprehensive about the appointment and what I might learn, good or bad, from it. After all, this was Johns-Hopkins, and they knew their shit. It felt like I was going to court to be sentenced by the judge.

Once we arrived, the registration process didn’t take long and we were ushered to the clinic, then escorted to a treatment room. A few minutes later the physician arrived, and introductions were made.

I started rattling off things about myself, my clinical history, and why I chose to come to Hopkins. Then I started asking a bunch of questions about treatment, prognosis, and things of that nature. Looking back on it, I’m sure it was obvious that I had made a pilgrimage to what I thought was the MS mecca of the eastern seaboard.

It turned out to be more like Dorthy meeting the Wizard of Oz, because when I had finished talking, he gazed at me with a look that was a combination of indifference and boredom. The first words he said were:

“When has medicine cured anything?”

Talk about a buzzkill.

At first I wasn’t sure I heard him correctly, then scrambled to try to hide what I’m sure was the crestfallen look on my face. For the next fifteen minutes, he asked a few questions and provided information regarding what I might consider doing in terms of treatment, diet, and things of that nature, but that is all a blur to me now. I had tuned him out, and picked up the pieces of what I didn’t hear from my friend later on.

I was dumbfounded. After all, what this guy just said, or so I thought, was “why did you come all the way down here, you idiot. You’re fucked, don’t you know that?  If you’re looking for encouragement you came to the wrong place.” Whether that was fair or not, I could not believe I came all the way from Connecticut to what I presumed was one of the premier MS institutions in the country to be treated like this. I wasn’t looking for a cure because I knew none existed. What I was looking for was information, validation, encouragement and, most importantly, a reason for hope. Instead, I received an ice cold shower.

My friend and I left the treatment room in silence, headed to the main hospital lobby, and sat in one of the sofas. I turned to him and asked “did that really happen?” He smirked and replied, “I was about to ask you the same thing. I can’t believe he actually said that.”

The remainder of the weekend was spent exploring the Inner Harbor, taking in an Orioles game at Camden Yards, and enjoying the fine cuisine the city had to offer. We cracked jokes over dinner and drinks about the healthcare business in general and that physician in particular, so the trip was not an entire waste.

I’m not sharing this story to declare this physician did me a favor, and how grateful I am for it. At the time I was incredulous, confused, and rip-snorting pissed. His general demeanor and attitude irritated me the most. Besides, I didn’t totally agree with what he said, but didn’t want to debate the point. I may be splitting hairs here, but didn’t medicine solve polio and several other scourges?

The reason for sharing this story is to tell you about the two invaluable lessons I learned from this experience which have guided me throughout my MS journey, and apply to anyone suffering from a chronic condition.

Lesson one is to be your advocate and decision maker regarding your health and treatment. Don’t search for the Holy Grail because it does not exist. Finding a  knowledgeable clinician you connect with is paramount, and you can find one nearby if you look hard enough.

Lesson two is to learn as much as you can about what is ailing you, and don’t automatically defer to your clinician just because of who they are. Ask a ton of questions, don’t worry about whether they may be “stupid”, and if something doesn’t feel right, don’t do it.

I didn’t practice either of these until after the Hopkins experience. Otherwise I never would have agreed to self-inject with both Betaseron, and then Copaxone. I had primary-progressive MS, and knew these drugs were not clinically effective for it, yet I agreed to take them because that was what my neurologist suggested. Needless to say, they didn’t do a thing for me other than cause occasional pain from the injection, bruising and welts.

I also would not have agreed to having a spinal tap in the neurologist’s office. I knew they were generally performed at a hospital, and thought I might be more comfortable and relaxed in that setting, yet agreed to the office because that’s what he wanted and I trusted him. It turned out to be a bad idea, and I wound up going to the hospital anyway after four unsuccessful attempts at drawing fluid. I changed neurologists shortly thereafter.

