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This news is both moving and a profound reason for hope! When I was diagnosed three years ago, voice banking would have taken eight hours, and I simply didn’t have the strength – or money – for such an endeavor. As you will see in the video,141136 this company was able to recreate this man’s voice with only three hours of recording. Maybe one day, my half hour of recording will be enough to get my voice back!
“I’m shouting hard… This is the start!”
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If you are anything like me, you do a little research before choosing a doctor. Patients can easily learn about the traditional aspects of their doctor’s qualifications, such as the college they attended, years practicing, and awards earned, with a simple Internet search. However, it’s quite a bit harder to get a feel for a doctor’s emotional intelligence. Emotional intelligence is the ability to think and gather information about emotions, and then to use that information to achieve goals. Goals may include managing one’s own or others’ emotions, like staying calm, cheering someone up, or deciding how to share important news.
Whether or not your doctor practices emotional intelligence will make an enormous impact on the quality of your care and mental health. At best, a doctor lacking emotional intelligence can make you feel unheard, unimportant, or confused. At worst, you may end up feeling completely devalued or even traumatized.
Let’s travel back in time one week. Zoom in on me lying on the table in the OR. Right away, things started going wrong. I stayed on the table for a half hour while nurses darted around me like frightened birds, trying to find out where the surgeon was through every phone and pager in the room. One nurse even ran out into the hall to ask random people the question on everyone’s lips: “Where is Jeff?” I knew the instant he finally arrived because he owned that room. Even though my face was covered, I could feel him walk towards me, the nurses falling silent as he passed. He never paused his diatribe about paperwork and how he refuses to do another page today. He didn’t even stop when he put his hands on me. I remember thinking, he should see my face, speak my name, explain the procedure to me, anything to indicate that he knew he was touching a sentient, feeling being. That’s what an emotionally intelligent doctor would do. When he touched me, I felt like a piece of meat.
Next, the team couldn’t sedate me because of my low blood pressure. I was paralyzed when I heard this. That’s right, heard as in, overheard. No one said, “Your blood pressure is pretty low. Has this ever happened before?” No one said, “If we do this procedure right now, you won’t be able to have a sedative. How do you feel about proceeding?” Taking care of a patient means approaching him or her with empathy. A cornerstone of emotional intelligence, empathy consists of admitting ignorance about a person’s inner life and taking steps to remedy that ignorance by asking questions and imagining a different perspective. However, Dr. Jeff was too busy ranting about his least favorite nurses and why they should get fired to address me, much less ask for my opinion.
The team gave me Lidocaine, which didn’t cut it – pun intended. Apparently, Dr. Jeff remembered he was operating on a person because he finally spoke to me: “You are going to feel just a little pressure here.” I braced myself. Then, a fire alarm went off in my brain, screeching, “Sharp! Sharp! Sharp!” as red strobe lights blinded me. I cried out when I felt the blade going in and out of my skin.
“You are going to feel pressure, there’s nothing wrong with that,” Dr. Jeff patronized. Did he forget I was not sedated?
The next thing I heard was, “Wow, she is bleeding all over the place.” This is not what you want to hear immediately after someone slices your jugular. It seems that one of my medications contains an anticoagulant. At that point, an emotionally intelligent doctor would have addressed me to manage my emotional experience of the surgery and reassure me. You probably know Dr. Jeff well enough by now to realize that this didn’t happen. In fact, after he closed the artery, he joked, “Now don’t go repeating anything you heard in here.” Naturally, I interpreted this comment to mean, “Hey, Right Shoulder and Side Neck, thanks for being such a good sport. Feel free to publish this experience as a non-example in your article on emotional intelligence in ALS News Today.” So here we are.
Apparently, a lot went right with the surgery. The results were exactly as hoped for. Still, imagine my surprise when I returned to my room to find my mother and husband smiling. They squeezed my hand, kissed my forehead, and told me how brave I was. “The surgeon stopped by and said that the procedure was a success!” my mom said.
It was then that I started to cry. The experience of being helpless to pain and violence dragged me back eleven years to the night I was nearly murdered. My PTSD symptoms flared to life; anxiety and depression crept in, first through nightmares, then into my waking life. I kept thinking about how different my mental state would be if Jeff had just spoken to me. I remembered how my would-be killer barely spoke to me, either. Why would he? I was meat to him, too.
