“I went from the driver’s seat of my life to the trunk”

~ Carolyn Thomas

by Carolyn Thomas  ♥  @HeartSisters

On the day that her doctor confirmed her diagnosis of Multiple Sclerosis (MS), Jamia Crockett recalls feeling “very removed” from her patient experience. Her response, in fact, is one  that many patients living with any form of chronic, debilitating and progressive illness will find familiar – no matter what that ultimate diagnosis may be.

When the doctor told Jamia: “You’ve got MS”, she felt so removed that her first reaction to hearing these two letters was: “No, I don’t have an MS, I have an MHA!” (referring to her graduate degree in health administration). 

As she explained to the audience attending the 2013 Medicine X conference at Stanford University in September, her initial response on that day eight years ago was:

“I’m NOT a patient!

“In my life experience, being a ‘patient’ comes from a place of weakness, with vulnerabilty and no control.  And I’m a Type A personality in control of my surroundings, so when the diagnosis of MS was thrust upon me, I quickly rejected it and disconnected myself from the doctor.

“I went home and had a sandwich.”      

Jamia was told she had MS back in 2005, but, like all other patients hearing a devastating diagnosis, that period of her life remains seared in her memory:

“I moved from the driver’s seat of my life and slipped into the passenger’s seat. I relinquished my type-A personality. I was now this small little person inside of a huge life that was filled with something that I didn’t know how to fight.”

As the doctor continued to give me more clinical information, I moved again from the passenger seat of my life to the back seat of my life. MS was driving the car now, I was but a mere passenger on a journey to nowhere.

“I finally moved once again to another place in the car that was my life. I was now in the trunk. A small dark place. No way in . . . no way out . . . sad and tragic. MS was in total control and I was curled up deep inside myself with nowhere to go.

“I went from the driver’s seat of my life to the trunk!”

That sense of disconnect may well be a survival mechanism to help us digest catastrophic news.

As I wrote here previously, a temporary period of denial can even be helpful. Being in denial when facing a life-altering health diagnosis gives our minds the opportunity to unconsciously absorb shocking or distressing information at a pace that won’t send us into a psychological tailspin.

For example, here’s a health scare scenario from Mayo Clinic that may seem familiar:

“After a traumatic event has occurred, you might need several days or weeks to fully process what has happened and come to grips with the challenges ahead.

“This type of denial can be a helpful response to stressful information. You initially deny the distressing problem. As your mind absorbs it, however, you can come to approach it more rationally over time.”

Dr. Marc Katz, a heart surgeon at Bon Secours Heart & Vascular Institute in Virginia, was also a speaker at Medicine X. Here’s how he described what often happens when people discover that they are now heart patients:

“When people are given a serious cardiac diagnosis, many just shut down.

“They’re scared to death, whether they admit it or not. They’re afraid they might keel over with the next step, or that whatever horrendous procedure I’m going to recommend will disable them for the rest of their lives.

“I try to communicate ‘Yes, this is a bad thing and I’m sorry you’re in this circumstance, but there are things we can do to help you.'”

No matter what well-meaning reassurances physicians may offer, however, the reality for many people is that time may ultimately be the only remedy for finally pulling us out of the trunk and back into that driver’s seat.

And if you’re a doctor, remember that even though patients hearing a life-changing diagnosis will see your lips moving, and will hear sounds coming out of your mouth, many patients will simply be incapable of comprehending what you’re trying to tell them at first.

When I was lying on an E.R. gurney, hearing for the first time the cardiologist’s words “You have significant heart disease” essentially froze my ability to understand anything else he continued to say to me.

Recently, I was transported back to those surreal moments while watching the final five minutes of the Tom Hanks movie, Captain Phillips. It’s based on the harrowing real-life story of an American cargo ship hijacked by Somali pirates in 2009. In the film’s final scene, Captain Phillips is taken to the ship’s infirmary to get checked over. If you’ve already seen the movie, you know instantly what’s coming. He is so overwhelmed by what’s just happened to him that he can barely make out what the medic is saying (she’s played with exquisite calm by a real medic, 24-year old Hospital Corpsman 2nd Class Danielle Albert). Although essentially unhurt physically, he seems so disoriented that he cannot even comprehend or respond to the routine questions she’s asking him. Then it all suddenly hits him. Although Hanks as Captain Phillips has remained a paragon of composure throughout his terrifying ordeal, he now begins to cry. And he can’t stop crying.  And then I was crying right along with him, recalling my own inability to understand the E.R. staff who all seemed to be unintelligibly talking at me five years ago while I was in mid-heart attack.

Physicians and nurses need to pay close attention to this real-life emotional, mental and psychological trauma embodied in the whole person sitting or lying  across from them – trauma that can morph all communication into a muffled and incomprehensible nightmare.

