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.

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Back to Basics: What I’m Grateful for This Thanksgiving

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This is not the Thanksgiving piece I intended to write, but this year I’m grateful and lucky simply to be alive. I’ve been hospitalized 3 times this fall. The first time I had double pneumonia. My lungs were a total white out when I was admitted. Lungs are supposed to be black on an x-ray, but mine were completely white and filled with fluid. No matter how much oxygen they gave me, I felt like I was suffocating.

The second time, one of my nurses saved my life because she noticed very quickly that my secretions – what I cough up – were getting too thick and had a blood tinge. I almost died during that hospital visit when my blood pressure dropped 80 points all the way down to 46, but I’m not ready to talk about that.

The third time I was hospitalized, Evan took my BP for morning vitals, and it was 72. He kept giving me midodrine to raise my BP, but it didn’t work. I was unconscious and Evan couldn’t wake me up for more than a second to answer questions like what my name was, so he called 911. I woke up in the ER. He explained why I was there. It is disturbing not to remember. I vaguely recall getting a CT scan, but it was like a dream.

I have a 10 cm wound from the rough treatment at the hospital. Evan and I are worried because I can’t feel anything at all on the wound, not even when Evan puts cream on it, and that is a sign of nerve damage. It’s getting wider and deeper every day. It’s a Stage 3 wound that is currently 3 cm deep.

I had planned to write Evan a letter of love and gratitude for my Thanksgiving post, but I’m exhausted so this will have to suffice:

Evan teaches me how to love every day. He has been taking care of me for 8 years without a break, and he is on call 24/7. There are no words to describe and thank him for the countless sacrifices he has made to ensure he gives me the best possible care. His love and devotion are almost beyond comprehension.

“Love is patient, love is kind…
It is not self-seeking,
It is not easily angered,
It keeps no record of wrongs…
Always protects, always trusts,
Always hopes, always preserves.
Love never fails.”

1 Corinthians 13:4-8

This is perhaps the most loved section of Paul’s letter to the Corinthians. Paul was writing about Evan. He just didn’t know it.

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My Battle Against Bitterness

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My application for the ALS drug Relyvrio was shot down by insurance a few days ago. There is no appeal process because patients who are on ventilators are not included in clinical trials. That means insurance can say it doesn’t benefit us. It was very hard to get that news. They say I’m in the end stages, but that’s not true. Even though my ALSFRS-R score is 1- the lowest possible score – I’m very much alive.

I’m starting to understand that I will never have access to any ALS drugs, that I won’t outlive my mom like I promised her, that I will die young and leave Evan a widower long before his time.

Right now I’m depressed, but my fear is that I will become bitter. I can’t let that happen, though. Then ALS would truly win because I wouldn’t be me anymore. So how do I combat bitterness? I keep hope that I will have enough good years left to make precious memories with my loved ones. I travel down memory lane frequently, enjoying and organizing old photos. I try to find joy in the little things like my dog Pickle’s happy dance, the Christmas lights in our bedroom year round, and the beautiful music Evan makes when he plays his guitar.

Not today ALS. Not today.

My FDA Advisory Committee NurOwn Statement

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Docket No. FDA-2023-N-2608 for Cellular, Tissue, and Gene Therapies Advisory Committee; Notice of Meeting; Establishment of a Public Docket; Request for Comments

Dear Drs. Califf and Marks,

I am a young woman living with ALS, and I am writing in strong support of the approval of the ALS treatment debamestrocel, which has proven to be both safe and effective in clinical trials.

ALS is a brutal enemy. This equal opportunity killer destroys the nerves that allow us to move, speak, eat, swallow, and eventually breathe. It is 100% fatal and has no cure. It can strike anyone at any time. When I was diagnosed with ALS at age 28 in 2015, I lost everything. My body, without warning or reason, turned on me, and that meant the end of so much. My career as a 5th grade English teacher and dreams of motherhood and growing old with my husband were all swept away like sand when I believed they were stone.

Let me paint you a picture of my life with ALS. My day starts with 40 minutes of breathing treatments to prevent infection in my lungs that leave me feeling like I’m suffocating. We stop when my oxygen drops to 92. I’m on a ventilator which is supposed to provide me with full, even breaths, but if the settings are even slightly off, it either doesn’t provide me with enough air or pushes too much too fast, forcing me to hyperventilate and pass out. I survive on a feeding tube and haven’t enjoyed real food in 7 years. We start my “food,” a beige nutrition solution that comes in cartons, after my breathing treatment. It’s delivered to me through a pump over the course of 20 hours, often leaving me nauseous.

Because I am on a ventilator, I can’t produce sound, not even a whimper when I’m in pain. I communicate with a device called a Tobii that uses eye gaze technology. I am actually typing this letter with my eyes. Why not write to you with my hands like a healthy person? I forgot to mention that because of ALS, I’m a quadriplegic, meaning I can only move my face. I miss being able to touch. I haven’t hugged my husband Evan in 6 years. I can’t even hold his hand. I’m totally paralyzed and totally dependent on others to meet my every need. Imagine you can’t scratch yourself when you’re itchy, can’t adjust the thermostat or even cover yourself when you’re cold, can’t clean yourself after using the toilet. That’s my life. ALS has stripped me of my independence. I’m utterly helpless without others, and I am nothing without my machines.