How does the term “medical success” not take patient experience into account? Answer: when the success is being described by a doctor who shows zero emotional intelligence. No one deserves this treatment, especially not those made vulnerable by disease. Emotional intelligence in doctors is an absolute must, just as vital as the medical degree that allows them the privilege of being in the room with you.
Lucky for me, the doctor I see most frequently, a neurologist named Dr. Goslin, is an expert at practicing emotional intelligence. From the moment I stepped into her office, I felt like I was the most important person in the world to her. She wanted to know all about me, way beyond my ALS story. In fact, she knows as much about me as some of my friends do. The day I met her, all she wanted to do was listen. Then, she asked me about my emotional state and medical goals. I told her I felt positive, ready to fight, and I wanted to survive this terminal, currently uncured disease.
Her response? “I think that’s a great goal, and with the way research is going we definitely have reason to hope.” I knew what I had said would be laughable to many people, but she managed to respect my feelings without making me promises she couldn’t deliver. That conversation set the tone for every future interaction we had. We follow a treatment plan that focuses on the goal of survival by staying ahead of the disease and minimizing its strain on my body while I wait for the cure. Dr. Goslin used emotional intelligence to learn about me and achieve her goal of designing a treatment plan for me, not just my disease. Now every time I see her, I feel empowered. She is an important part of keeping my mind healthy.
When I decided to write about how the emotional intelligence of doctors can affect a patient’s mental health, I asked Dr. Goslin if I could interview her. She agreed with enthusiasm.
At the beginning of the interview, she said, “I think that emotional intelligence as you have defined it is one of the most important aspects of being a good clinician. Acknowledgement of the importance of emotions is part of treating the whole person and not just the disease. [However], my medical training did not address this aspect of care at all. There wasn’t any acknowledgement of the importance of emotions (of the patient or of the self) in caring for patients.”
Well, that explains Dr. Jeff, but what about Dr. Goslin? Where did she learn about emotional intelligence and how to practice it?
“I have attended various educational meetings regarding awareness of this topic, particularly based on mindfulness, meditation, and being in the moment. It is definitely something that I cultivate,” Dr. Goslin said.
She went on to explain, “A lot of emotional intelligence comes from experience and a willingness to be open to emotions, both mine and others. When emotions arise that would typically be unpleasant or uncomfortable I tend to allow them to flow over me, and I sit with them, without actually judging them as negative. I then use awareness of the emotions to help determine what the patient finds most important to have addressed and how best to do this.”
Being a doctor who practices emotional intelligence sounds difficult, even draining, but Dr. Goslin can’t imagine treating her patients without interacting with their emotions. “I believe that patients’ emotional response to disease and to their care factors heavily into how effectively they can be treated. Fear and anger are two common emotions that occur in the setting of illness and that can impede medical treatment. Often when a doctor can recognize and address these emotions, road blocks to treatment can be removed.”
“How does practicing emotional intelligence affect you on a personal level? Is it challenging?” I asked.
“I think that emotional intelligence sometimes allows me to have a closer relationship with patients, which can make my sorrow for the patients more extreme. It is also important but sometimes difficult to recognize my own emotions and not let them interfere with patient care. For example, before going into a room to give a patient a diagnosis of ALS, I might be feeling fear and anxiety about how the patient will accept the diagnosis and how well I will be able to respond to the intensity of emotions that are likely. I have to control these emotions so that the patient can be the appropriate center of focus.”
When I asked her what emotional intelligence brings to the table when dealing with a terminal disease like ALS, she answered with the optimism that is perhaps her defining characteristic: “While ALS is terminal, it is not without treatment and hope. I think that use of emotional intelligence results in a closer patient doctor relationship and builds a level of trust and openness. I hope that the positive emotions that I bring to treating diseases (even terminal ones), increases the likelihood that patients will also have positive emotions.”
So, how can you find the emotionally intelligent doctor you need and deserve to keep your mind mighty? Dr. Goslin, of course, has the answer. “In some ways, I think the web based assessments of doctors can reflect their emotional intelligence because I believe that patients have greater satisfaction when treated by a doctor with emotional intelligence. Of course these assessments can be also be done by patients who are unhappy with a doctor for unrelated reasons, like the doctor wouldn’t prescribe narcotics.”
