I Am Not OK

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As I write this, I am sitting in bed, watching a funny show while checking my email, text messages, and Facebook notifications. It is the middle of the night, a time of terror for me, so I need the safety of the blue electronic light of my devices. I bask in the glow, then I drown my thoughts in sitcom banter and a whirlwind of multitasking.

Burying my dark thoughts is a high stakes game; if I don’t use the right maneuvers, the shadows win. No matter how scared I am now, it is nothing compared to how I will feel if the memories creep in. The memories open the floodgates of flashbacks, which will sweep me far away and back in time to that room where I was raped and nearly murdered.

I escaped with my life, but certain parts of me died there, namely the part that believed no one would ever hurt me. Well, actually I had never really considered that I could be a story on the news as easily as any other human. I held myself apart in the way we all must to some degree if we want to function in the world. Dwelling on our abject vulnerability would reduce us to terrified shells of ourselves.

Like me.

I can’t close my eyes in the dark. I can no longer write, I can’t focus on reading. All I can do is mindlessly watch TV.  I am afraid to sleep because I want to remain vigilant, and I know nightmares are waiting for me. I am resuming therapy, but I am desperate for a quick fix. I know that no miracle pill exists to give me relief, but I have been living with PTSD for eleven years, never knowing when it will become active and derail my life. I’m exhausted.

Evan says to go easy on myself. Getting frustrated with myself does great harm and zero good. I can’t berate myself into ending the episode. I guess it’s time to learn to show myself the compassion I apparently think everyone but me deserves. After all, if I am not on my own team when I’m at my weakest, how will I fight my way through this? I know that logically. Now I have to figure out how to live that truth.

Wish me luck. I need it.

 

Unabridged: “Is Your Doctor Hurting Your Mental Health? Why You Need an Emotionally Intelligent Doctor and How to Find One”

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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

 

 

 

 

 

Dr. Jeff, the Jugular, and Me

To be read with “Is Your Doctor Hurting Your Mental Health? Why You Need an Emotionally Intelligent Doctor,” originally published by ALS News Today, October 2, 2017

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 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.

A Dream

If my dream of collecting and expanding my best essays and turning them into a book ever becomes a reality, there are a few new topics I am dying to write about that are just too involved for my blog. I would devote a whole chapter to the ways ALS has changed my understanding of gender, and then another chapter on how the changes ALS has wrought upon my body fit into my lifelong, desperate quest for beauty.

Oceans Between Me and You

Lately, I feel like the little girl in this music video – that I have to put on a cape and mask just to face the world and my increasingly isolated place within it. Of course, that’s not a healthy or sustainable way to live, but I try all the same. Perhaps I try because I prefer the dull ache of wearing my cloak to the sting of vulnerability that comes with allowing the whole world to see my wounds. I doubt that I am alone in this, so maybe simply sharing the feeling will be helpful even if I can’t expose the words written on my back  for fear that they are true.

Sleepwalking

Tonight, after reading and listening to a podcast for a few hours, I felt stir-crazy from sitting for so long. I needed to get up. Specifically, I felt like trying out the Movements I saw on the Netflix series “The OA”. I was just about to do that when I remembered I could not get up.

This is not the first time I have forgotten my limits. Sometimes when I wake up, I plan on walking to the closet to pick out my clothing. It takes a few seconds of trying to swing my legs the edge of the hospital bed (how I miss the ankle-aching cold of morning floorboards beneath my bare feet!) to remember I can’t walk that far.

Perhaps I forget because I can walk in my dreams. Every time. However, even in my dreams, I am aware that walking is unusual for me. Usually, I dream that I am walking and then suddenly remember that, like Cinderella and her pumpkin and rag dress, my legs will return to being essentially useless by midnight. Sometimes, I even feel them weaken and my knees buckle. Even in my dreams, I cannot escape my disease.

Shrugging off the crushing weight of realizing my disability anew, I force myself to forget that I am stuck sitting and will continue sitting for the rest of my life, or until a cure is found. I look at Evan and my pets and try to let the feeling of being loved overwhelm the feeling of being trapped.

 

How To Pee From A Sling With Dignity

Immediately upon being diagnosed with ALS, I heard from doctors, support groups, books, and websites that this disease will steal my dignity. I wanted to be on guard against this, but there was a problem: I didn’t have a clear understanding of what dignity means. It was always just a collage of images: Dame Judi Dench’s face, a smattering red shame, and a slug trail across the canvas indicating where self-respect left the building. Only when I was in danger of losing my dignity did I feel it running through me.