The ALSFRS-R is a tool to attempt to quantify how ALS is affecting a person. A 1 score increase could be the difference between choking and eating normally or requiring a walker and walking with a minor foot drop. The ALSFRS-R is imperfect at best. One person can have a score of 37 and be walking and breathing normally but have their hands, swallow, and voice impaired, while another person with a score of 37 could have significant shortness of breath and require a power wheelchair but have full function of their voice, swallow, and hands. It is not an accurate representation of every individual’s unique case or the changes that are occurring.

My 2015 score was 34, and my 2021 score was 1. Does a score of 1 accurately reflect me? I still communicate, live, love, smile. I have rich friendships and a healthy, passionate marriage. I’m a talented writer who raises awareness of the reality of ALS by blogging (howilivewithals.com). A score of 1 is completely unfair attempt to display ME.

Debamestrocel has achieved remarkable feats in clinical trials, including maintaining and even increasing ALSFRS-R points. Every point matters in preserving an individual’s independence and dignity. Debamestrocel also improved CSF biomarkers in ALS. No other drug has accomplished this. The benefit to those in the early phases of ALS is clear in P3 trials. Debamestrocel is a beacon of hope to members of the ALS community, and with rapid disease progression ending in death within an average of 2 – 5 years, we don’t have the luxury of time to wait for treatments.

Give me a chance to have more years on earth and make precious memories with my loved ones. Approve debamestrocel.

Sincerely,
Rachel Doboga

You’re Invited!

Consider this your invitation to write your own statement urging the FDA to approve NurOwn / debamestrocel! The deadline is September 20th, so get moving! The organization I AM ALS has created a wonderful guide to writing a powerful statement. Check it out! And remember, you MUST include the following:

Docket No. FDA-2023-N-2608 for Cellular, Tissue, and Gene Therapies Advisory Committee; Notice of Meeting; Establishment of a Public Docket; Request for Comments

On My Husband’s 37th Birthday

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“Nothing prepared me for the privilege of being yours.” – Sleeping at Last, “Turning Page”2

What you have to understand about the way I love Evan is that I am desperate for him. I can’t shut up about him, and I don’t want to. People say that the sign of a strong relationship is that it doesn’t appear on social media because the couple has nothing to prove. That makes me laugh because I am not writing about Evan for you. The truth is, I’m obsessed with my husband.

He is my laughter and smile and safety. He is the oxygen filling my lungs, yet he snatches my breath when I catch sight of him unexpectedly. When I fell in love with him, I felt like my real life had finally begun. I understood everything, who I was and what I could be with him beside me.

It feels like this: my heart beats him out, and he saturates every river of my blood until he marinates each cell. That’s not pretty language. It’s science, a completely accurate description of a biological phenomenon that I live every single day.

He is absolutely brilliant, an avid reader of Russian literature and history books that dwarf encyclopedias, relaxing by cruising biology journals. He also does hilarious impressions. I especially love when he puts on my glasses and becomes John Lennon. He is, in my correct opinion, the best caregiver in the world. I will always remember him telling me, “Stop saying you’re sorry. You don’t need to add qualifiers. I love you, and I’ll do whatever you want.”

My mom once said to Evan, nodding towards me in my hospital bed, “I know how this would have gone without you. She wouldn’t be alive.”

He looked at the floor and said, “I don’t want to think about that.”

Evan, you are why I fight. Happy birthday, darling.

On our honeymoon in Rome.

Can AI Voice Cloning Be Used For Good?

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Photo by Polina Kovaleva on Pexels.com

I’m pleased to present the link to the story for which I was recently interviewed, “Can AI Voice Cloning Be Used For Good?” by Kaleef Starks, Mark Armendariz-Gonzales, and Clera Rodrigues. The interview focused on the changes ALS has caused in my communication, as well as my experience with AI voice cloning and preservation. To read my full interview, click the book icon on the left. It’s under the heading, “Rachel’s Story.” Enjoy reading!

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!

The 4th of July – ALS Style!

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This is a photo I took on our cross-country road trip just before we crossed the Mississippi River.

Ever since we adopted dogs, I haven’t been a fan of fireworks. They terrified Malka, our dog who passed away on September 26th, which was surprising because she was a fierce protector. She used to huddle with our other dog, a chihuahua named Pickle, to hide from the fireworks. We’re not surprised Pickle is afraid, though. As Evan says, we raised a coward. Here’s a picture Malka and Pickle huddled together. By the way, our bird Jasper is a saint during fireworks.

Pickle always got to be the small spoon.

Now that you know how our pets celebrate, it’s time to hear my idea of how to celebrate the fourth, and to me independence means a cure! Let’s start with getting me off life support – goodbye ventilator! No more food pump for my feeding tube pushing food in my stomach 24 hours a day. I want to EAT!

I will start with enchiladas from Los Gorditos in downtown Portland next to Powell’s Books. Then Thai food and falafel in the huge city block of food trucks. I will finish with Indian and Ethiopian food before heading home where Evan will make all my favorite dishes. I will end the feast with a nap with Evan.

And since I’m cured, we might as well imagine my nerves have regenerated so I can cuddle with Evan during my nap. Our last hug was 7 years ago! I want to hike and climb. We once climbed a 50 foot cliff in Great Falls, Virginia. I was strong! I want to dig for fossils and row Carlos the red canoe at sunset, splashing Evan and singing all the while. I want to drive for hours and hours on a thousand road trips. We did four major road trips, but my favorite was our cross-country trip. We went the northern route to end in San Francisco, but I want to do the southern route, too. I want to see and do everything!

Happy fourth of July!

Here’s a picture of us in Carlos the red canoe setting out for a sunset paddle on the York River in southern Virginia.

Eight Years In…

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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!”