Here’s what would have helped both me and Captain Phillips: when confronting a shocked and stunned patient in the throes of such nightmares, health care providers might do well to follow Dr. Katz’s lead and say something like:

“We know this is terribly overwhelming and frightening for you right now. But you are in good hands. We’re going to take good care of you. It feels horrible right now for you, but we’ll all do our best to help you as much as possible.”

Meanwhile, suggestions from Mayo Clinic for patients to help get us past this post-diagnosis shock and denial include:

  • Allow yourself to express your fears and emotions.
  • Journal about your experience in writing.
  • Open up to a trusted friend or loved one.
  • Participate in a support group with other patients.
  • Try to identify irrational beliefs about your situation.
  • Learn as much as you can about your new diagnosis.

Jamia Crockett is like most patients who find out that eventually climbing back into life’s driver seat is indeed possible, no matter how bleak things may have looked back at the beginning:

“As a patient, I’ve learned that I do have a voice, that I can use it, and that there’s even power in being a patient. I’ve evolved from being a passive patient to a much louder, more engaged patient.

“Before this, I didn’t see the strength in how I could grow from this experience, but since my diagnosis eight years ago, I was able to get married, have two beautiful kids, finish my degree.  If I’d thought ‘Oh my life is over’,  I’d never have done all that.

“And I’m a pro-active patient now.”

.See also:

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Q: Can you relate to that sense of moving to the trunk from the driver’s seat of your life?

 

Published by Carolyn Thomas

25 thoughts on ““I went from the driver’s seat of my life to the trunk””

  1. I love the trunk analogy–so true! I also was so very moved by the infirmary scene in Captain Phillips and kept wondering why the medics didn’t offer Phillips any comfort in a time of such extreme distress. While they have a job to do, a few consoling words or a gentle pat on the arm could possibly go a long way toward alleviating the distress. Great post!

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    1. Thank you, Nancy! That infirmary scene in the film was “strictly business”, wasn’t it? Checking methodically for physical injuries, taking vital signs, etc. That’s why it hit me so hard, I think, as she continued to ask Hanks questions that by then he quite clearly seemed incapable of even understanding. I later read an interview about the medic who essentially played herself in the movie, in which the incident was described as “performing an examination so realistically, it feels like you’re watching a documentary”. His raw emotions seemed so familiar to me – that sense of somehow holding it all together during the actual crisis, but when it’s all over, you can fall apart because you’re in safe hands.

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  2. The car is a great analogy, and extremely realistic. Many of us were told after our heart issues that we couldn’t drive. That loss of independence was huge for me, as I wanted to get back into the driver’s seat; literally and figuratively. Being held back and relegated to being dependent on others was torturous.

    Once I was given “my freedom” once again, I didn’t take it lightly but appreciated it as a ticket to take care of my self and my wellness; emotionally and physically.

    No back seat or trunk for me! I guess, I’m just too damn stubborn, but it’s that stubbornness that helped me survive the severe heart attack I survived.

    As for doctors and well meaning friends and family, there is a huge difference between offering optimism vs hope. Don’t tell us that everything will be ok, give us the opportunity to be an active participant in our wellness, and show us models for survival. That’s hope and we all could use more of that.

    Thanks again Carolyn for a wonderful article. I will use this subject for my next WomenHeart meeting.

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    1. Hello Eve – such a good point about “optimism vs hope”. That’s why I appreciated Dr. Katz’ approach of offering helpful support without resorting to the glib ‘everything will be just fine!’ response. As we know, sometimes things do NOT turn out “just fine” for all patients, or sometimes there will be many distressing setbacks on the way to feeling fine – no matter how determined or positive we may try to be. And that’s why I believe the ‘one day at a time’ mantra is still so important.

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  4. Thanks for sharing this great analogy. I can relate totally even to spending time in the trunk, but hopefully I am back in the drivers seat most of the time now …

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  7. Wow…. I never knew that my trunk analogy would resonate with so many patients… but what that tells me is that we are all in this patient journey together….

    Keep driving friends! Cheers to staying out of the trunk!

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    1. Thanks for that inspired and inspiring analogy, Jamia! Your words do indeed resonate with those of us – no matter what our diagnosis – who feel blindsided by a shocking diagnosis. Good luck to you, and keep up the good work…

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  8. Time may not heal all wounds, but it does help put things in perspective. The car analogy is great. I didn’t like it in the trunk – hope I don’t have to enter that dark place again!

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  9. I can affirm that it is, indeed, a process. Over the span of several years, I have crawled back, first to the back seat, then to passenger side and now, figuratively and literally, into the driver’s seat.

    I was fortunate enough to be accepted into an NIH study, and have just returned from Bethesda.

