Category: Change

The Empty Chair

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Dedicated to the grieving families of Seth Poling and Sandra W. Marlowe. May peace be with you.

Does anyone ever sit in the place the missing loved ones had at the table? No. It will never just be a chair again. I had a place, you had a place, but that chair that was your favorite is now free for anyone to sit in. There is no chance I will see you sit in it again. No more memories will be made. I have to try to close the hole. I should at the very least take back this spot, sit once in your chair. Otherwise I will always be staring at a gap in space. But I can’t. It will always belong to you. So will I.

Photo by Paula Schmidt on Pexels.com

My California Kitchen

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Photo by Ella Olsson on Pexels.com

This piece is about the last summer I could eat before losing the ability to chew and going on a feeding tube.

Summer in Amber

We held that whole summer
In our strawberry sticky hands,
Trapped it in our tiny kitchen
Where sunbeams tangled with our legs
Around too much furniture,
Each piece an island
Of earth-born treasure:
Paper cartons of berries on the unfinished wood cart,
Artichokes and avocados, mangoes, tomatoes, and ginger roots
On the battle – scarred table.
Sometimes a lone carrot
Hid from our merciless knives.
We hid from the diagnosis that confirmed,
Even scheduled, my end.
During those hours, our fears dulled to hum as
We took turns navigating
The narrow channels of the archipelago,
My hips and your feet too wide to sail in tandem.
We worked on recipes and honesty,
Rushing to use all the food before it spoiled
Sharing fragile secrets before they
Rotted us.
September stole those golden months away,
Leaving us gripping memories of
Overflowing brown paper bags from the local farm,
And hanging baskets by the window
For pounds of onions, beets and sweet potatoes.
They’d spent long enough underground
Dreaming of the sun.
Best of all, I imagined
The round prints of your toes
On the flour-coated floor:
Our very own happy paths.

Every Breath You Take

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“Every breath you take just proves how blessed you really are.” – John Landry

“This is Rachel Doboga’s ventilator just after starting the nebulizer, and her oxygen is dropping to 95, now 93,” Evan says, holding his phone up to film my ventilator readings.

He stops filming and turns off the nebulizer.

“My head is on fire!” I say.

“I’m sure,” Evan replies. “Your oxygen just dropped to 89. How are you feeling? Are you catching your breath?”

I blink, my signal for “yes” and “good.”

“Hopefully this video will help the pulmonologist,” he says, putting the phone down.

I am having daily migraines because of the nebulizer, a machine that pumps medicine into my lungs. Tuesday morning I just couldn’t handle the feeling of suffocating. I felt like I was dying and at the same time I wanted someone to end the suffering and kill me. Fortunately, Evan and my nurse figured out that this was not just anxiety, that something really was wrong and I wasn’t getting enough air. Times like these make me think of Lou Gehrig and all those who came before me. How horribly they must have suffered being deprived of oxygen.

I’m in a classic Catch 22 situation. I need the medications the nebulizer delivers to my lungs to breathe, but the nebulizer literally takes my breath away. Evan made an adjustment on the machine that helped, but I still get short of breath and have migraines. Today we had to stop because my oxygen dropped to 92. Now we have to solve the mystery of why this is happening. We have tried every possible combination of 2 different nebulizers with 2 different ventilators, and no matter what machines we use, my oxygen drops.

In the meantime, I have to ration my imitrex, a drug that helps with migraine pain, because I only get 12 pills a month. Originally it was 9, but my provider at the ALS clinic fought insurance to get me more. She’s an amazing advocate.

Lots happening. My ventilator was dying so I got a new one and a backup. However, the settings were wrong so the machine forced me to hyperventilate and I passed out. While I was out, Evan had a video conference with my pulmonologist. Now we’re slowly adjusting the ventilator to get me to a healthy place. We have 3 days left of titration. My husband is amazing. He’s managing the process.

I do have some good news. My provider and I discussed the amount of meds I’ve been stacking to get through trach changes – the number is 5 – and decided it would be best if I could just have 2 medications – a painkiller and something for anxiety. She wrote me a prescription for a painkiller, but I asked her to give me just 4 pills. That will last me the rest of the year for trach changes. I told her I don’t feel comfortable having more than that in the house.