Keeping that caveat in mind, I recommend using the following free sites for finding reviews: healthgrades, RateMDs, Yelp, and Zocdoc. Once you have a list of a few you like, you can call each doctor’s office or sometimes even email the doctor directly to ask if he or she follows what I call “The Goslin Equation:” mindfulness + meditation.
Need help planning what to say during your phone call or in your email? Check out this script:
“I am interested in working with a doctor who practices emotional intelligence. How is emotional intelligence part of the way you treat patients? Can you tell me if you have had any mindfulness or meditation training?”
Now go get the fantastic care you deserve!
Abridged version originally published by ALS News Today on October 2, 2017
Ever since Donald Trump won the election, I am a stranger in a strange land. For our next leader, my country chose a man who personifies rape culture. My PTSD from when I was sexually assaulted is already severe because of him. Listening to him for the next four years and knowing he has power over me will make it worse. Plus, Trump wants to slash the health care legislation that allows me to receive wonderful treatment. Without my current insurance, my medical expenses are $200,000 per year. Things could get really bad. My sister has already offered to sell a kidney and her eggs if I lose my coverage.
I hang onto my sanity by writing through the madness. I now have the privilege of writing regularly for The Huffington Post and am currently composing an essay on Portland’s post-election protests and riots. Working on this piece has been an emotional process. It forces me to sort through my heartbreak. It challenges me to experience the election and protests in a way that aligns with one of my core values: choose hope over fear.
Fear’s long, dark fingers are already trailing down my back, though. They tug at me persistently. Giving in would be so easy, it would almost be a relief. But then I think back to that stream, the one that carries my emotions like leaves. There are many leaves in the stream. I picked up fear, but I can put it back in the water and watch it drift away. Maybe this is how I’ll choose hope: by opening my fists and letting everything else go.
Sitting in my dark apartment, I watched the clock eagerly, biting my lip as I waited for 9:30. Because of my feeding and medication schedule, I rarely go out at night, but I was about to make an exception. Three more ticks from my kitchen clock, and I put my wheelchair on high speed, zooming down to the corner cafe to meet my friend Natalie.
“You’re here,” she stated as I approached. We both know me actually showing up when I promise is a rare occurrence. Natalie doesn’t hold it against me, though. No matter how often I cancel plans or forget to text back, Natalie remains unruffled, and I don’t even think it’s because I have ALS. I get the feeling she is just so complete that I don’t have the power to ruin anything. I’m not sure, though. I have never had a friendship quite like ours before.
We looked up at the sky, and my heart dropped to see a full blanket of lavender clouds. “Not a single star?” I asked.
That night, my city was attempting to bring attention to light pollution by encouraging citizens to use minimum lighting. The goal was to get us out into the streets looking up at the stars and marveling over what we are missing. My neighbors and I followed the rules. Even the cafe closed early, the only light inside the soft blue glow of the beverage cooler. Still, the stars remained hidden.
“Apparently, it takes months for the rays we send into the atmosphere to dissipate,” Natalie shrugged. She settled onto the top chair on the stack of outdoor cafe seating.
Another great thing about Natalie is that she handles disappointment with utter calm, whether she accepts it and lets it go or speaks up to rectify the situation. There was no one to complain to tonight, though. This show had no director to adjust the scene. However, good company can salvage even the darkest day or, in this case, the brightest night.
I settled into my wheelchair, reclining so my feet wouldn’t swell. I imagined that if I had my old strength, I would hop up to sit on the low cement wall of a nearby planter and swing my legs.
After a moment of quiet, she said, “I might move. I hope not, though. I like knowing you’re around.”
Although Natalie and I have only met in person about four times over the past year, there is a certain comfort knowing she lives a block away. I’d hate to lose that.
“We might move, too. Rent is high,” I replied. “Maybe we’ll move in the same direction.”
We looked back at the sky to see if anything had changed. Natalie pointed to a light in the distance. “Airplane.”
“Are you writing?” I asked, giving the clouds a break from my scrutiny.
“Short stories,” she answered. “One about a guy I met who studies UFOs.”
We were silent for a while I rolled ideas for stories around in my head and thought about how my words are too slurred and strained to read aloud in my writing group.
Suddenly self-conscious, I said, “I know it’s harder to understand me now, but I’m working on using my speech computer. That should help.”
“I understand enough,” Natalie assured me.
