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.

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 Art of Car Crying

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This one goes out to all the people who can’t cry at home. Whether you are trying to be brave for a loved one or just don’t have the space or privacy to cry at home, I hope this gives you some relief.

Step 1: Park your car somewhere safe, like the edge of a parking lot of a big box store or an off-season community space, such as a pool or tennis court.

Step 2: Be aware of your surroundings. If someone approaches you looking concerned – which has literally never happened to me – don’t roll down your window, just wave them on. They are obviously a carjacker.

Step 3: Let it all out. If you have trouble getting started, listening to sad music usually works. You can also try a crying playlist. This one has 118 songs. 152152149153 This means that if one doesn’t work for you, you can click next until something hits you.  I have included my favorite tear-inducing tunes below.

Step 4: You’ll know when you are done because your mind will start to wander to something unrelated, like if you have enough lettuce for dinner (don’t worry about it; no one really likes lettuce). Also, your breathing will even out.

Step 5: Take ten deep, slow breaths, counting to four as you inhale and six as you exhale.

Step 6: Carry on.

These are my top three go-to songs for crying. The first one completely wrecks me because I always think of my husband Evan. Indie, country, pop – there’s something for everyone (probably).

 

 

 

2017: A Year of Big Advances in ALS Research

It’s time to celebrate what your donations accomplished in 2017! Let’s keep up the fundraising and advocating so that 2018 will take us even closer to a cure. ALS doesn’t quit. Neither can we!

The Official Blog of The ALS Association

In 2017, many new research discoveries and collaborations accelerated the momentum toward finding treatments and a cure for ALS. We helped lead the way by awarding several new grants to top scientists and clinicians. We currently fund over 126 projects in eight countries, furthering the best ALS research in the world.

Here are just a few of the biggest advances in ALS research this past year that give us hope! All projects were funded by The ALS Association.

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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.

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!

 

 

A new approach to preventing and identifying depression

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Depression is a sneaky beast. It’s the monster beneath the bed, waiting until you’re vulnerable to grab you by the ankles, drag you into its dark, misty kingdom and leave you to wander alone.

I’m just stumbling out of a two month-long bout of depression. I knew I was at risk. In fact, the entire ALS community is at risk according to an extensive list of risk factors 125 complied by the Mayo Clinic.

Chronic illness, major life changes, and stress or trauma are all risk factors for developing depression. Sound familiar? Of course, genetics plays a role, too. My family has a strong history of depression, and I am a link in the chain.

On top of understanding that I was vulnerable on multiple fronts, because this is far from my first rodeo, I know the Mayo Clinic’s official list of symptoms of depression (available here) 126 by heart.

A few symptoms most relevant to my experience are:
1. Persistent sadness
2. Lack of concentration
3. Irritability

Still, despite battling depression for over a decade, I didn’t see the beast coming or even recognized it when it took over my life. The world just grew dimmer by the day. With all of my experience, how did this happen?

I have learned that once the fog of depression envelops a person, seeing the world clearly, let alone recognizing what is happening to you, can be next to impossible. I kept a diary during this round, and looking back, it’s clear that I didn’t link my actions — the way depression manifests in me — to the symptom list.

For example, here is an excerpt from one of my diary entries: “My sadness for my husband Evan is absolutely crushing. If I really think about his situation of watching me decay, if I empathize and imagine myself in his shoes, I feel like I’m dying. Knowing he cries in the car makes me sick. Imagining I’m the one losing him is so unbearable, I end up sobbing to the point that I can’t breathe.”

Read my entire Depression Diary127 if you would like to gain a more concrete understanding and my experience living through a depressive episode.

I knew I felt sad, but even though these fits of crying happened several times a day (meaning my sadness was clearly persistent), it just didn’t occur to me that my feelings weren’t landing in the normal range of human emotion. To learn more about the difference between sadness and depression, click here128 to read Guy Winch’s article “The important difference between sadness and depression… And why so many people get it wrong.”

After a few weeks, I was in agony. I felt like some dark, toxic thing was gnawing through my chest. I have felt like this before — many, many times. However, it wasn’t until my concerned doctor made a house call after I kept canceling appointments that I realized I wasn’t just experiencing difficult emotions. Rather, I was sick and need to be treated. She pointed out that since I was already on antidepressants, a small increase in dose could have me feeling better quickly. Now, I am well enough to reconsider my treatment plan, and I have decided I could benefit from therapy.

My story looks like it will have a happy ending, but there was so much needless suffering along the way. Plus, if my doctor hadn’t come to me, I would still be wandering in the fog of depression, unable to see the landmarks that told me where I was. Knowing that everyone in the ALS community is at risk for depression, I propose a different way to go about identifying and, subsequently, seeking treatment for this disease. Rather than relying on self-insight when our vision is at its most blurry, let’s learn to watch out for each other.

People living with ALS125129, family members, and caregivers should become well-versed in the entire list of symptoms, because each person may have a different set of symptoms. One doesn’t actually even have to be sad to have depression. They may oversleep, gain weight, and lose interest in work and hobbies. If we are all aware of the different ways depression can manifest, we will know that sudden, dramatic changes in behavior may be due to a sicknesses that needs to be treated as soon as possible.

Every day, we fight an epic battle against ALS. If we have any hope of achieving a high quality of life in the midst of this struggle, we need to keep our minds mighty and well. As in every aspect of this war, we can only succeed if we watch over each other.

This piece was originally published by ALS News Today in my mental health column, “The Mighty Mind.” In my next column with ALS News Today, I will discuss different types of treatment options for depression