The night I learned about dignity started with horrible muscle spasms in my limbs. Fresh out of marijuana, I had to fall back on Vicodin, which is less effective and leaves me unable to move because my balance suffers so greatly. I was only a few hours into my deep narcotic sleep when I woke up with a serious problem: a painfully full bladder.

“Evan,” I whimpered to my sleeping husband. “I have to pee really bad!”

“I’ll get the walker,” he mumbled, easing out of bed.

“I can’t stand up for the transfer to the commode. The vicodin gave me noodle legs.”  I tried to keep my voice steady, but I was afraid that if I didn’t get to the commode fast enough, I would have an accident. It had happened a few times at the beginning of ALS. This was before I started a medicine that silenced the fried nerves tricking my poor bladder into letting go.

Evan paused, considering. “We have to use the Hoyer lift,” he concluded. “It’s our only option.”

I wiggled to help Evan put the Hoyer lift sling underneath me. Normally, it would wrap around my legs as well and hold me in the fetal position while Evan used the lift to raise me off the bed and put me in the wheelchair. However, now that I needed to land on the commode, my pants had to come off.

For the record, hanging pantsless in mid-air in one’s bedroom is not nearly as fun as it sounds, especially when abrasive canvas ropes curl a person so her legs are smashing a full bladder.

“Hurry,” I squeaked from inside the sling, trying hard not to panic.

“I’m lowering you over the commode now.”

Except when I landed on the commode, I was on my back. The commode is narrow and shallow. It does not tilt like my wheelchair to catch me as I descend. Evan immediately raised me up, promising, “I’ll try again. We’ll figure it out.”

At this point, the Vicodin had me thinking I was becoming a chimpanzee baby in a swinging leaf-cradle. I was not really in a place to strategize, and I silently thanked god for Evan.

However, one more try, and it was clear I would not be landing on the commode. I started crying. Between the way the Hoyer irritated my bare legs and my burgeoning belief that I would never be able to pee again (courtesy of the Vicodin), I was losing it.

“I think,” Evan began, then paused just long enough that I knew I wouldn’t like what he said next. He started again: “I’m going to hold the bucket from the commode under you; you’ll have to pee like that.”

By then, I was sobbing. “I can’t,” I cried. “It’s too humiliating.”

“It’ll be fine,” he soothed. “I swear this will work out just fine.”

As he said these last words, I felt the bucket press against the back of my thighs. I cried harder, the pain in my bladder sharpening.

“You can do this,” Evan encouraged me gently. “I’m right here.”

Choking on the mucus and tears of my embarrassment, I finally let my bladder go, mostly because I could not control it anymore. My hair clung to my sticky face, tangling in my lashes, and I looked for patterns in the textured ceiling to get my mind away from this horror. I couldn’t escape my feelings, though. Something vital around my heart fractured.

“That’s my dignity,” I thought, imagining I could see it floating away.

And then…

“You’re doing so well, honey,” Evan said, full of warmth and pride, all because I was peeing into the bucket he held.

The sound of his voice arrested the pieces in their ascent.

“Everything’s going well. There are no spills. I’m so proud of you.”

The pieces hovered and, in the unhurried way of feathers, drifted back down to me.

Then it was over. Evan removed the bucket and put it back in the commode. He put his face by mine, his hands brushing my hair and tears from my cheek, then kissed my forehead and said, “It’s all over, and you did so well. Do you feel better?”

“Yeah,” I replied softly, my breathing evening out.

Evan used the lift to settle me back in bed. He pulled up my pants and tucked me in. After the rough sling, my sheets felt luxurious. As I fell asleep, my thoughts returned to dignity, and I finally saw it clearly. Now I know how to use it.

Here’s how to pee from a sling (or do any other wacky thing your heart desires) with dignity :

  1. Know the nature of dignity: Understand that dignity is a fine gold filament threaded through the spine and pulled taut so a person can stand straight.
  2. Surround yourself with people who value your dignity: Your sense of dignity can be delicate. It has to be nurtured.
  3. Have confidence: With the right attitude and a solid friend, you can get away with almost anything. Just hold your head up and think of running water.