“And I Think to Myself, What a Wonderful World!”

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Every time I go to a doctor appointment – my main reason for getting out of bed and into my uncomfortable wheelchair – I blink at the brightness of day. The blue summer sky is blinding, and it always takes a minute to adjust. Once my eyes accept the sunshine, I immediately wonder how I’ve been living without it.

I’m always aware of the difference between me and those who enjoy sun-kissed lives; every time Evan or a caregiver touches me, I am jarred by the contrast of my unnaturally pale skin and their healthy tans and gold tones. I do envy them, but I have been too sedated to venture outside.

Until now.

My insurance finally approved a medicine called Provigil, which will help me stay awake for four plus hours! I tried it out today and was amazed by how alert I felt. I was even able to talk to my mother-in-law about books like we used to do!

I can’t wait for my experience of sunshine tomorrow when I go to yet another specialist. I HIGHLY recommend this drug to anyone who has also been missing out because of sedation or ALS fatigue. Ask your doctor about it.

I may still have spasms, but consider my hope for a few hours of normalcy renewed!

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).

 

 

 

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.

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

My Depression Diary

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Trigger Warning!

Forward:
When just over a month ago I sensed that my mind was changing, I was overcome with a frenzied need to record everything I thought and felt. Even before I understood that I was depressed, I realized I was going somewhere that outsiders could never truly visit. I became consumed by the need to write a message from the inside that could maybe serve as a map or even just a sign that says “Keep Out! Here Be Dragons!”

Not so long ago, sharing my diary with strangers online never entered my mind, not even in my worst nightmares or wildest dreams. It was that impossible. However, that was before ALS. The same rules – even my own most personal code – no longer apply. I am braver because I am a soldier now. I take risks because that’s how you fight. This way, even if I die before the cure comes (and it will come), I’ll go knowing I made the path less lonely for my fellow soldiers and just a little easier for those who come after me.

I didn’t sign up for this war, but my enemy means to kill me, so I must give everything I have and am in this fight. Privacy is a luxury long gone. I will share my most secret thoughts and vulnerable moments in service of my fellow soldiers and the people who make my life worth fighting for. Right now, that means showing you what it’s like inside the beast that senses we are battle worn and easy prey. My hope is that if you read my diary and recognize yourself or a loved one in these words, you will realize it’s time to call for reinforcements, whether in the form of a psychiatrist who prescribes antidepressants, a therapist who talks you through the climb out of the pit, or a priest or pastor who provides solace and guidance.

To learn more about preventing and identifying depression, read my ALS News Today column12212627122128. I will share a follow-up post in the next few weeks on different types of intervention and how to choose which is right for you.

Now brace yourself. We’re going in.

Entry 1:

I am choking on the strength of this episode. It wraps ever tighter around my throat, just like his hands. As I write this, I am sitting in bed, watching a funny show while checking my email, text messages, and Facebook notifications. It is the middle of the night, a time of terror for me, so I need the safety of the blue electronic light of my devices. I bask in the glow, then I drown my thoughts in sitcom banter and a whirlwind of multitasking.

Burying my dark thoughts is a high stakes game; if I don’t use the right maneuvers, the shadows win. No matter how scared I am now, it is nothing compared to how I will feel if the memories creep in. The memories open the floodgates of flashbacks, which will sweep me far away and back in time to that room where I was raped and nearly murdered.

I escaped with my life, but certain parts of me died there, namely the part that believed no one would ever hurt me. Well, actually I had never really considered that I could be a story on the news as easily as any other human. I held myself apart in the way we all must to some degree if we want to function in the world. Dwelling on our abject vulnerability would reduce us to terrified shells of ourselves.

Like me.

Entry 2:

I can’t close my eyes in the dark. I can no longer write, I can’t focus on reading. All I can do is mindlessly watch TV. I am afraid to sleep because I want to remain vigilant, and I know nightmares are waiting for me. I am resuming therapy, or at least that’s what I tell myself, but I am desperate for a quick fix. I know that no miracle pill exists to give me relief, but I have been living with PTSD for eleven years, never knowing when it will become active and derail my life. I’m exhausted.

Entry 3:

Thinking about “the event” again. I guess writing “rape and attempted murder” became too clunky since I keep doing it again and again. I wish there was a word for that crime.

Here’s something weird: I had actually been in that room before. It had a great view of the Gulf of Finland, so I took a picture. I put in black and white because I thought it made the photo look artsy. During “the event,” I turned my head so I was looking out the window at that same view. I remember making that choice because I wanted to escape my body. Maybe I succeeded because when I look back, I can only remember the black and white photo. The memory lacks color and sound. In fact, that whole night remains in perfect silence, as if I stepped into the photo because inhabiting my skin was that unbearable.

