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)!

“Extraordinary” Collaboration Brings Together Project MinE, Answer ALS and the New York Genome Center

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Here’s something to smile about! A big thank you to #TheALSAssociation for facilitating and helping fund this collaboration and countless other invaluable partnerships. In the shadow of Trump’s attempt to defund the National ALS Registry, witnessing The ALS Association’s commitment to streamlining research efforts to push us ever closer to a cure is truly heartening!

PS I know you are wondering how The ALS Association is able to fund so much research. It is possible because of the Ice Bucket Challenge, which is coming up in August. Get ready to get wet!

The Official Blog of The ALS Association

The ALS Association is proud to announce three large research organizations — Project MinE USA, Answer ALS and the New York Genome Center (NYGC) — will be working collaboratively toward their mission for treatments and a cure for ALS. These global collaborative projects, supported by The ALS Association through ALS Ice Bucket Challenge donations, will share genome sequencing information and research expertise to move efforts forward more rapidly and efficiently. Read more to learn about how global partnerships advance ALS research.

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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.

Summer Dreams

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Something about spending time on a covered porch always leads me reminiscing and daydreaming. As the rain clears to make room for the summer sun, I spend hours out there, watching my dogs play and letting my mind float on the afternoon breeze, I remember, and I plan.

This beautiful weather makes me miss canoeing with Evan terribly. The sound of the water as our paddles slid through the gentle waves slowed my thoughts so I could exist in that moment, working in perfect synchronization with Evan. I especially loved our sunset excursions when the world we knew drifted off to sleep and another secret world began to stir, a nocturnal kingdom we could only glimpse before we lost the light and our way.

When I am cured, Evan and I will return right away to the water. We will buy a red canoe and name it Carlos, and he will take us on dozens of new adventures.

The other activity I am missing is something I only did once. I was shy and nervous, so I didn’t get up the nerve to try karaoke until rather late in the game. When I finally sang into that microphone, though, I was hooked. I especially loved singing duets with Evan (he makes everything at least ten times more fun). When I have my voice back, I am going to hit every karaoke bar in town!

Rag Doll

 

At the recommendation of ALS Worldwide 129147 and with the approval of my beloved neurologist, I have begun an unconventional course of medications. I use the word “unconventional” because some of the medicine is either not typically used in cases of ALS or is being used outside of the FDA approved dosing. Additionally, none of this is covered by insurance. Our hope is that the new protocol will better manage my symptoms and even gain back some of the strength and mobility I have lost.

I began taking quinine sulfate to manage my excruciating muscle cramps. Even though my mouth now constantly tastes of bitter tonic water, it’s worth it because I am getting near total relief.

I am taking Nuedexta three times a day rather than the standard two in order to better control my PseudoBulbar Affect, which causes involuntary fits of laughing and crying. We are seeing good results so far.

Next week, I begin daily injections of B12 into my arms and legs. I am not absorbing the B12 I ingest orally thanks to ALS messing with my blood-brain barrier, so we will be delivering it directly to my muscles. This should restore some of my strength and mobility.

And so it goes. We experiment to manage the untreatable, to keep me going by patching up the tears until I am more rag doll than woman. Still, as long as I am, I will be grateful.