The Hopkins gambit opened my eyes to what I was doing wrong and helped transform me from being a docile mouse who agreed to anything my doctor said, to someone who took ownership of an uncertain future.  I found a new neurologist, and have been with him for the last eight years. He is on top of all the research, and has a wealth of information concerning what has and hasn’t worked for the thousands of patients he has treated over the years. He shares the pros and cons of any recommendation he might suggest based on this knowledge provided I ask the questions, which allows me to chart my own course.

To this day I don’t understand why that doctor at Johns-Hopkins said what he said or acted the way he did, and often wondered if he treated all first-time patients the same way. Out of curiosity, I checked to see if he still worked there before I started writing this entry, and wasn’t surprised to learn that he did not. He’s on the faculty at the National Institute of Neurological Disorders and Stroke in Bethesda, MD.

A research and academic environment like the NINDS sounds like a perfect place for this guy. After all, his bedside manner left a lot to be desired.

 

 

 

 

Author: Steve Markesich

I am loving husband, a doting father, a Red Sox fanatic, an aspiring novelist and MS advocate. Feel free to check out my stevemarkesich.com web site.

42 thoughts on “A Cold Shower”

  1. That’s why I hate going to speialists. I have had over 15 surgeries, inpatient and outpatient, including an “exploratory” surgery In 1956 after a week in the hospital at age 12 which determined I had a ruptured appendix, back surgery for a herniated disc, 3 knee surgeries including one total knee replacement and open heart surgery to repair both an ascending aortic aneurysm and a leaky aortic valve. I still have chronic back and knee pain. I will not have any further surgeries. I will keep you in my prayers Steve.

    Liked by 2 people

  2. I’ve been concerned about my neurologist for a few months now I know he must see a lot of other people but I don’t feel like he would even recognise me if I walked past him on the street. I like somebody who has so much control over my medication and my body I guess to know ME but I thought maybe I’m just being silly?

    Liked by 2 people

    1. sometimes it’s hard for me to wrap my head around the fact that when we “get sick” we sometimes have to fight harder than we have ever had to fight…hardly seems fair does it? Make sure YOU are comfortable with your choices Kim…it never hurts to proactively meet other ms doctors, maybe you will find one that would recognize you on the street…ftr I think that’s very important

      Liked by 2 people

        1. lol experienced for sure, but I am still learning everyday. Sometimes having MS makes you feel so alone, and it’s easy to get caught up with the negative nellies when you aren’t feeling well. You’ve found a good group kim, now you just have to find what works for you hun 🙂

          Liked by 2 people

  3. First of all, you are quite welcome, my friend, and thank you for the opportunity! It was fun, and hope to do it again some time soon.

    Secondly, those are powerful lessons, for anyone. Learn as much as you can and be your own advocate. I could carry those words as the screensaver on my phone, to remind me always.

    A warm shower is always more comfortable. But sometimes we need a cold shower to wake us up, eh? 😉

    Liked by 3 people

    1. It certainly woke me up, and that turned out to be a good thing, but I often wondered how pleased the hospital would have been had they known on of their clinicians was tell a patient medicine is a waste of time because it doesn’t solve anything. Not very, I am sure.

      This post almost became a debate about healthcare in general but I thought I would save that one for your blog

      Liked by 3 people

      1. I’d be interested to read a good “healthcare debate” post 😉
        Sounds to me like your experience was two-fold: lessons learned and what sounds like a really nice time with a loyal, compassionate friend 💕

        Liked by 1 person

  4. I can totally relate to this Steve. The doctor who diagnosed my RP is apparently world renowned; one of the techs, on the day of my diagnosis, claimed that patients came all the way from Egypt to see the man. I thought I was in the right place, in the right hands. Not so much. The story of that day is for another time, but thankfully he left Jules Stein and his patient load was split between two other retinal specialists. I love the doctor I have now and have been with him for 15 years. World renowned doesn’t mean good doctor. Loved this post! So glad you found a doctor you like!

    Liked by 1 person

          1. I hadn’t thought about it, but that’s a great idea. If you don’t see it tomorrow it’s because the meds I got yesterday have me down for the count. That usually happens on day 2. If that is the case I will post it Monday.

            Thanks Billy and enjoy the rest of your weekend

            Like

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