Category: Friendship

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.

Draw on the Magic of New Years to Improve Your Health (Even if You Have ALS)

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I have never really been one to get excited about New Years. Early on, my mom instilled in me a lasting fear of the hordes of drunk drivers careening about all night. I am now 30 years old, and to this day, I have never been to a New Years Eve party I couldn’t walk to. I will probably continue this habit for the rest of my days because no one can prove that it hasn’t saved my life.

Rachel does a Sparkler Dance

2006 ; The acceptable distance to a New Year’s Eve party = My front porch

As for New Year’s resolutions, I remember my dad saying every single year, “I don’t see the point of making resolutions. If you need to make a change in your life, don’t wait. Do it immediately.” This advice, combined with my perfectionist tendencies, made me a reflective, proactive individual.

Lately, though, I have been thinking about the value of making resolutions. I still agree with my dad’s advice because, frankly, if you’re only taking stock once a year, you’re not living your best life. However, when everyone around you is examining their lives and discussing changes they want to make and goals they want to set, a uniquely supportive environment forms. If you randomly tell someone at any other time of year that you want to be better about keeping in touch with family or watching less TV, you just don’t get the same reaction as you do if you share those goals as resolutions around New Year’s. This time of year lends gravity to decisions. It signals that this is a Big Deal to you, which can elicit bolstering enthusiasm from your social circle or prompt advice and conversation. Best case scenario, you may end up with a resolution buddy who loves your idea and hops on board. Having someone to help you through rough patches, prevent backsliding, and celebrate successes with can make all the difference in the world.

Because mental health is on my mind more and more, I have been thinking about what gets me down, what triggers my depression and PTSD, and how I handle (or more accurately, don’t handle) stress. I began research new-to-me ways to improve my mental health and maybe even my physical health as a result.

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This NY Times article offers suggestions on ways to be healthier in 2018 that even those of us with ALS can try. The ones that appealed to me the most were:

  • GETTING BETTER SLEEP 147154 – There is a LOT of information on this page. It is divided into five sections, which you can navigate by clicking on the submenu text immediately beside the title in the black bar. Or you can just hit the down arrow. I especially liked “How to Wake Up,” which is nested under the section called “Morning Lark or Night Owl.” (See what I did there? Nest? Lark? Owl? You’re welcome.)
  • CONQUERING NEGATIVE THINKING 151155 – The art of acceptance is a tough one to learn, but if I want to stop the cycle of dark thoughts that keep me up at night, I better start learning.
  • REDUCING STRESS 151156 – Whatever your anxious little mind likes to obsess over, from relationships to your health, there’s something here to help. Now the key is not to stress about reading this whole article.

One of the ways that the article lists to decrease stress on the body and mind is yoga. That may seem impossible for many of us with ALS, but chair yoga is real thing. I recommend exploring video guides on YouTube by searching “gentle chair yoga,” which will yield countless results. I especially enjoyed this ten minute wheelchair yoga video. The neck stretches felt heavenly (using the Tobii requires me to keep my head very still, and after a few hours of writing, I get vicious neck cramps).  I could not actually do most of the movements because I can barely move my arms, but I think a caregiver could help me. I’m super excited to see if I can get in Eagle Pose. Before ALS, that was my favorite way to ease back pain. Note: it  is important that you do close your eyes when the instructor tells you to. This will allow you to focus on the sensations of the practice.

A new approach to preventing and identifying depression

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Depression is a sneaky beast. It’s the monster beneath the bed, waiting until you’re vulnerable to grab you by the ankles, drag you into its dark, misty kingdom and leave you to wander alone.

I’m just stumbling out of a two month-long bout of depression. I knew I was at risk. In fact, the entire ALS community is at risk according to an extensive list of risk factors 125 complied by the Mayo Clinic.

Chronic illness, major life changes, and stress or trauma are all risk factors for developing depression. Sound familiar? Of course, genetics plays a role, too. My family has a strong history of depression, and I am a link in the chain.

On top of understanding that I was vulnerable on multiple fronts, because this is far from my first rodeo, I know the Mayo Clinic’s official list of symptoms of depression (available here) 126 by heart.

A few symptoms most relevant to my experience are:
1. Persistent sadness
2. Lack of concentration
3. Irritability

Still, despite battling depression for over a decade, I didn’t see the beast coming or even recognized it when it took over my life. The world just grew dimmer by the day. With all of my experience, how did this happen?

