Tag: love

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.

Photo by Tima Miroshnichenko on Pexels.com

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.

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.

Gross True Love

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At my most recent clinic, the nurse pulled out my mic-key – the feeding tube that allows access to my stomach – so they could give me a fresh one, and all of my breakfast came out like a volcano. Before the nurses could even react, Evan dove in and covered the hole with his bare hands. Remember, my feeding tube version of vomit was pouring out. Nothing grosses him out when it comes to me. Nothing. And that is true love in all its gross glory.

Please enjoy the illustration below, and have a happy Valentine’s Day!

J/K about the illustration. I love you too much to do that to you. (insert adorable, mischievous grin)

Xoxo,

Rachel “The Volcano” Doboga

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