I have great support, but I could really use all the prayers, crossed fingers, and good vibes I can get!

Eight Years In…

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Photo by Hakan Erenler on Pexels.com

Eight years ago on June 8th, I was diagnosed with ALS. At diagnosis, I was given 2 – 5 years to live. We all are. I was just 28 years old.

After my diagnosis, I immediately said goodbye because that’s what I was told to do. I was told there is no cure for the monster that had taken over my body, my life. I posted something on Facebook to the effect of, “I’ve just been diagnosed with ALS. Thank you all for being a part of my life.” I didn’t know there were other options, that even without a cure I could fight.

My fantastic ALS clinic connected me with the local chapter of the ALS Association and suddenly I had a power wheelchair, a Tobii eye gaze computer, and a cough assist machine, and I was trained to use it all. I had many long conversations with my neurologist, pulmonologist, social workers, husband, and family, and decided to go on a ventilator when the time came. I’m now a bedbound quadriplegic on life support and survive on a feeding tube. I’m very lucky because I live at home despite my high needs. My husband Evan works tirelessly, seeing to my every need. He is the reason I fight. I would do anything to stay by his side.

When I was diagnosed, we were about to start a family. I can’t have kids so we were researching adoption agencies. We decided to adopt siblings because they are hard to place. I even made a Pinterest board with resources for adoption and raising creative, resilient, grateful, vegetarian children. I also had a list of 27 parenting books we were planning to read together. We were going to be READY, but you know what they say about the best laid plans…

Eight years in, I’m starting to forget what it was like to speak and move. I guess it’s for the best since I will never talk or walk again. I remember certain things, though, like playing Who’s the Judge with my family at the kitchen table after dinner. We would sit in a circle and when it was your turn, you said a silly phrase in an even sillier accent. Everyone else had their eyes closed and would try to guess who the speaker was. Looking back, it was a ridiculous game. It was only my parents, sister, and me so it was easy to tell who had spoken by location alone. Plus, we always took turns in the same order. We all had fun, though.

I remember the first time I spoke Russian in Russia and someone understood me. It was like the best magic trick ever. My first words were to the taxi driver bringing me from the airport to my new home for the summer.

“I’m afraid,” I told him.

“Why?” he asked.

I explained I was worried the door to the apartment wouldn’t open. He promised to stay until I got inside. The magic trick worked.

I remember dancing with Evan with my Walker between us in the living room, his strong hands firm on my hips keeping me safe as we swayed softly, softly to Frank Sinatra. No more swing dancing for us. In our first Ice Bucket Challenge, Evan said, “I’m doing this so I can dance with my wife again!”

I remember dancing with dad on his feet in a living room across the country 30 years ago, usually to something loud like Eric Clapton. “Layla” was my favorite because every time it came to the part where Eric Clapton sings, “You got me on my knees Layla!” dad would set me down and fall on his knees in front of me.

These losses don’t hurt anymore unless I focus on precise moments I’m able to fish out of the murky depths of my memory. I have learned better than to do that. They only ache now.

I miss my old self, the creative, playful teacher, the fossil hunter, the singer, the traveler. I’m reminded of the lyrics to “Summertime Sadness” by Lana del Rey: “Think I’ll miss you forever like the stars miss the sun in the morning sky… Even if you’re gone I’m gonna drive!”

Spring Born

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Warmth tempts my berry tipped toes

to the opening of my den.

I crouch by new grass blades

sharp with the bitter scent of promise.

 

I am spring born.

 

What was my life before this long darkness?

Before this crescent edge of sun?

Do the trees stand exactly as they used to,

cutting out room for my shadow

in their own greater  shade?

Does the river carve out the spots where I used to stand

in hopes that my feet will

nestle in its water again?

 

I take one step forward

into the–

 

I am spring born.

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.

https://www.youtube.com/watch?v=IeS-Wr4iz

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.

Demon in My View

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“I have not been

as others were –

I have not seen

as others saw…

When the rest of Heaven was blue

of a demon in my view.”

Edgar Allan Poe, “Alone”

I’m so sick of ALS. It is hitting me once again that this is my life, and even when I’m tired or sad, I won’t get a break. ALS will not stop until it kills me or a cure is found. The clock is ticking, and my murderer is stepping on my shadow.