Category: Memories

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.

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.

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

 

 

 

 

 

Three Dreams and A Dragon

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When I was thirteen, I bought a small, blue, canvas-bound book whose title, scrawled in loopy silver script, read, “The Interpretation of Dreams.” I purchased it because every morning, I awoke with vivid memories of three, sometimes four, dreams. About half of them were nightmares, but they didn’t trouble me as much as what I called the Sagas. In those dreams, I lived entire lives, and when I woke up and realized that none of it was real, the resulting devastation was almost as intense as if I just lost actual friends, a husband, children. I hoped that I would find answers about what the Sagas meant and achieve peace by way of the knowledge.

I never found my answers; when I started taking anti-depressants at age fourteen, the Sagas disappeared, so I abandoned my research. However, the nightmares began to run rampant.

Lately, my nightmares have been especially painful. I have three that take turns playing in my nocturnal theater. First, I dream that fierce predators escape from the zoo, lurking the city’s streets, lying in wait for unsuspecting humans to cross their path. Unfortunately, I’m the only one who knows this, so it falls to me to protect my husband and sister even though I don’t have a single weapon.

Next up, I awake on a dark beach. I lay on the rough sand, utterly confused by my surroundings. Then a pair of hands reach down to help me up. I realize too late that they belong to my rapist. Raising a hand to caress my cheek, he says, “We’re the last people on earth. It’s just us. Now we can be together forever.” It’s then that I notice I’m wearing my wedding dress.

The worst dream starts before I even fall asleep. As I drift, memories of the words of my last Lower School Director and the Head of School echo in my head…

“Your students are bored.”

“Their parents lack confidence in you.”

“Maybe your personality is the issue. Go observe the Spanish teacher. Try to be like her.”

“You lack presence in the classroom.”

“Have you considered being a librarian? Then you won’t work with children every day, and you can be around those books you love so much.”

“You’re too academic.”

“Try not to look so frail. Stop hunching over your cane.”

“Are you really teaching if the kids aren’t learning? ”

“Fifth grade is an important year, and we need a teacher so fantastic that families don’t even think of transferring to another school for sixth grade. There are five families thinking of leaving – you’re not a strong enough teacher.”

“I’ve been disappointed in you from day one.”

Then, when sleep finally comes, I am teaching in a classroom with glass walls. I don’t have a lesson plan, and when I see the Lower School Director and the Head of School watching me, I panic, making one stupid mistake after another, knowing each is a nail in my coffin. The dream fades when memory wipes away the fear and reminds me that it’s over now. I survived being kicked to the curb, and – awful as it was to end my career on a low note – they can’t hurt me anymore.

I don’t need the book to pick up the themes these dreams share; in each one, I am caught off guard and helpless. That is the essence of ALS. No one is prepared for the diagnosis (most cases can’t be tied to a family history, and lifestyle seems completely irrelevant). To make matters worse, the diagnosis comes with a decree of helplessness since there isn’t a thing you can do to fight back. I’m guessing that I am reliving the trauma of the diagnosis, but I don’t think it has to continue.

I recently realized that I am not helpless, not by a long shot. How many pieces have I written detailing my commitment to my range of motion exercises, my eagerness to participate in drug trials 135164, my openness to new medications and protocols 136165 to manage my symptoms? I use the cough assist 137166 to keep my lungs strong, my feeding tube to maintain proper nutrition and hydration, and my tobii to prepare for when I lose my ability to speak. I am not sitting on the sidelines watching this monster consume me. I am fighting the dragon with a small dagger, slashing and slicing bit by bit until I bleed it dry. From now on, I will hold this gruesome, glorious image in my mind as I fall asleep. Maybe then I’ll dream of slaying the beast.

A Dream

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

Sleepwalking

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

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

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

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

 

Hands: Part 2

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As long as I’m listing what I miss using my hands for, I might as well ramble on a bit more. I miss the responsibility my hands gave me. I miss choosing fruit at the farmer’s market: laying a smooth, firm tomato in my hand, rubbing my thumb over the amber fuzz of a peach, picking up produce to examine the color. Raising greens and herbs to my nose is a sweet little luxury I never knew to cherish. Sometimes at the farmer’s market, Evan would buy me flowers. One time, he bought me a three-foot tall sunflower. I held it over my shoulder like a parasol. Usually, though, he would buy me white hydrangeas – the flowers I carried on our wedding day. I long to wrap my hands around them again and hold them in front of my heart.

Then, of course, the cooking was such a joy. I carefully made a menu and gathered ingredients at the market. Next, I used ceramic knives to slice through the fruits and vegetables, tomato pulp leaking onto my cutting board, strawberry juice staining my butcher block. I miss the rough wooden spoons I use to mix beans, lentils, and spices in with my market finds.

I even loved cleaning up after cooking. My mother-in-law, Brenda, bought me an amazing book for my birthday. Basically, it gave formulas for how to make household cleaners, disinfectants, scrubs, and detergents using natural ingredients like lemon, white vinegar, and castile soap. I used to slice and squeeze lemons, collecting the juice in empty jars I saved throughout the week. I would add in the right amounts of soap or water, vinegar or salt, and make pretty labels for them. I loved how my hands smelled clean and a bit like sunshine after I spent a few hours scrubbing the bathtub, all the sinks, countertops, and table. At the end of all that cooking and cleaning, my hands were dry and tired, and I felt at peace, like I had captured the present and lived in my senses with my human needs. I still find serenity in the sound of a rough sponge scrubbing.