I also sensed if I looked up, I would not survive. I couldn’t articulate it then, but in hindsight, I realized that it I were to look, I would have to confront what he was doing, and I didn’t want that image in my head. If I looked at him, the image would take over my brain like a fungus I saw on a nature show. The fungus commandeers the ant so that it becomes disoriented, out of touch with reality and its purpose. Ultimately, its new biological imperative is no longer survival. It follows the final orders of the sadist in charge by climbing as high as it can. Then, when the ant is paralyzed by vertigo and weakness, it gives in. The fungus cracks the ant and blossoms, sending its spores far and wide, aided by its victim’s lofty position.

Summary: if I looked up him, the images would have devoured my mind until I forgot who and why I was, creating so much pain that suicide started to look attractive.

That kinda happened anyway, though…

Entry 4:

My doctor came to see me. I can’t believe that I didn’t realize what’s going on until she talked to me. It is classic crying, lack of interest in anything, wanting to stay in bed depression. It is not the most severe I’ve had. On a scale of one being fine and ten being suicidal in the mental hospital (true story), it’s a five.

The PTSD fuels the depression by isolating me. I’m so mad at myself. I want to be stronger and fight this off with logic, but everything is scary. It makes me think of Alias Grace by Margaret Atwood. There’s a great quote when Grace says something like, “Quilts are so bright like war flags, I think we put them on beds so you take notice. You see the warning that the bed is a most dangerous place.”

That’s how I feel when I get in bed. I still feel the danger of a crime long since committed against me, so I stay awake on guard all night. When dawn comes, I finally surrender to sleep. The end result of all this fear and hyper-vigilance is loneliness. I am only awake when my friends, family, and beloved husband are asleep. I want to have friends over, go write in the beautiful library, and spend awe-filled hours in the art museum. I perpetuate my isolation by refusing to reach out to them.

I also play this game where I don’t contact them and then wait to see how long it takes for them to contact me. The longer it takes for them to contact me, the less they obviously care about me. It’s a shitty game, but I can’t stop playing.

Entry 5:

I feel like a raw nerve in pain after any interaction. I wish I could read substantial books. My intellectual hunger still rages (a good sign), but my concentration is too poor to make it through even the first page of any appealing titles.

Also, lately the library doesn’t have e-book versions of what I want, and I took this REALLY personally. I reacted as though this was a commentary on how little society values me as a disabled person. I am hung up on that anyway because of all the times President Trump has negated the value of the people with disabilities. From mockery to attempts to gut Medicaid and defund ALS research… I don’t want to let him me this way. It’s just that everything hurts me more now that I am depressed.

Entry 6:

I am starting to think this is happening because I am repressing sadness, which is a pattern for me, which I discussed in the post Leaves in My River, Stars in My Sky123127128123129.” I mean, the major thing that I have been crushing for years is sadness for Evan. If I really think about his situation of watching me slowly crumble, if I empathize and imagine myself in his shoes, I feel like I’m dying in a way ALS has never achieved. Knowing he cries in the car makes me sick. I sob hysterically until I can’t breathe. Imagining I’m the one crying in the car because I am losing him is unbearable, and I am grateful that I am the one who has ALS.

Entry 7:

Evan says to go easy on myself. Getting frustrated with myself does great harm and zero good. I can’t berate myself into ending the episode. I guess it’s time to learn to show myself the compassion I apparently think everyone but me deserves. After all, if I am not on my own team when I’m at my weakest, how will I fight my way through this? I know that logically. Now I have to figure out how to live that truth.

Wish me luck. I need it.

A Happy Halloween

I consider this Halloween costume an absolute success. I dressed as the Little Mermaid, and had a sign on my wheelchair to tell people that ALS stole my voice! Ursula, you’re off the hook. Plus, I had some royal arm candy (wink wink).

I am glad I was able to dress up and pass out candy to a gaggle of cute kiddos. Earlier in the day, I had such severe pain that I missed some important doctors appointments. I do take an abundance of pain medication, and it works well on days when my spasms are mild, but when they are more intense, my body locks and shakes so violently that my joints hurt. Afterwards, I am breathless, exhausted, and so sore I feel like I just ran a marathon.

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As I wait for the surgery that will fix the problem of my spasticity, I am learning that a key to living happily – with or without ALS, is to practice resilience. I say “practice” because it is a skill that takes intentional, daily cultivation. I used to think of resilience in terms of bouncing back after a major life event, such as getting fired or going through a break up. Now, I understand that resilience doesn’t mean bouncing back. We are not deflated basketballs who will return to their original shape with an infusion of air. Difficult events, large and small, change our shape, so we can’t return to how we were before our day is marred by illness or a boss who shoots down our exciting idea. We are human, so we experience anger and sadness. The trick I use is to give myself a bit of time to feel those emotions, and then set them aside to salvage the remainder of your waking hours either by carrying on with your original plans or practicing self-care by doing something rejuvenating. If you choose a passive activity like binge watching your favorite show, check in to make sure you aren’t just numbing yourself by asking questions like, “Am I enjoying this? Is my mood improving?”