I have learned that once the fog of depression envelops a person, seeing the world clearly, let alone recognizing what is happening to you, can be next to impossible. I kept a diary during this round, and looking back, it’s clear that I didn’t link my actions — the way depression manifests in me — to the symptom list.

For example, here is an excerpt from one of my diary entries: “My sadness for my husband Evan is absolutely crushing. If I really think about his situation of watching me decay, if I empathize and imagine myself in his shoes, I feel like I’m dying. Knowing he cries in the car makes me sick. Imagining I’m the one losing him is so unbearable, I end up sobbing to the point that I can’t breathe.”

Read my entire Depression Diary127 if you would like to gain a more concrete understanding and my experience living through a depressive episode.

I knew I felt sad, but even though these fits of crying happened several times a day (meaning my sadness was clearly persistent), it just didn’t occur to me that my feelings weren’t landing in the normal range of human emotion. To learn more about the difference between sadness and depression, click here128 to read Guy Winch’s article “The important difference between sadness and depression… And why so many people get it wrong.”

After a few weeks, I was in agony. I felt like some dark, toxic thing was gnawing through my chest. I have felt like this before — many, many times. However, it wasn’t until my concerned doctor made a house call after I kept canceling appointments that I realized I wasn’t just experiencing difficult emotions. Rather, I was sick and need to be treated. She pointed out that since I was already on antidepressants, a small increase in dose could have me feeling better quickly. Now, I am well enough to reconsider my treatment plan, and I have decided I could benefit from therapy.

My story looks like it will have a happy ending, but there was so much needless suffering along the way. Plus, if my doctor hadn’t come to me, I would still be wandering in the fog of depression, unable to see the landmarks that told me where I was. Knowing that everyone in the ALS community is at risk for depression, I propose a different way to go about identifying and, subsequently, seeking treatment for this disease. Rather than relying on self-insight when our vision is at its most blurry, let’s learn to watch out for each other.

People living with ALS125129, family members, and caregivers should become well-versed in the entire list of symptoms, because each person may have a different set of symptoms. One doesn’t actually even have to be sad to have depression. They may oversleep, gain weight, and lose interest in work and hobbies. If we are all aware of the different ways depression can manifest, we will know that sudden, dramatic changes in behavior may be due to a sicknesses that needs to be treated as soon as possible.

Every day, we fight an epic battle against ALS. If we have any hope of achieving a high quality of life in the midst of this struggle, we need to keep our minds mighty and well. As in every aspect of this war, we can only succeed if we watch over each other.

This piece was originally published by ALS News Today in my mental health column, “The Mighty Mind.” In my next column with ALS News Today, I will discuss different types of treatment options for depression

My Depression Diary

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Trigger Warning!

Forward:
When just over a month ago I sensed that my mind was changing, I was overcome with a frenzied need to record everything I thought and felt. Even before I understood that I was depressed, I realized I was going somewhere that outsiders could never truly visit. I became consumed by the need to write a message from the inside that could maybe serve as a map or even just a sign that says “Keep Out! Here Be Dragons!”

Not so long ago, sharing my diary with strangers online never entered my mind, not even in my worst nightmares or wildest dreams. It was that impossible. However, that was before ALS. The same rules – even my own most personal code – no longer apply. I am braver because I am a soldier now. I take risks because that’s how you fight. This way, even if I die before the cure comes (and it will come), I’ll go knowing I made the path less lonely for my fellow soldiers and just a little easier for those who come after me.

I didn’t sign up for this war, but my enemy means to kill me, so I must give everything I have and am in this fight. Privacy is a luxury long gone. I will share my most secret thoughts and vulnerable moments in service of my fellow soldiers and the people who make my life worth fighting for. Right now, that means showing you what it’s like inside the beast that senses we are battle worn and easy prey. My hope is that if you read my diary and recognize yourself or a loved one in these words, you will realize it’s time to call for reinforcements, whether in the form of a psychiatrist who prescribes antidepressants, a therapist who talks you through the climb out of the pit, or a priest or pastor who provides solace and guidance.

To learn more about preventing and identifying depression, read my ALS News Today column12212627122128. I will share a follow-up post in the next few weeks on different types of intervention and how to choose which is right for you.

Now brace yourself. We’re going in.

Entry 1:

I am choking on the strength of this episode. It wraps ever tighter around my throat, just like his hands. 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.

Entry 2:

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, or at least that’s what I tell myself, 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.

Entry 3:

Thinking about “the event” again. I guess writing “rape and attempted murder” became too clunky since I keep doing it again and again. I wish there was a word for that crime.

