The Sun’ll Come Out April 19th

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I haven’t written a lot about the problem that has rendered me bedbound for quite a few months now. You may think you understand the severity of the situation. However, what you know is the tip of an iceberg that you soon discover is actually the edge of a glacier that is moving inevitably into the sea to raise and heat the ocean around you. In other words, you don’t know the full story. Yet.

The first two minutes of this video offer an explanation of what has been happening to my body.

The spasms affected me first in predictable ways, like decreasing my mobility and flexibility. Then my caregivers began to struggle to dress because of the extreme rigidity of my joints. Bye bye to my fitted retro clothes. Hello baggy sweaters. Maybe this doesn’t sound like a real loss, but when you have ALS, or even just live in a wheelchair, there’s already so little you can control about the way you present yourself to the world and the impression you make. A teal camisole under a blue tunic topped with a gold 1960s cardigan was my way of telling new people, “I may look kinda funny, and yeah, I need a computer to talk, but I’m happy and playful!” Those clothes made me feel like my old self. Losing the clothes was a stinging paper cut type of hurt: sharp, yet invisible.

Soon, the effects of my spasms took unexpected, dangerous turns:

– I spasmed in my shower chair and nearly fell. I would certainly have broken a bone since my limbs were locked.

– My jaw clenched so hard that I can’t brush my teeth anymore. This put me at risk for more than cavities. Dental hygiene is a first line of defense against pneumonia, which is all too often fatal for people with ALS.

– I became bedbound because moving me became too risky with how violently I shake. As a result, I am vulnerable to circulation problems, bed sores, and serious mental health issues.

I am now officially on every antispasmodic and pain medication my mind can handle. I had another one, but it causes nightmares so violent about the pets, I am haunted by them. I can’t even tell Evan, that’s how bad they were. Still, despite all the medicines, my spasms are so bad that I even sense them in my dreams and wonder why my dream body is shaking. Other people in my dreams avoid me because they are afraid or judgmental. The new medicine disturbs me. I wake up suddenly because, for example, I hear a crow and see it rushing at me out of the dark with the face of a human. I also have a black owl with raven feathers who guides me through the dark forest that is now my dreamscape. (clearly, I’ve been reading too much Rosamund Hodge). I wake up in pain, exhausted, and breathless.

I wasn’t supposed to get to this point. My doctor recommended that I have a Baclofen Pump implantation eight months ago, which my insurance denied immediately. So began an epic struggle with my insurance on one side and my doctor, the amazing team of nurses at the clinic, and my mom fighting valiantly on my behalf. Guess who finally won? Are you guessing the good guys? I can’t see you. You should be guessing the good guys.

BUT BEFORE THE SURGERY… I needed to do a successful Baclofen Pump trial.

The trial will look like this. No needles are actually shown in the video, only syringes, the tubes that hold medicine at the top of a needle. There is no blood. You can safely watch this while eating lasagna and your weak little tummy won’t so much as turn.

The trial was four hours of pain, but I got through it. Evan was with me, and Evan makes all suffering 50 – 75% better according to the latest study in the Harvard Medical Review (2017 Nov. Volume 4). The pain wasn’t caused by the needle in my spine – been there, done that – but by the fact that I can’t have any baclofen – my main antispasmodic – before the procedure, and it took four hours for the baclofen pumped into my spine to take effect. That meant four hours of spasms so intense that my whole body shakes and cramps, my jaw rattles, my teeth start chattering so wildly that I actually chew skin off my lips, and I beg Evan to cut off my limbs (usually starting with my right arm).

It was worth it, though, because it worked. The trial worked.

I forgot how luxurious it is to feel comfortable in my own skin, and after April 19th, the date of the surgery, I will feel that way all the time. the other side of the surgery…

I imagine that’s where sunshine lives, the daylight outside my bedroom window that I so long for. It’s where holding hands with Evan on the back porch watching the dogs play has been waiting for me, and so too the quiet scent of the poetry paperbacks in the last aisle of the Blue Room at Powell’s City of Books.

On the other side of the surgery is everything I love and live for, and I am overjoyed that I will have it again.

I will keep you posted on the events around the surgery. For now, start around minute two where the pump first shows and stop before the explanation of side effects to gain a better understanding of how the implant works.