I also miss scratching and massaging my dogs, but I cannot talk about that too much without getting sad. I pet them with my knuckles now that my fingers curl in. I hope they can feel that I love them. Honestly, though, I am afraid they won’t feel my affection and will grow away from me. My hands were our only common language.

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Hands: Part 1

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If I had full use of my hands again, the first thing I would do is hold Evan’s hand. It is impossible to interlace our fingers when mine are so weak and wobbly. I also miss my hands as instruments of creativity. I used to sketch, paint, and even sculpt. I wanted to pursue my pottery, especially raku technique, but I did not make time for that endeavor while I was healthy. Teaching took up most of my time, not that I regret the hours I spent grading papers and planning lessons. I am lucky to have had a career I loved so dearly.

If I had strong fingers, I would sew. I loved sewing aprons for my mom and gifts for family and friends. Of course, the major advantage of strong fingers (in my opinion as a writer) is being able to type. I am grateful for the eye gaze technology that allows me to write without relying on my hands, but I miss the speed of typing, particularly when my ideas are flowing like rapids over jagged rocks, desperate to get out.

I would also learn new skills. Mainly, I would want to learn to play an instrument. I love watching Evan play the guitar, and I think it would be wonderful to accompany him somehow, probably on the piano. The piano was special to my Grandma Rosemary, and I still remember her teaching me a few basic melodies.

I might miss my hands more than my legs. Hands are so quintessentially human. I am isolated from displaying affection when my fingers curl in on themselves like claws. I scramble to find new creative outlets and accept that some art forms are simply lost to me.

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The Blue Room

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When I was diagnosed, I choked on fear beyond any I had ever known. It easily surpassed even the terror I felt when I was raped and almost murdered. At least then there was a chance I could make it out alive. At the moment of diagnosis, blood rushed to my face, making my skin burn. My ears rang, both deafening me and heightening my senses so I could hear the doctor’s tears. A black cloud ate up the edges of my vision, and I thought, “This is death. It’s black and nothing and it’s coming for me now.” I had just enough time to notice the absence of Jesus in the hungry darkness when I saw my chiIdhood Christmas tree in perfect detail. I hoped dearly to see it again.

Imagine, all of that in a matter of seconds.

Then, I collapsed against Evan, and an umbrella came over us. I thought of nothing but him as we sobbed  together until we were nauseous. My mind spun on this loop: “I don’t want to leave Evan. He will be so sad to lose me. I can’t let this happen to us.” That train of thought possessed me. It still does. I can’t conceive of being separated from Evan. It shouldn’t be allowed. Doesn’t God know that I love Evan more than any human has ever loved another?

But a person can’t feel such an intensity of horror forever. That alone would be fatal.

This is how I live now. The darker feelings come in small chunks, so I am able to understand them as singular dead leaves moving along, unable to do me any real harm. I give them space in my river until they drift on, leaving the water clear. In the clean river, I am strong  enough to hope.

Still, sometimes when I lay in the dark waiting for sleep, I remember the blue cinderblock room where I heard the news, and I feel like I never truly left. It has become both my Hell and my home.

Fortune’s Fool

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When I was sixteen, a fortune teller at a fair predicted I would meet and fall in love with a man who would physically take care of me. At the time, I didn’t understand what she could possibly mean. Would I rely on my husband for money? I was hungry for independence and therefore a bit insulted, but most of all, I was bewildered. I needed more time with the fortune teller in her enchanting red silk tent, but she looked pointedly at her watch, then tapped the cash tray. My empty wallet made me unwelcome.

When I asked about the man I would marry at the beginning of our session, I did not imagine the ten minutes I paid for would pass so quickly and end so mysteriously. I wondered about her words for more than a decade, right up until my ALS diagnosis twelve years later. That day, I finally got the answer I sought. Doors slammed in my face. All around, clock needles spun backward. My end crept forward in every shadow.

Now, I rely on Evan to bathe, feed, and dress me, to keep me steady when I use my walker in the bathroom, even to wipe me after I use the toilet. He holds all the crumbling pieces of my body tight in his hands, as though trying to keep them safe until the miracle pill that can put me back together again finally arrives. My marriage looks nothing like it did when we were twenty-one or twenty-five, or even last year. Playtime is over, and we struggle daily to survive.

However, I realized as Evan delivered medication into my body via my brand new feeding tube, that what really matters remains unbroken. Even after all we’ve lost, he still loves me, and I will always love him. That knowledge is the bedrock of my existence, and it has yet to crack. Together, we chase happiness through a tangle of feed lines and IVs, not ready to surrender to how we live now. Side by side, with white knuckles and bloody nails, we crawl forward.

Benvolio: Romeo, away, be gone! Stand not amaz’d, the Prince will doom thee death if thou art taken. Hence be gone, away!

Romeo: O, I am fortune’s fool!

Romeo And Juliet Act 3, scene 1, 132–136