Here’s something weird: I had actually been in that room before. It had a great view of the Gulf of Finland, so I took a picture. I put in black and white because I thought it made the photo look artsy. During “the event,” I turned my head so I was looking out the window at that same view. I remember making that choice because I wanted to escape my body. Maybe I succeeded because when I look back, I can only remember the black and white photo. The memory lacks color and sound. In fact, that whole night remains in perfect silence, as if I stepped into the photo because inhabiting my skin was that unbearable.

I also sensed if I looked up, I would not survive. I couldn’t articulate it then, but in hindsight, I realized that it I were to look, I would have to confront what he was doing, and I didn’t want that image in my head. If I looked at him, the image would take over my brain like a fungus I saw on a nature show. The fungus commandeers the ant so that it becomes disoriented, out of touch with reality and its purpose. Ultimately, its new biological imperative is no longer survival. It follows the final orders of the sadist in charge by climbing as high as it can. Then, when the ant is paralyzed by vertigo and weakness, it gives in. The fungus cracks the ant and blossoms, sending its spores far and wide, aided by its victim’s lofty position.

Summary: if I looked up him, the images would have devoured my mind until I forgot who and why I was, creating so much pain that suicide started to look attractive.

That kinda happened anyway, though…

Entry 4:

My doctor came to see me. I can’t believe that I didn’t realize what’s going on until she talked to me. It is classic crying, lack of interest in anything, wanting to stay in bed depression. It is not the most severe I’ve had. On a scale of one being fine and ten being suicidal in the mental hospital (true story), it’s a five.

The PTSD fuels the depression by isolating me. I’m so mad at myself. I want to be stronger and fight this off with logic, but everything is scary. It makes me think of Alias Grace by Margaret Atwood. There’s a great quote when Grace says something like, “Quilts are so bright like war flags, I think we put them on beds so you take notice. You see the warning that the bed is a most dangerous place.”

That’s how I feel when I get in bed. I still feel the danger of a crime long since committed against me, so I stay awake on guard all night. When dawn comes, I finally surrender to sleep. The end result of all this fear and hyper-vigilance is loneliness. I am only awake when my friends, family, and beloved husband are asleep. I want to have friends over, go write in the beautiful library, and spend awe-filled hours in the art museum. I perpetuate my isolation by refusing to reach out to them.

I also play this game where I don’t contact them and then wait to see how long it takes for them to contact me. The longer it takes for them to contact me, the less they obviously care about me. It’s a shitty game, but I can’t stop playing.

Entry 5:

I feel like a raw nerve in pain after any interaction. I wish I could read substantial books. My intellectual hunger still rages (a good sign), but my concentration is too poor to make it through even the first page of any appealing titles.

Also, lately the library doesn’t have e-book versions of what I want, and I took this REALLY personally. I reacted as though this was a commentary on how little society values me as a disabled person. I am hung up on that anyway because of all the times President Trump has negated the value of the people with disabilities. From mockery to attempts to gut Medicaid and defund ALS research… I don’t want to let him me this way. It’s just that everything hurts me more now that I am depressed.

Entry 6:

I am starting to think this is happening because I am repressing sadness, which is a pattern for me, which I discussed in the post “Leaves in My River, Stars in My Sky123127128123129.” I mean, the major thing that I have been crushing for years is sadness for Evan. If I really think about his situation of watching me slowly crumble, if I empathize and imagine myself in his shoes, I feel like I’m dying in a way ALS has never achieved. Knowing he cries in the car makes me sick. I sob hysterically until I can’t breathe. Imagining I’m the one crying in the car because I am losing him is unbearable, and I am grateful that I am the one who has ALS.

Entry 7:

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.

3 Things to Be Grateful for This Thanksgiving If You Have ALS

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Gratitude

Those of us living with ALS or loving someone who has it are gratitude experts. Don’t misunderstand me. We have our dark, bitter moments. As we catalogue our blessings – the precious time we have had on earth, our remaining abilities – we inevitably think about the other side of the coin. Yes, I have lived 30 full years, but how many do I have left as this disease does its wicked work? I can still move my legs, but God, do I miss walking and dancing.

This post is meant to break us and our loved ones out of this cycle. This Thanksgiving, let’s be grateful for the following:

1. The exciting research currently underway

In the three years since the Ice Bucket Challenge, we have seen more progress in research about the causes of and treatments for ALS than I ever dreamed of when I was diagnosed. Just a few months ago, the FDA – with guidance from the ALS Association – approved Radicava, the first new drug for ALS in over 20 years! To keep up with advances in research as well as drug trial news, follow these organizations on Facebook or Twitter: The ALS Association, ALS TDI, and ALS News Today.

