Tag: Joy

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.

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.

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.

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.

Rejoice, for Yesterday a Miracle Happened!

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Photo by Pixabay on Pexels.com

When I read the news, I immediately started sobbing. We were about to start trach care and Evan was holding all the materials, but as soon as he saw the first tear fall, he put it all down.

“What happened? What’s going on, honey?”

I could hear the mounting panic in his voice, but I was crying too hard to type my answer – that these were tears of joy because the FDA had made the right decision and approved Tofersen, a miracle drug for people with SOD1 ALS and familial ALS. Thank God, Goddess, and Jesus Christ I don’t have either of those. I’m very, very lucky. Still I am overjoyed! I know one family who lost 33 people to ALS. They cut through generations and you’re almost guaranteed to get it.

Evan wiped my tears so I could type. “I’m so happy! Tofersen just got accelerated approval from the FDA. It’s almost like a cure for familial ALS! Everyone has been been campaigning so hard for this on Twitter. It’s a dream come true!”

I feel bad for not including him in my passion over the past few weeks, but we have been consumed by our efforts to put together a fundraiser for our dog Pickle who desperately needs veterinary care.

I go on and on. “One man was on life support and now he’s ice skating with his daughter! And another woman’s ALS clinic score hasn’t changed in 2.5 years! Mine went down every 3 months until they stopped measuring. She cooks, does laundry, does everything she shouldn’t be able to do!”

Evan raises his eyebrows, speechless.

“The FDA approving Tofersen is a huge deal for the whole ALS community because it’s the FDA recognizing a biomarker for ALS. Who knows where that could lead?! This is the 3rd ALS treatment to be approved in 6 years. Things are really ramping up! I’m not eligible for any of them because I have sporadic ALS and I’m on a ventilator, but I’m still absolutely thrilled for the rest of my community!

“I’m proud of you, honey. You contributed to this.”

“Barely. Just a few tweets and reading a lot.”

“That’s still something. I love you.”

I’m suddenly very tired. All the crying and the roller-coaster of emotion wore me out. I have a feeling this is just the first wave of joy and tears today. Evan closes the curtains and peaceful sleep takes over my Tofersen dream come true.

I don’t want to marry Edgar Allan Poe!

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By Rachel Doboga

Photo by Tyler Quiring on Unsplash

Alright, here’s the scoop. In early March, we knew one bacteria had colonized my lungs, meaning it will never go away. We just have to manage it with hour-long nebulizer / breathing treatment sessions in the morning and evening, and I have to do regular tests. We also knew that a second bacteria was present.

The secondary infection worked very fast and by the morning of Monday, March 6th, I was coughing up blood. My first thought was, “I don’t want to marry Edgar Allan Poe!” His wife died of tuberculosis, and so did his mother. Talk about trauma! Did I mention I was an English teacher before ALS? I digress.

I got my bactrim fast and my awesome primary provider at the ALS clinic fought insurance to get my tobramycin. Slowly, blood clots replaced the fresh blood. I don’t understand why, but at the height of my illness I experienced paranoia and severe nightmares. I even hallucinated there was a tarantula on my stomach, but just as I was about to hit my alarm, it jumped down and skittered away. Evan very patiently explained again and again that the Pacific Northwest doesn’t have tarantulas, but I still am not sure… At any rate, my mind eventually cleared, though I am still recovering.

My pulmonologist is doing an in-home chest x-ray since I am bedbound (very cool!), a blood test, and I already had a sputum test. Sputum is the gunk I cough up, gunk being the scientific term. I was on bactrim and tobramycin for two weeks, and now I take tobramycin every other month preventatively to manage the bacteria that have colonized my lungs. Unfortunately, the second bacteria colonized my lungs as well, but I’m trying to stay positive and remember I’m in good hands!

And you won’t believe this, but those good hands at Pulmonary Critical Care just told me my sputum test came back completely clean – no colonization whatsoever! We’re still doing the nebulizer treatments and the tobramycin, as well as the chest x-ray just to be safe, but I don’t mind. I’m just ecstatic the bacteria are gone for the first time since October! Rejoice with me!

  • I can’t post comments or reply to them, but I can read them and I love them. Keep writing!