    Though I had a few rough spots on the trip where I could go no further and could only sit for an hour or two, this trip by myself, with luggage and a rental car, and sadly, too many hotel changes, gave me a few triumphant moments. I was driving my rental car at night in a place I’ve never been to (with GPS, marveling how I used to do it without GPS!), remembering what it was like when I was in national level sales, traveling for business. I felt again that I was “kicking some butt”, but soon dropped down when I realized my 12 hour nitro had worn off and I felt very funky. Nonetheless, I traveled without my husband, my roadie, with my CPAP, and dealt with it along the way. I found food to stay on my protocol (Whole Foods) and even did sightseeing (aka, got lost!). If I seem overly pleased with myself, please forgive me. I had a rough decade prior to this.

    The key point I’d like any doctors to understand, is that it’s important that they truly witness and are WITH that patient – exactly where they are. When you quickly and cheerily tell them, “You’ll be back to normal, yada yada”, you are denying them the reality and truth of what they are experiencing. The patient’s life reality is discounted and minimized. I am sure that part of that response is the “wanting to assuage” that person’s distress. Understandable, but as many people know, to witness is a powerful human response.

    Like an overboard person in the ocean, we need that rescuer to emotionally get INTO the freezing water WITH us, put that life preserver around us, and swim WITH us till we are helicoptered out.

    That validation makes all the difference in the world.

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    1. Congratulations on your Big Adventure, Mary. I am proud of you! I bet that many times during the past decade when things were far more bleak you may have had a hard time even imagining one day doing things like flying to Bethesda and managing hotels, car rental, food-shopping, luggage and sightseeing on your own – and you’ve now done it! I’m so glad that you were part of the NIH study, and look forward to hearing more about it. Your advice to doctors (and ALL health care professionals) who think they’re helping by trying to breazily brush off their patients’ experience with “You’ll be fine!” is 100% right on the money. Thanks for that.

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  10. There may be good news on the horizon for MS patients. We have a local man who had it pretty bad and they tried him on an experimental drug – he claims with the drug he is almost cured – or the next best thing – the symptoms and lesions on his brain are completely gone. Check out Appleton Post Crescent from Nov 12 or 13. It was a front page article. I pray for those who suffer from MS as my mom died from complications of this terrible disease.

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  11. I’m no longer in the trunk; I am outside the car, clinging desperately to the top of the trunk, hanging on for dear life as I frantically look for answers to a diagnosis the doctors don’t seem to know how to help with.

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    2. I honestly feel as though I have moved from the full responsibility of the driver’s seat to the relinquished control of the front passenger’s seat. Since I have the same or similar view over the dashboard, I “feel” as though I am still in control of my life; yet, it is glaringly obvious I am no longer the fearless, carefree, energizer bunny I was up until my 36 years of “normal” life.

      Even waking up after 3 days in a coma and being told that I was not expected to wake up on my own, I still had the same view, the same sight, the same car! There were no dings or visible signs of any accident occurring! However, they’ve come over time (the headaches, the weight gain, the fatigue, the hair loss…) and even my body reacts to stressors differently now (similar to PTSD).

      It is literally like being excited for a road trip, but your parent continuously pulls over to each freaking rest stop on the stretch… making your trip, and with it your excitement, drag along….

      It’s been a little over 2 years now and my hair has not grown back, the headaches come and go, I get completely exhausted and have to lie down at certain odd times, BUT I am grateful that I did indeed wake up on my own and I am happy to still have a car to even be in.

      Maybe when I am much older, I will relent, move to the back seat, and allow myself to have a personal chauffeur….but not now…. now is not the time. I still have a lot of life to live, just maybe at a slightly slower pace.

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        1. Oh, thank you! I enjoy your blog tremendously. I realize I was quite vague regarding my circumstances, but I went into into cardiac arrest at home and woke up 3 days later wondering “What the hell happened and where are my children?”. Roughly 3 weeks later, I was discharged from the hospital to return to life “as normal”. The past 2 years have definitely been a journey and patients definitely have to advocate for their own care…(be in charge of your own health!)

          I am so glad you are out there spreading the word.

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          1. Cardiac arrest! No wonder you have described your journey as feeling like you’re riding in the passenger seat these days. You also brought up such a good point about having an invisible health concern that may look “normal” to outsiders. Did you participate in Invisible Illness Week this year? You might find it therapeutic (as I did!) to complete the 30 Things meme yourself as a journal exercise. Good luck to you…

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            1. A musical Doc has just given my wife (bypassx3 just 3 weeks ago) words for the Stones “I can’t get no satisfaction”:
              “I ain’t no, Cardiac Cripple”
              She sings it …sometimes.
              But what’s with this fluid on/in the lungs ? She has had it drained twice in 3 weeks????

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