The man I kiss at midnight

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What you have to understand about the way I love Evan is this: I am desperate for him. I can’t shut up about him, and I don’t want to. I have heard people say that the sign of a strong relationship is that there is no sign of it on social media because the couple has nothing to prove. That makes me laugh because I am not writing about Evan for you, or at least not to convince you we’re happy. I’m just evangelical about my husband.

He is my laughter and smile and safety. The world could fall away, but if we were together, I would be just fine. I don’t have reason to be afraid anymore, and when my memories scare me, he holds me while I fight a villain only I can see.

He is the air filling my lungs, and he snatches my breath when I catch sight of him unexpectedly. When I fell in love with him, I felt like my real life had finally begun. I understood everything, who I was and what I could be with him beside me.

It feels like this: my heart beats him out, and he saturates every river of my blood until he marinates each cell. He turns my blood into champagne. That’s not pretty language. It’s science, a completely accurate description of a  phenomenon that I think about and live every single day.

I don’t care if he loves me as much as I love him. I am just glad he wants to be with me. More than anything, I want him to be happy. Because of that desire – for him to have the best of every single thing under the sun and exist in total bliss – we had this conversation:

Rachel – I read about a woman who remarried barely two years after her husband died. I guess she missed having a spouse she could be normal with because she hadn’t had that the whole time her husband was sick. I want you to have a normal, full life. I am like a physical nonentity. You deserve better.

Evan – You’re not a nonentity! How can you say that?

Rachel – Physically, though, I just take up space. I can’t even hug you. How can this be enough for you?

Evan – It’s enough. It just is. The way you look at me makes me feel hugged.

Rachel – That’s one of the best things you’ve ever said.

His happiness is my greatest life goal. As for me, I’m happy to just stare at him while he reads, cooks, or sleeps. I know I look sweet, but don’t let that fool you; he makes me feral and vicious. I would do absolutely anything to secure his happiness without hesitation. I can forgive a lot, use my empathy to understand where someone else is coming from in a conflict, move on. All of that goes out the window, though, when someone wrongs Evan. I never forget either. May 2012, Washington DC, Evan organized a massive event to train grassroots activists, which was attended by 523 citizens from around the country. Evan was troubleshooting a problem in the lobby when his colleague swooped in and began bragging about the 523 advocate training binders that Evan had actually created. He has been over it for years. I am not. So, yes, you could say I am more than a little protective of him.

His existence makes me believe in a higher power because there is no way that he – or we – are products of chance. He wraps around the chunks cut out of me by a painful past and lingering insecurities. I honed sharp edges to protect myself before him, and I enjoyed the power of a preemptive strike. However, time with him has dulled those parts of me, which I allow because in my new life, I don’t need razors.

Falling in love with Evan also restored my lost faith because I have to believe that someone is watching over him every second we’re apart. Otherwise, I would go mad, though losing my mind over my love of Evan isn’t completely out of the question…

I never want to live in a world where he is farther than a phone call away. Ideally, that sentence would read “I never want to live in a world where he is farther than 20 feet away,” but I am aware that we need our own identities. This is probably the best indicator that I am not completely unhinged regarding Evan. I am in love, infatuated, even a little obsessed, but not crazy. And if I were crazy, well, I wouldn’t mind at all… as long as it didn’t bother Evan.

And now, a song that always make me think of my beloved Evan:

Okay, I lied. There is one more song that is perfect! However, it’s by my favorite artist, who Evan strongly dislikes… But it is my blog so, play my heartstrings, Iron and Wine!

 

 

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

 

 

 

 

 

A Day With ALS

I’m feeling inspired by writer and ALS advocate Sarah Coglianese’s response to the question, “What do you do all day?” The breakdown of her day made me realize that how I live now is incredibly foreign to the healthy people reading my blog. I have shared what Virginia Woolf called “moments of being”, micro-stories that I hope give you a sense of how it feels to walk in my shoes. However, I have yet to hand you the structure of my days . Here is a rough schedule for my average, exhausting, rewarding day.

Morning:

  • Showering with the help of a professional bath aide
  • Getting dressed
  • Putting on foot braces to stem foot drop
  • Taking regular medicine and trial medication
  • Eating breakfast if I have an appetite

Afternoon:

  • Taking medicine
  • Eating lunch
  • Breath Stacking
  • Physical therapy (PT)
  • Appointments or correspondence regarding medication
  • Planning fundraising events

Evening:

  • Taking trial medication
  • Breath Stacking
  • Preparing dinner
  • Eating dinner with my husband and sister, in-laws, and friends

Night:

  • Taking medicine
  • Hygiene tasks
  • Changing into pajamas
  • Writing in bed while not a creature is stirring, not even a dachshund.

Every day is a roller coaster at a shoddy carnival. Every day I have to choose again and again to feel the joy of the summits rather than the stomach-clenching pain of the drops. I feel a sense of accomplishment on many fronts, so I push myself to bask in that satisfaction. I have maintained fewer old friendships than I had hoped, but I am glad to spend time with new friends. I’m fighting isolation, and I am proud.

Sometimes, though, the valleys of this poorly maintained ride are dark and lonely. The rails rattle in a disturbing way, but I am helpless to do anything about it. I may vomit trying to eat because my appetite is so poor. Depending how stiff I am, PT can be frustrating. I often get worn out well before dinner time, which causes the quality of my speech to degrade. I also need help with almost every single task, so I am never, ever alone. This lack of privacy is emotionally exhausting beyond what I, a true extrovert, thought possible.

Yet I am starting to learn how to manage the roller coaster, figuring out when to grasp the shoulder harness until my nails crack and when to let go, throw my hands in the air, and shout in joy. ALS is a wild, deadly ride, but not one that will break me – whether or not l survive – because I know to reach for the sun whenever I’m hurtled towards it.

The Waves

Far From FDR

Lately, I’ve been worrying a lot about my identity. So much is changing at what feels like breakneck speed. My body in particular is alien to me. I swing between thinking I am an ALS research guinea pig, a robot incorporating new mechanisms to extend the life of what is clearly a junker, or, most recently, a plain old invalid.

My sister is not OK with this.


Me: Am I an invalid?

Laura: Rachel, what are you talking about? They haven’t had invalids since FDR. Besides, I don’t we are supposed to use that word anymore.

Me: Oh… then what am I?

Laura: What you’ve always been. You’re a woman with pursuits.


It was pretty unexpected, a little Victorian, and a lot perfect. I remembered then that I’m more than braces, machines,  and physical therapy exercises. Maybe I’m not exactly what I’ve always been like Laura said, but I’m also not less than I was. And as far as pursuits go, I still chase dreams. Now, though, I’m racing after them in a 400 lb vehicle… I like my chances.

 

 

 


Disclaimer: No offense intended towards FDR, who, according to my grandma, totally rocked.


 

The Kingdom of Childhood

For some reason, this lovely spring weather makes me remember all the things I love about teaching: morning meeting and yoga, book club and literature circles, zumba and dance breaks every half hour to keep our energy flowing, writing workshops, and of course, just being with the kids. Listening when recess ended in tears, geeking out over Harry Potter, eating lunch together…

Maybe it’s rushing back to me because this is science fair season. I have so many memories of wearing my very best “thrilled and impressed” face for hours during the fair. Then there were the months beforehand when I was a test subject for at least five experiments in which I learned I am not colorblind and I do like chocolate chip cookies.

I miss it all. How lucky I was to spend my days this way before ALS stole it all away.