If you have fond memories of Rachel as a teacher in her life before ALS, or if a post on this blog has ever moved you, please consider making a contribution to Rachel’s out of pocket caregiving fees, medical expenses not covered by insurance, and transportation costs through Friends of Rachel. From your PayPal account you can donate to FriendsofRachelDoboga@gmail.com

The man I kiss at midnight

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What you have to understand about the way I love Evan is this: I am desperate for him. I can’t shut up about him, and I don’t want to. I have heard people say that the sign of a strong relationship is that there is no sign of it on social media because the couple has nothing to prove. That makes me laugh because I am not writing about Evan for you, or at least not to convince you we’re happy. I’m just evangelical about my husband.

He is my laughter and smile and safety. The world could fall away, but if we were together, I would be just fine. I don’t have reason to be afraid anymore, and when my memories scare me, he holds me while I fight a villain only I can see.

He is the air filling my lungs, and 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. He turns my blood into champagne. That’s not pretty language. It’s science, a completely accurate description of a  phenomenon that I think about and live every single day.

I don’t care if he loves me as much as I love him. I am just glad he wants to be with me. More than anything, I want him to be happy. Because of that desire – for him to have the best of every single thing under the sun and exist in total bliss – we had this conversation:

Rachel – I read about a woman who remarried barely two years after her husband died. I guess she missed having a spouse she could be normal with because she hadn’t had that the whole time her husband was sick. I want you to have a normal, full life. I am like a physical nonentity. You deserve better.

Evan – You’re not a nonentity! How can you say that?

Rachel – Physically, though, I just take up space. I can’t even hug you. How can this be enough for you?

Evan – It’s enough. It just is. The way you look at me makes me feel hugged.

Rachel – That’s one of the best things you’ve ever said.

His happiness is my greatest life goal. As for me, I’m happy to just stare at him while he reads, cooks, or sleeps. I know I look sweet, but don’t let that fool you; he makes me feral and vicious. I would do absolutely anything to secure his happiness without hesitation. I can forgive a lot, use my empathy to understand where someone else is coming from in a conflict, move on. All of that goes out the window, though, when someone wrongs Evan. I never forget either. May 2012, Washington DC, Evan organized a massive event to train grassroots activists, which was attended by 523 citizens from around the country. Evan was troubleshooting a problem in the lobby when his colleague swooped in and began bragging about the 523 advocate training binders that Evan had actually created. He has been over it for years. I am not. So, yes, you could say I am more than a little protective of him.

His existence makes me believe in a higher power because there is no way that he – or we – are products of chance. He wraps around the chunks cut out of me by a painful past and lingering insecurities. I honed sharp edges to protect myself before him, and I enjoyed the power of a preemptive strike. However, time with him has dulled those parts of me, which I allow because in my new life, I don’t need razors.

Falling in love with Evan also restored my lost faith because I have to believe that someone is watching over him every second we’re apart. Otherwise, I would go mad, though losing my mind over my love of Evan isn’t completely out of the question…

I never want to live in a world where he is farther than a phone call away. Ideally, that sentence would read “I never want to live in a world where he is farther than 20 feet away,” but I am aware that we need our own identities. This is probably the best indicator that I am not completely unhinged regarding Evan. I am in love, infatuated, even a little obsessed, but not crazy. And if I were crazy, well, I wouldn’t mind at all… as long as it didn’t bother Evan.

And now, a song that always make me think of my beloved Evan:

Okay, I lied. There is one more song that is perfect! However, it’s by my favorite artist, who Evan strongly dislikes… But it is my blog so, play my heartstrings, Iron and Wine!

https://www.youtube.com/watch?v=tCYWymG9fSs

 

 

Loud Mouth

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I have a big mouth. I wasn’t always this way. Somewhere along the line, though, I learned to talk back, something I’m especially good at when sticking up for loved ones. Even though I’m in a wheelchair and my voice is fading, I just had to say something when a man catcalled my sister Laura from his car and made her incredibly uncomfortable. As loud as I could, I let him have it in what Laura later called a “fun mix of feminist ranting and light swearing.”

Suddenly, the man drove off and Laura grabbed my wrist. “Rachel, the volume is all the way up!” she cried. I must have looked at her blankly, because she tapped the microphone at my mouth and scrambled to turn down the sound on my brand new ChatterVox voice amplifier. I totally forgot I was wearing it, and with the sound up so high, I might as well have shouted through a megaphone!

We hid by a big hydrangea bush and laughed so hard while families heading to the park and people coming home from work looked around for the crazy lady broadcasting obscenities up and down the block. I was just catching my breath when Laura said, “Well, you’re definitely still a teacher… I know those kids just learned some new words.” I started laughing all over again. She was right; I never could pass up a chance to give a vocabulary lesson.

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.