Tag: Silence

For the Love of Dog

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I have become a tobii wizard. It’s true. Once upon a time, it took me fifteen minutes to type one paragraph. Now, I glide across apps, carrying and adding to my content, dipping into shortcuts to rearrange my words into uniquely crafted messages that sound authentic to yours truly – all at a speed that constantly wows clinicians. Despite my skills, though, using the tobii is still taxing work. I will never be fast enough to keep up with the natural flow of conversation. Still, I hurry and exhaust myself in the process.

However, there is one individual who eases the tension of the race to communicate because she is also nonverbal. For five years, Malka (introduced in “Someone to Watch Over Me”) has been my faithful, furry companion. On the surface, we don’t have much in common: she has four legs and I have wheels, she swallows her kibble whole and a gravity bag slowly drips formula into my stomach. I am becoming  more mechanical, and she remains pure, divine animal. But when we lay down side by side, we speak our own secret language. Eye contact and perked ears or my raised brows, touches, wiggles, and wags… There’s nothing we can’t say, and our talks are just my speed. She’s a source of solace like no other as I fight the monster inside of me, and sometimes when she looks at me, I swear she understands what I am fighting and her role in the battle. I am endlessly grateful for my silent soldier.

This song reminds me of my fur baby every time I hear it. It also reminds me of Evan, but pretty much everything does. “We laugh until our ribs get sore, sharing beds like little kids” even though everything outside of them grows scary. At least we have each other.

Getting Back My Voice?

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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!”

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

 

 

 

 

 

Cloudgazing

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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.

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Don’t Talk-A-Thon: Part 3

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“You do not need to leave your room. Remain sitting at your table and listen. Do not even listen, simply wait, be quiet still and solitary. The world will freely offer itself to you to be unmasked, it has no choice, it will roll in ecstasy at your feet” – Franz Kafka.

Those of you who participated in the Don’t Talk-A-Thon are sharing such a wide variety of stories with me. I must thank you again for being both involved and open about your experience. Like any well-designed activity that includes thoughtful people, the results were not entirely what we expected. I heard two main opinions of the hour of silence.

First, the most predictable and popular opinion: silence is uncomfortable! I know this is what I expected to hear, and I imagine the event organizers did as well. Being silent in a checkout line when a clerk is asking questions and you are fumbling for your credit card is awkward to say the least; you can practically hear people behind you wondering what is wrong with you. Or when you see your dog eating garbage and you are too weak to stop him and unable to call to your husband in the next room… that’s enough to make a person panic. Believe me. I’ve been there. Forced, unbreakable silence makes you dependent faster than you can imagine. Your position shifts to observer rather than actor in your own life, especially in a culture that values talking incessantly, quickly, and loudly. In conclusion, silence sucks.

This brings me to the second opinion of the hour of silence, the one that caught me off guard: there is peace in silence; why don’t we embrace it more often?

I know I said that I no longer find peace in silence, largely because choosing when to be silent is a luxury I hate losing. It makes every silence a tiny prison. Still, when a friend wrote the following, her words resonated with me the more I thought about them:

I’m silent a lot of time, between reading, writing and gardening. I wish we lived in a culture that didn’t value talking, incessant talking, so much. It’d be easier to hear what matters.

My first, sleep-deprived, frantic thought was, “This is not about gardening! It’s about my life!” I wrote back to her in what she would probably generously call a snappy tone.

And that’s the thing that got me thinking in those guilty minutes after clicking send… My friend is generous, and wise, and infinitely kind. Her ideas have always been worth hearing, her words respectful, so what was I missing?

I read her note once more and remembered her passion for gardening. Whether she is working alone or with family, it is clear she is most in her element when quietly nurturing precious little things. She’s got wit and sass – plenty of it – but she knows the value of balance. She understands what Franz Kafka meant when he said the world will unfold for those who wait for it quietly. However joyful a chatty dinner with friends can be, revelation and wonder don’t live there. They live in sitting side by side watching a sunset together, letting yourself feel deeply in another’s presence.

This is such an important reminder for both pALS and their loved ones. Those of us with ALS who are losing our speech will continue learning new ways to “talk” and asking for better technologies to give us our voices, but healthy people will always talk faster and louder than we can manage. We will still be in an endless race to keep up. So maybe, every once in a while, give us a rest. Take us to your garden. Put our stiff, curled hands in soil, and for once, let our breaking bodies be a part of creation. Join us every now and then in the silence until we forget to think of it as a cage. After all, the greatest, freest things are silent…

“See how nature – trees, flowers, grass- grows in silence; see the stars, the moon and the sun, how they move in silence… We need silence to be able to touch souls.” – Mother Theresa

Don’t Talk-A-Thon: Part 1

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Today is the Don’t Talk-A-Thon, a fundraising event in which participants vow an hour of silence in support of those who are forever silenced by ALS. In honor of this special event, I am sharing a very personal and painful story about the first time that ALS stole my voice. Remember, for me and countless others with ALS, our voices disappear permanently as a result of this awful disease.

The Sound and the Fury

Before ALS, I associated silence with prayer, reading, sleeping, being comfortable with friends. It was full of promise. Now, I know silence can be sheer terror. It falls like a knife from your hands to the kitchen floor, clattering around your bare feet. It paralyzes you with its chaotic power.

I knew it was coming. My voice is fading to nothing; that was established months ago. I hadn’t really imagined what it would feel like, though. I may have had a vague notion that permanent laryngitis awaited me, but I understand now that it’s so much more than that. I learned the truth when I spilled a glass of water by my computer (weak fingers). I couldn’t lift the computer out of the way (weak wrists). I imagined songs, stories, and photos being leeched out of the laptop into the puddle. Panicked, I called to my sister to come help me.

No sound came out. My tongue was heavy in my mouth. I felt like I had been slapped in the face, my breath stolen from my lungs. On the third try, I finally understood. This was my disease, a preview of what’s ahead. My horror rendered me motionless. My sister was in her room talking on the phone, but she might as well have been on another planet. I hit the alarm on my wheelchair, but Laura couldn’t hear me through her door. Malka raced to me, recognizing I needed help, but she couldn’t understand what was happening, and what could she have done anyway? I wanted to scream.

I broke into tears while Malka ran in frantic circles, panting hard in her desperation. A hot, fuzzy tingling sensation climbed the back of my neck, and all I knew was that I needed Evan. Despite my clumsy fingers, I managed to text him that I needed help. He was at work a few blocks away. He flew to me, his footsteps pounding down our hall faster than should have been possible. He crashed through the door and was by my side before I could blink away my tears, as if by moving quickly enough and wanting it badly enough, he could save me.

Evan held me and I sobbed for a while, calming down once I realized I was making a lot of noise with my crying. That was reassuring, but when I tried to speak, my enunciation was too messy to understand. My words sounded like a sad foreign language.

I resigned myself to the fact that I wouldn’t be speaking intelligibly until I recharged. A storm rolled in from the mountains, filling our valley with night dark clouds so it seemed far later than four in the afternoon. The lights in the living room became far too yellow and dim. My bird screamed then, and fluttered around his cage. I checked his food and water; there were plenty of both. His favorite nap area was clean. Laying back down, I felt awful that I couldn’t figure out what he needed. He chirped and squeaked, but it meant nothing to me.

I drifted off watching him flap around, never figuring out what he was trying to say. I remember thinking, though, just as I lost consciousness, that I had only narrowly escaped my own cage. My stomach rolled and I got dizzy imagining the door still open, waiting for me.