Plenty of people were out in the streets as promised, but we were the only ones still holding out for stars, still gazing up. In the quiet, my mind wandered. It landed in the section of my brain that catalogues books (as usual), and I remembered a quote from the novel The Probable Future by Alice Hoffman. It goes something like: “People think they have to look up to see the sky, not realizing we are standing in it. They don’t know that the sky begins where ground meets air.” I wanted to share this with Natalie, but my voice was fading.
We stayed staring at the clouds for a while longer before Evan showed up to take me home. He kissed me on the head, then hung back so I could have another moment with Natalie.
“It was good to see you,” Natalie said by way of goodbye. Another thing I like about her: our time together can be valuable even if we only exchange a few words. It’s a liberating dynamic.
“You, too,” I said, my voice muted and rough.
I took a last look at the sky before going into my building, wondering over how, beyond the clouds, there are millions of stars and galaxies that I will never see. Nevertheless, I still have absolute faith that they are there, perhaps closer than I think if I’m already in the atmosphere.
Maybe my cure is like that, I thought as Evan helped me out of my wheelchair and into bed. Tucked in beside my husband, it was easy to imagine the cure is merely just out of sight, waiting an inch beyond my fingertips. Evan makes even the grandest hope possible; his heart is that pure. I gave his hand a love squeeze and silently promised that until the cure comes, I’ll keep looking up.
On June 10, 2015, I shared this message with my loved ones…
“Dear family and friends: I am so sorry to have to tell to you that today I was diagnosed with ALS. I am sad and scared, but also hopeful that I will live longer than the average ALS patient because mine is a disease mostly of the upper rather than lower motor neurons. This may mean my lungs will stay functional longer than the average 5 years. No matter how many years I have left, though, I know they will be beautiful because I am so well-loved by my husband Evan and all of you. Please keep me in your wishes, prayers, loving thoughts and light, and know that I am grateful to know you.”
Then my husband and I were swept away into the dizzying rapids of ALS care…
“Every three months, I will be attending a multidisciplinary ALS clinic so the progress of my disease can be assessed and I can learn new skills to keep me living comfortably. After a six hour first clinic visit in which I met with my doctor, social worker, occupational therapist, and physical therapist, I am happy to say my breathing and muscle tone are strong and my speech is in a range indicative of slower decline. At my next clinic in September, all of this will be assessed again. We are hoping for a very small amount of change, as this would mean I have slow (rather than average) progression.”
Those first months all came down to the question, “How long do I have?” That was no way to live…
“I’m fine,” I insisted, trying to be pleasant even though I was beyond overwhelmed.Deb shook her head. “Don’t settle. If you are having trouble buttoning jeans or using a fork, tell me. We will figure it out and keep you independent as long as possible.”Deb, my Occupational Therapist, was the 6th specialist I saw at Clinic the day everything changed. I was exhausted by endless assessments and frightened as I tried to make sense of all the information coming my way. Deb is not one for excuses, though, and I needed her pushing as badly as I needed the follow-up appointments with her where we plowed through a list of tasks that frustrated me and devised alternate ways to complete them. Deb changed my whole perspective on Clinic.
It is, as my neurologist Dr. Goslin says, a place to rewrite the story, even if we can’t change the ending.
We still check my progression, but this disease and the treatment for it no longer simply happen to me. What I want matters. My goals matter. Deb taught me never to miss a chance to address my concerns and needs so that I can live as well and as long as possible. These hours in clinic, these people who support and hear me, keep me doing what I love. I believe that they may even save my life, keeping me strong until a medication comes out to stop this nightmare.
I have hope, and it is stronger than fear.
My blog’s name is in tribute to Meg Rosoff’s novel, How I Live Now, the ultimate tale of resilience and determination. Just as the main character Daisy learns the true nature of loss (“If you haven’t been in a war and are wondering how long it takes to get used to losing everything you think you need or love, I can tell you the answer is no time at all”), but never gives up, claiming, “Fighting back is what I’ve discovered I do best.”
I plan to use this blog to chronicle my own battle and connect with other ALS warriors.I am especially eager to work with my readers to ensure pALS (people living with ALS) get the care and access to assistive technology that transforms painful days of surviving into vibrant days of living. Click How to Help to find ways to join the fight to defeat ALS and care for pALS.
Endless gratitude and love to my husband Evan, who held me when I was diagnosed with a terminal illness, rocked me when I cried myself to sleep for months after, and holds my hand at every single clinic. You are the reason I fight.
How I Live Now: Life With ALS 