2. We are not alone

In addition to the local monthly support groups hosted by The ALS Association, did you know that this fantastic organization arranges fun events for ALS families year round? My chapter hosts a Zoo Day and a picnic gathering at a local farm. Follow your local chapter on Facebook or Twitter so you don’t miss out! You can also get support without even leaving home by joining online support groups. I belong to six on Facebook!

3. Caregivers show us love every day

I am constantly amazed and humbled by the devotion of my caregivers. Whether they are family members, friends, or professionals we hired through an agency, they work tirelessly to see to my personal needs, from feeding me to toileting. What’s more, they do it in a way that preserves my dignity. Then, I think of all the ways they support Evan. An ALS spouse is never truly off duty, so it’s easy to get behind on housework and neglect self-care. My caregivers make such a difference in Evan’s quality of life by helping out with laundry and staying with me while Evan runs errands or takes a little time for himself. Make a list of everything that your caregivers do for you. It will give you something to do during the four hours your turkey is it the oven.

On that note, remember that November is Caregivers Appreciation Month. It’s not too late to thank your caregivers with a heartfelt note or some flowers!

 

This post is dedicated to my caregivers: Amelia, Aubrey, Brenda, Cindy, Evan, Mallori, Melissa, Paige, and Renee (AKA my mom).

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

 

 

 

 

 

Feeding Tube Foodie; or How I’m Being Lured to the Dark Side

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The sound of the microwave whirring to life sliced through my interest in the book I was reading in the living room. I made a beeline for the kitchen where my husband Evan was clearly up to something delicious. (it was a good day for me in terms of hand strength, so I was able to steer Ruby, my beloved power wheelchair, myself) Just as I suspected, Evan was warming up some leftover pizza.

“Hey, hun. Is that your dinner?” I asked. I knew I had to play it cool to keep Evan from becoming suspicious.

“That’s the plan,” he replied, settling in at the kitchen table.

“I think I’ll just hang out here while you eat,” I said, rolling up to the table. “Hey, as long as I’m here, can I watch you eat?” I grimaced. Real smooth, Rachel.

“Um, I guess.”

“Cool, cool, cool.” Yes, keeping it casual. This time, I would control myself. I would NOT make it weird.

Evan took a bite, then another. I was riveted.

“You’re really starting at me.” He shifted in his chair.

I made a conscious effort to blink before saying, “You know, I was just wondering if you can try chewing slowly.”

With obvious discomfort, Evan complied with my request. One bite later, he stopped. “You’re leering at me. It’s freaking me out. I am going to eat in the living room.”

I huffed in frustration when he walked away. I miss food desperately, and I am always looking for ways to hold onto at least the memory of the joy of eating.

At my most recent clinic, my speech therapist put me on a pureed foods diet after she discovered that I can no longer move my tongue from side to side. Losing that motion makes me unable to sculpt my food and move it between my teeth. As a result, I have little control over where the food in my mouth goes. I am at risk of choking if I deviate from the pureed foods diet because anything I eat can slide to the back of my throat and block my airway. Even crumbs are a danger. Then there is the possibility that tiny particles of food may slip into my lungs without me even knowing it. This puts me at risk for pneumonia, which can be fatal to someone with ALS.

To protect my lungs and prevent choking, I get most of my food all of my hydration through my feeding tube (I can’t drink water because it moves so quickly that aspiration is inevitable). I eat orally at dinner, usually a pureed soup my mother-in-law Brenda made for me that morning – she concocts everything from broccoli and feta soup to savory butternut squash puree – or a fruit smoothie. I get a decent variety of flavors, but the lack of texture is starting to get to me, I fantasize about chewing on a piece of cheese or sinking my teeth into crisp slices of tomato, bell pepper, zucchini, and apple. Lately, I am nursing an obsession with all things toasted, specifically paninis. The longing keeps me up at night, and I suspect it’s chipping away at my sanity, which led to this, ahem, eccentric text exchange with a friend. Read on to witness the burgeoning madness of a Foodie on a feeding tube…

Me – I would do unspeakable things for a panini.

Melissa – Has anyone ever invented something like a chew toy for humans?

Me – Someone really should. I want to bite something and feel it crunch.

Melissa – I feel like I could put a panini in some mouth safe baggy and hold it in your mouth to feel on.

Melissa – Or I could just put a panini in your mouth and then take it back out, over and over, with purée in between so you get full.