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.

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

 

 

 

 

 

The Power of the Bucket List

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The approval of Radicava, the first medicine for ALS in 22 years, had me reconsidering my post that labels my belief that I will survive this disease “wild.” Then, the vessel of  my most precious dream was wrecked on jagged rocks I never saw coming.

The federal budget for 2018 calls for the complete defunding of the National ALS Registry, and the shock of learning that my own government would so callously undercut one of the most important parts of the search for a cure left me – and I imagine many others – frightened and enraged. The budget also cut funding to Medicaid and SSDI (social security disability insurance), a fact that barely sunk in. I just didn’t know how to process the realization that the registry was in danger, and Medicaid was as well. Medicaid covers machines, medication, feeding tube supplies, caregiver fees, and so much more that we could never be able to afford on our own. On top of that, if we lost the $600 per month we receive through SSDI, how would we afford the expenses Medicaid doesn’t cover, like my daily injections of B12?

I chose to focus on saving the National ALS Registry155 a campaign I am continuing to expand. Narrowing my focus and taking action gave me a chance to salvage some of my former optimism.

Then came the second hit: a health care bill drafted in the dark that slashed Medicaid so deeply that 14 million of the most expensive beneficiaries – including the ALS community – would lose coverage and very likely their lives. My joy over Radicava seemed distant, even foolish. What good is this new treatment if we can’t afford it because our insurance has been gutted or taken away? Obstacles were coming from all sides. Rising tides of depression and fear threatened to drown me. They still do.

I had to find a path back to joy and hope in the midst of the battles I had been forced to join. Enter my inspiring friend Glynis, who made a bucket list with her husband Vince after he was diagnosed with ALS. The list helped them focus on enjoying the present, no matter how hard it got, and gave them things to look forward to. I decided to follow her example, and I came up with a list that includes both things I can accomplish despite my disease and other dreams I look forward to achieving after I am cured. Now, I have something new to think about as I try to fall asleep and worry creeps in. Have a peek at the list. What would you add to your own?

Help Launch Phase 2 of the “Save the National ALS Registry Campaign”!

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WANTED! I am looking for people with experience canvassing for petition signatures. Phase 2 of my “Save the National ALS Registry Campaign” is to create and publish a guide that allows citizens to reach out to their neighbors and get signatures to send to representatives along with a letter explaining why we need them to oppose trump’s budget as long as it includes completely defunding the National ALS Registry.

Even if you don’t have experience, message me if you are willing to help do some research on how to support and mobilize advocates who are ready to pound the pavement!

Remember, this is NOT a partisan issue. You can love Trump and still advocate for the ALS community! #ALSaware #DefeatALS #NationalALSRegistry

Pacing Myself

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I have always struggled to acknowledge and accept my limitations to the point that I often push myself far past them. From middle school through college, I participated in at least three extracurricular activities each year. OK, that’s a lie. It was more like four or five. I was in a leadership position as often as possible, too. Of course, that all came on top of a driving need to get straight A’s (and yes, I know that is a misplaced apostrophe, but I stand by it as a legitimate way to make a letter grade plural).

Latin

In high school, I was president of Latin Club. In this photo my dad and I are on a Latin Club field trip.

My first year teaching, I started the middle school book club, served on the information technology curriculum committee, proposed and planned an interdisciplinary curriculum fellowship and a fellowship to rework the English curriculum to include multicultural literature.

I love being busy, operating at full speed, running out of room in my planner, making multiple to-do lists and slashing through each item before falling into bed exhausted.

Now, though, at least half the days of the week, just functioning leaves me too tired to do anything productive. ALS puts such a strain on the body that simply existing is like running a marathon every day. Three years into this nightmare, I’m finally coming to terms with the fact that I can’t set the same amount of goals for myself as I used to. Doing that sets me up for depression, frustration, and failure. If I want to preserve my mental health and use my time well, I have to learn to prioritize and decide where to scale back. I’ve got to stop spreading myself too thin. Thus, without further ado, my freshly pruned list of goals:

1. Enact Phase 2 of my “Save the Registry” campaign (you didn’t really think I would stop at an article and blog post, did you?)

