Up All Night

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I keep replaying last night in my head. A few hours after going to bed, I started feeling some muscle cramping and spasms. I tried to adjust my position to find comfort, but I could not roll to my side. This is becoming more and more common as the weight of a blanket becomes enough to pin me down. In the past, I have whispered Evan’s name and, half-asleep, he reaches out his hand, clasps mine, and pulls me to relief. I promised myself not to need him last night, though, since he has been up with me each night this past week as I fight a cough. He was clearly worn out.

“I can live with this, I can breathe through this,” I chanted silently.

Evan never complains about the ways my disease wears him down or holds him back. Ever. He is my absolute all, my strength and reason for fighting. He is the steady, calm man I have loved and trusted all of my adult life. Even in his sleep, he looks kind. He deserves sound, peaceful rest at the very, very least. So I lived with the spasms and breathed through them… for an hour. I tried to let his peace and my will be enough, but, like a lung clenching for air after being held underwater, I. Had. To. Move.

I woke him up three more times last night. We will experiment with my medicine tonight to relax my muscles. He will take extra care with my evening stretches. I will bargain with my disease to leave him alone. I will try to forgive myself

Someone to Watch Over Me

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Our dog Malka has always been a mama’s girl, but my illness has made her much more attentive. Lately, she can even preempt when and where I am about to roll, and if I hit the “help button” on my power chair, she sprints to my side. I was about to accept her new ESP powers and take her on the talk show circuit when I realized she has been learning the different tones my power chair makes when I press various commands. My wheelchair is training my dog! I am touched by her love and comforted to know that even as I lose my voice, she finds ways to connect with me.

The Kingdom of Childhood

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For some reason, this lovely spring weather makes me remember all the things I love about teaching: morning meeting and yoga, book club and literature circles, zumba and dance breaks every half hour to keep our energy flowing, writing workshops, and of course, just being with the kids. Listening when recess ended in tears, geeking out over Harry Potter, eating lunch together…

Maybe it’s rushing back to me because this is science fair season. I have so many memories of wearing my very best “thrilled and impressed” face for hours during the fair. Then there were the months beforehand when I was a test subject for at least five experiments in which I learned I am not colorblind and I do like chocolate chip cookies.

I miss it all. How lucky I was to spend my days this way before ALS stole it all away.

Reality Check

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“Honey, whether or not you accept help doesn’t change the fact that you need it.”

 

I received this great advice from a nurse as I struggled to accept all the new braces I need to keep my feet flat enough to bear weight. As I try to maintain my independence, I know her words will be helpful to me.

A Brave New World

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On June 10, 2015, I shared this message with my loved ones…

“Dear family and friends: I am so sorry to have to tell to you that today I was diagnosed with ALS. I am sad and scared, but also hopeful that I will live longer than the average ALS patient because mine is a disease mostly of the upper rather than lower motor neurons. This may mean my lungs will stay functional longer than the average 5 years. No matter how many years I have left, though, I know they will be beautiful because I am so well-loved by my husband Evan and all of you. Please keep me in your wishes, prayers, loving thoughts and light, and know that I am grateful to know you.”

Then my husband and I were swept away into the dizzying rapids of ALS care…

Every three months, I will be attending a multidisciplinary ALS clinic so the progress of my disease can be assessed and I can learn new skills to keep me living comfortably. After a six hour first clinic visit in which I met with my doctor, social worker, occupational therapist, and physical therapist, I am happy to say my breathing and muscle tone are strong and my speech is in a range indicative of slower decline. At my next clinic in September, all of this will be assessed again. We are hoping for a very small amount of change, as this would mean I have slow (rather than average) progression.

“I’m fine,” I insisted, trying to be pleasant even though I was beyond overwhelmed.

Deb shook her head. “Don’t settle. If you are having trouble buttoning jeans or using a fork, tell me. We will figure it out and keep you independent as long as possible.”

Deb, my Occupational Therapist, was the 6th specialist I saw at Clinic the day everything changed. I was exhausted by endless assessments and frightened as I tried to make sense of all the information coming my way. Deb is not one for excuses, though, and I needed her pushing as badly as I needed the follow-up appointments with her where we plowed through a list of tasks that frustrated me and devised alternate ways to complete them. Deb changed my whole perspective on Clinic.

It is, as my neurologist Dr. Goslin says, a place to rewrite the story, even if we can’t change the ending.

We still check my progression, but this disease and the treatment for it no longer simply happen to me.  What I want matters. My goals matter. Deb taught me never to miss a chance to address my concerns and needs so that I can live as well and as long as possible. These hours in clinic, these people who support and hear me, keep me doing what I love. I believe that they may even save my life, keeping me strong until a medication comes out to stop this nightmare.

I have hope, and it is stronger than fear.

My blog’s name is in tribute to Meg Rosoff’s novel, How I Live Now, the ultimate tale of resilience and determination. Just as the main character Daisy learns the true nature of loss (“If you haven’t been in a war and are wondering how long it takes to get used to losing everything you think you need or love, I can tell you the answer is no time at all”), but never gives up, claiming, “Fighting back is what I’ve discovered I do best.”

I plan to use this blog to chronicle my own battle and connect with other ALS warriors. Click How to Help to find ways to join the fight to defeat ALS and care for pALS.

Endless gratitude and love to my husband Evan, who held me when I was diagnosed with a terminal illness, rocked me when I cried myself to sleep for months after, and holds my hand at every single clinic. You are the reason I fight.