Category: Fear

On the Other Hand

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It can be hard to “live my truth.” Just because I have had a revelation or realization does not mean I can instantly incorporate it into my lifestyle.

Especially because my hope just got a kick in the teeth. The latest bump in my pump did not work. This means more time on oral baclofen, which, remember, is heavily sedating. Being sedated is different than being fatigued because I can’t fight it. Chemicals overtake my body and my will. They rush through me, making me heavy, blurring my thoughts. I take baclofen four times a day. It knocks me out for two hours. Being unconscious so much hurts my mental health, relationships, writing, and hope.

I say “being unconscious” because being sedated isn’t always the same as sleep. I sometimes wake up fully rested, ready for an hour of activity before it’s time to pass out again. However, sometimes I wake up feeling like I have only been out a second. It’s disorienting to say the least.

Everyone, from caregivers to family, is overjoyed when I am awake, and they all want to see me. I should be flattered and feel loved. Instead, I feel pressured. Imagine if, as soon as you wake up, whoever is near you is full of energy and ready to play. When I wake up, all I want is a few minutes to myself to check my email, catch up with Evan, maybe send a few texts – all the things you do to slowly come back to the world in the morning. Because it is perpetually morning for me. In an ideal world, whoever finds me awake would express their joy, then ask if I need a few minutes. I think that would help reduce the pressure I feel and make me ready to fight through my discomfort like I decided to in my last post in order to be present for the people who love me.

I’m beginning to fear I will always need the baclofen, that the pump will never work. I honestly don’t know how much longer I can handle this. Choosing hope is harder with each failed bump.

But I know I will go on because I have no other choice. I have up to three years before my lungs fail, and even if I live like this, the time I steal with Evan makes any amount of suffering worthwhile.

I Am Not OK

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

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

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

Like me.

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

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

Wish me luck. I need it.

 

Dr. Jeff, the Jugular, and Me

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

Whether or not your doctor practices emotional intelligence will make an enormous impact on the quality of your care and mental health. At best, a doctor lacking emotional intelligence can make you feel unheard, unimportant, or confused. At worst, you may end up feeling completely devalued or even traumatized.

Let’s travel back in time one week. Zoom in on me lying on the table in the OR. Right away, things started going wrong. I stayed on the table for a half hour while nurses darted around me like frightened birds, trying to find out where the surgeon was through every phone and pager in the room. One nurse even ran out into the hall to ask random people the question on everyone’s lips: “Where is Jeff?” I knew the instant he finally arrived because he owned that room. Even though my face was covered, I could feel him walk towards me, the nurses falling silent as he passed. He never paused his diatribe about paperwork and how he refuses to do another page today. He didn’t even stop when he put his hands on me. I remember thinking, he should see my face, speak my name, explain the procedure to me, anything to indicate that he knew he was touching a sentient being. That’s what an emotionally intelligent doctor would do. When he touched me, I felt like a piece of meat.

Next, the team couldn’t sedate me because of my low blood pressure. I was paralyzed when I heard this. That’s right, heard as in, overheard. No one said, “Your blood pressure is pretty low. Has this ever happened before?” No one said, “If we do this procedure right now, you won’t be able to have a sedative. How do you feel about proceeding?”

Taking care of a patient means approaching him or her with empathy. A cornerstone of emotional intelligence, empathy consists of admitting ignorance about a person’s inner life and taking steps to remedy that ignorance by asking questions and imagining a different perspective. However, Dr. Jeff was too busy ranting about his least favorite nurses and why they should get fired to address me, much less ask for my opinion.

The team gave me Lidocaine, which didn’t cut it – pun intended. Apparently, Dr. Jeff remembered he was operating on a person because he finally spoke to me: “You are going to feel just a little pressure here.” I braced myself. Then, a fire alarm went off in my brain, screeching, “Sharp! Sharp! Sharp!” as red strobe lights blinded me. I cried out when I felt the blade going in and out of my skin.

“You are going to feel pressure, there’s nothing wrong with that,” Dr. Jeff patronized. Did he forget I was not sedated?