2. Fundraise for The Walk to Defeat ALS

3. Write one essay or section per week for my book on living with ALS

What I expect to sacrifice to accomplish all of this is the frequency of my blog posts and social media updates. Rather than posting every few days, I think it will only be manageable to post once every 1.5 weeks. I consider this a loss since connecting with readers is such a source of joy for me. However, I am hopeful that after I torpedo Trump’s attempt to defund the National ALS Registry and complete my fundraising efforts at the end of September, I will be able to write for my blog weekly. Getting my muscle spasms under control would also be a big help since I wouldn’t spend half the week sedated by Baclofen and Vicodin. The plan right now is to increase the amount quinine sulfate I take and undergo a test to see if installing a pump to push Baclofen directly into my spinal fluid would eliminate the spasms. The pump should increase the effectiveness of the Baclofen while diminishing the sedating side effects. I will definitely keep you posted on that.

For now, I will conclude by thanking you for your support of my writing, my health, and my dream of a world without ALS. I’ll write again soon(ish)!

A Wild and Lonely Belief

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9Dedicated to Dr. Goslin for giving me permission to believe, and my husband Evan, who shields me from the worst of the winter winds.


I am a voracious reader. I always have been, thanks to my parents and grandparents, who planted books around my house in places I could reach even when I was still crawling. They were treasures I was allowed to discover on my own, and as a result, they felt special and personal to me. The books I read in my childhood became a part of me in that they showed me how to dream, hope, and believe. Even now, those stories influence the way I understand the world and cope with the rocks and daggers it throws at me. When I spot trouble coming my way, I snatch up one of these books, opening it wide to use the front and back covers as a shield while I confer in hushed, hurried tones with the characters inside.

Lately the shield I crouch behind is the work of one J. M. Barrie, and Peter Pan is whispering in my ear: “Every time a child says, ‘I don’t believe in fairies,’ a fairy somewhere falls down dead… Do you believe in fairies? If you do, clap your hands! Don’t let Tinker Bell die!” I watch the children bring Tinker Bell back by clapping and shouting, “I believe!” But what good can Peter Pan’s words do me, a young woman dying of ALS? More than you might ever imagine.

You see, I have this conviction that I will not succumb to my disease. I believe I will survive this. I can count on one hand the people who share my belief. I often hear other pALS (people with ALS) talk about their sadness over the special moments they will miss after the monster we are all battling cuts their lives short. On the earth beneath which we have been laid to rest, our loved ones will blow out birthday candles, throw graduation caps into the air, walk down the aisle, paint nurseries, and build cribs. We can only hope they think of us now and then as the flowers of their lives continue to unfold long after our own blooms have wilted and shriveled.

That’s not my story, though. My blossom is wilting because winter has come, not because I am dying. Bitter winds may batter my petals, but my roots are safe and strong. They remember spring and are waiting for it to come again. I have been told not to get my hopes up, and my answer is always the same: “What harm can believing do? If I am wrong, I won’t be around to cry about it.” The fact of the matter – which I rarely endeavor to explain anymore – is that believing is a source of strength for me. After all, Peter Pan said belief can save a life. If you need to hear about the power of belief from someone with more authority, consult another prominent book from my childhood. Open the Bible to Matthew 17:20 where you will find the following words: “If you have faith as small as a mustard seed, you can say to this mountain, ‘Move from here to there,’ and it will move. Nothing will be impossible for you.”

To me, belief is so powerful because of what it inspires. The magic of belief lies in the way it empowers us to live, and when necessary, fight. I believe that I will be cured, but that doesn’t mean I expect an easy path. I know that only if I work hard and plan carefully, I will survive long enough to be cured. This conviction shapes how I live now. In order to last until the cure, I need to keep my lungs strong and clear with daily use of the cough assist and AVAPS machines. Each day, I also complete two dozen physical therapy exercises and follow my feeding tube meal program. I can bear all this and more – hours spent in the hospital for clinics and drug trials, daily vitamin injections, even a tracheotomy if my lungs fail – because I know that my story will have a happy ending.

This is my wild lonely belief: that I am not a withering rose, but a winter one, waiting with patient certainty for the sun.