Melissa – These might be very foolish, even offensive ideas. I just would love to please your mouth. I feel so strongly for food and I can just imagine the panini longing.

Me – no, I love it! I would drool all over a panini bag.

Me – I am desperate and the more desperate I get, the more violent I am willing to be to get what I want.

Me – I am like bargaining with some powerful dark force. ” if you let me eat a panini, I will burn down Chicago.”  **

Melissa – I can’t say I know what you’re going through, but i know it can’t be easy! When I’ve had to not eat solid food for just some period of time, i went mad.

Me – I always saw myself as a force for good, but it has taken so little to push me over the edge. Am I truly a slytherin when all my life I thought I was a hufflepuff?

Melissa – Serious hunger can push any human to the brink.

Me – Exactly. My teeth are depressed. They have lost their purpose and they are not taking it well. I think I feel at least two spite cavities forming.

Me – Can I put this conversation on my blog? I think it is a wonderful representation of my life as a feeding tube foodie

Melissa – I’d be honored.

 

 

 

Oceans Between Me and You

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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.

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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Leaves in My River, Stars in My Sky

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I hate crying – it’s an uncontrollable language of pain, and I lack enough control as it is – but I was crying tonight. I’ve heard that no single emotion is inherently good or bad. We should acknowledge them all, pick each up like a leaf from a stream, think, “It’s just sadness,” then put it back down and let the water take it away. However, I like to pick up the Sadness Leaf, crush it, and bury it in the dirt. Out of sight, out of mind.

Scrolling through my Facebook feed after dinner, I found myself thinking about all the people who stopped speaking to me after my diagnosis, and tears, undeniable evidence of sadness, came. Mostly I stay positive. My doctor and I believe I will survive long enough for a treatment or cure to be developed. That possibility and the love of my friends and family keep me fighting. Still, the deafening silence from people I grew up with, celebrated holidays and birthdays with, listened to when they were troubled… it hurts enough to make my throat clench and my eyes sting. It starts a rush of unwelcome memories of staying up late on the phone, talking a friend through a divorce. Then I recall walking down the aisle preceded by bridesmaids who have faded like ghosts from my life, existing for me now only in photographs. Friends I traveled the world with might as well have stayed on the other side of the ocean; they are that distant from me. These people I loved drifted away like debris on a beach in the first high tide after a tempest.

In the quiet after the storm of my diagnosis, my old life washed away, and I learned the truth about those I love. People who are far away or have been out of touch resurface, and I realized that for all the people nearby who are too weak to support me, there are others, scattered like stars on a winter night, who have been glowing for me this whole time.

There is the college friend I met so many years ago and now only speak with occasionally, though we once talked every day. He was the one to hear the news and call, crying. No words, just sobbing because that said it all. I cried under cover of his tears, safe because I couldn’t hear my own.

Then there is the woman I knew only for one summer back in California when together we learned to cook like adults, follow a recipe, peel a mango. She flew to me in Oregon, made her super secret special cake, and promised to stay with me until the end and hold my husband’s hand at the funeral, whenever it may come.

Seven years ago, I met a girl in a karaoke lounge in DC, and we sang Britney Spears (ironically, if that’s what you need to believe to keep reading this post). We both moved, sometimes to the same cities. We campaigned together, hit all the vegan restaurants we could find, and lounged in parks with a pile of books. She stayed up late for a month after my diagnosis to answer my desperate 2 AM phone calls. She’s coming to visit this weekend.

Last month, my in-laws moved across the country to live five minutes away. My mother-in-law feeds me pills in yogurt so I don’t choke on water and helps me clean my teeth. Then there’s my father-in-law, who brings me desserts several times a week to keep my weight up and once spent a whole day assembling my hospital bed.

And last in this post but not in my life, the aunt and uncle who surprised me by sending a box full of starfish. They live at the beach where my family went on vacations. They must remember how I couldn’t end a week at the beach without bringing a starfish home. I brought a starfish with me when my husband and I moved 3,000 miles away to remind me of my childhood, but one night Malka ate it for reasons we cannot fathom. Receiving these new starfish reminded me that I and my precious past are not forgotten.

Allowing my mind to linger on these winter stars introduces some happiness and gratitude to my swirling thoughts. They are more leaves in my river, floating alongside and softly nudging the painful ones. They make it easier to unclench the fist I made around that first sour leaf, to let it go and trail my fingers in the water to feel whatever the current holds. It drifts on, benign and unremarkable.

After all, it’s just sadness.