The next thing I heard was, “Wow, she is bleeding all over the place.” This is not what you want to hear immediately after someone slices your jugular. It seems that one of my medications contains an anticoagulant. At that point, an emotionally intelligent doctor would have addressed me to manage my emotional experience of the surgery and reassure me. You probably know Dr. Jeff well enough by now to realize that this didn’t happen. In fact, after he closed the artery, he joked, “Now don’t go repeating anything you heard in here.” Naturally, I interpreted this comment to mean, “Hey, Right Shoulder and Side Neck, thanks for being such a good sport. Feel free to publish this experience as a non-example in your article on emotional intelligence in ALS News Today.” So here we are.

Apparently, a lot went right with the surgery. The results were exactly as hoped for. Still, imagine my surprise when I returned to my room to find my mother and husband smiling. They squeezed my hand, kissed my forehead, and told me how brave I was. “The surgeon stopped by and said that the procedure was a success!” my mom said.

It was then that I started to cry. The experience of being helpless to pain and violence dragged me back eleven years to the night I was nearly murdered. My PTSD symptoms flared to life; anxiety and depression crept in, first through nightmares, then into my waking life. I kept thinking about how different my mental state would be if Jeff had just spoken to me. I remembered how my would-be killer barely spoke to me, either. Why would he? I was meat to him, too.

How does the term “medical success” not take patient experience into account? Answer: when the success is being described by a doctor who shows zero emotional intelligence. No one deserves this treatment, especially not those made vulnerable by disease.

Save Medicaid from Being Slashed!

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The health care bill draft currently being reviewed by the Senate slashes Medicaid to the bone. If the bill is passed, 14 million of the most expensive beneficiaries – particularly, the elderly and disabled, including those suffering from ALS – will be kicked off Medicaid! Use the following text to write to or call your representatives and let them know that you expect them to oppose this health care bill (contact information here138). We must act quickly since senator Mitch McConnell intends to have the Senate vote by JUNE 30th!

The Honorable [NAME]
United States House of Representatives (or: United States Senate)
United States Capitol
Washington, DC

Dear Representative (or: Senator) [NAME]:

I am writing to ask for your help to ensure that people with Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s Disease have the coverage and health care they need and deserve. If passed, the Better Care Reconciliation Act will seriously impact the lives of people suffering from ALS and their families. In fact, it may even be a death sentence since many will be kicked off Medicaid.

The cost of living with ALS is staggering. Depending on the level of care a person needs, expenses can reach $250,000 per year. If patients are left with the burden of paying all the costs that Medicaid currently covers, these people will go without the feeding tube surgery and supplies that prevent them from starving to death. They will lack the medicine that relieves their tremendous pain. They will not be able to afford the caregivers who help them with toileting, medication, tube feedings, bathing, and monitoring vital machines such as ventilators. Most cruel of all, thousands will face the decision to go on a ventilator, or forgo the life-saving procedure in order to avoid bankrupting their families. In short, thousands of Americans with ALS will lose their dignity and their lives an agonizing death if they are deprived of Medicaid. (Optional: insert personal story of the impact of ALS on your life).

This is a matter of life and death, not politics. This health care bill is inhumane. I know there are a number of initiatives and programs under review. However, I think, and I hope you do as well, that Medicaid, which saves the lives of countless citizens, must be preserved and well-funded.

As a resident of (STATE), I hope that I can count on your support and look forward to watching closely as the health care bill moves through the legislative process.

(Optional) If you need more information on the impact of ALS on the people in our state, please don’t hesitate to contact the ALS Association of (STATE ORGANIZATION) at: (insert chapter website).

Sincerely,

Your Name

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.

Learning Helplessness

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Today while out on a (st)roll, I witnessed a toddler run out into the street in front of a car. I was unable to do what every molecule in me demanded: race to the boy and snatch him up out of harm’s way. I couldn’t even scream in horror or point and shout so a neighbor would notice and intervene. I could only watch.

Luckily, just as the child reached the middle of the road, the boy’s mother realized he had wandered off and saved him.

I thought by now I knew what it is to be helpless. When I fall, I can’t get up. I am not able to feed, bathe, or dress myself. I can’t even be left alone for more than one hour. I had no idea, though.

Now, I know.

Image credit – Marc Chagall’s “Un champ de ble apres-midi d’un ete”