Note that I am not suggesting that you bury your feelings. I am saying not to let them rule. Revisit your feelings as much as you need to in order to be at peace. Put in the time and work to process your emotions. That may mean discussing your feelings with a friend, venting in your journal, or talking to a counselor. Just know that repressed emotions always rise up, and when they do, they tend to feel ten times worse.

Also keep in mind that salvaging a rough day that isn’t always possible. Some days really are ruined by traumatic events  – for example, taking a loved one to the ER  – but hopefully those are few and far between.

5 Ways to Build a Relationship Stronger Than ALS

“Relationships aren’t perfectly symmetrical and that’s okay.” – Melissa Rothstein

After my diagnosis, I learned that no matter how long someone has been in your life, ALS causes such dramatic change that you will have to lay a new foundation for your relationships. When I felt my relationships fracturing under the strain of my mysterious disease and growing disabilities, I realized I needed help. I turned to my best friend, Melissa Rothstein.

Melissa has been living with Crohn’s Disease, a debilitating chronic illness, for ten years, so I knew she would understand my situation. Plus, as a program coordinator at the Wellness Center at UC Davis, she saw the isolation disabled students faced and the way it damaged their mental health, so she worked with the counseling staff to build community amongst the struggling students. In doing so, Melissa became an expert on managing relationships while dealing with disabilities. She has always given me great advice, and now she was uniquely qualified to help me with my social dilemma.

As we worked through individual challenges when they arose, I began to put together a list of ways to strengthen my relationships. The list worked so well that I decided to share it in an article. I interviewed Melissa to gain some final insights and help me articulate my thoughts. Thank goodness I did because she reminded me that self-care is a vital part of a healthy relationship. We have her to thank for step number three.

You can lay the foundation for healthy relationships by following these steps:

1. Educate your loved ones

Making sure they understand what is happening to you means that they will feel less afraid and overwhelmed. These emotions tend to create distance in relationships. I like to share this two minute video (https://vimeo.com/165626427) with friends. It explains how ALS works, what the future holds in terms of progression, and it ends on a hopeful note, citing the fantastic research currently underway. I email it to loved ones, and I let them know that I am happy to answer questions. The video shrinks the task of educating people while opening the door for discussion.

2. Keep in mind that each friend will react differently.

Determine how much to tell each friend about your health and emotions in order to avoid making people uncomfortable and protect yourself from being vulnerable with someone who can’t offer you support. If someone has always been more interested in casual fun than heart-to-hearts, they probably won’t change into a sensitive listener just because you have ALS. Consider each individual’s personality before confiding in them. You can also figure out how much to tell someone by their reaction to a basic update. If you say, “I’ve been having a rough time with some symptoms lately,” the friend who asks follow-up questions can handle more than the person who simply says, “I’m sorry to hear that.” Knowing who to confide in – and who not to – can save your relationships.

3. Put your health first.

Be clear about your needs and limits. This will prevent problems and misunderstandings later. “People can’t reconcile how enthusiastic I am in a relationship with how often I cancel plans, don’t call, seem absent,” Melissa shares. “For me, canceling plans has been an enormous source of stress and lower self esteem. Plus, it often gets interpreted as me not being as interested anymore in the relationship. That leads to them thinking I just don’t take their needs seriously. I have learned just be really up front about what’s going on.”

Put your health first by:

– Learning to say no. Melissa says, “I changed my default response to be “let me think about that” rather than saying yes to everything and then having to back out later. [This way] I don’t get overextended, burn out, and act inconsistently.”

– Setting a time limit. Try saying, “I’m free from 4:00 to 6:00” instead of “I’m free at 4:00,”

– Planning manageable activities. Be realistic about what you can handle. If attending a football game will exhaust you, suggest an alternative: “Thanks for inviting me, but I have to pass. I’d love to watch the next game with you at home, though.”

– Being mindful of your schedule. If you are having a friend over to watch a movie, leave the next day free so you can rest and recover.

4. Be prepared when people ask to help.

Your friends and family will be eager to help you, but they may not know how. Consider using the surprising and insightful list (https://alsnewstoday.com/2017/09/12/als-patients-heres-how-to-help-your-friends-help-you/) ALS Wellness Blogger Dagmar Munn created. Accepting help empowers the people in your life and encourages new intimacy in relationships. However, since accepting help can make the relationship less symmetrical, it can be difficult to do. Melissa offers insight that helped her overcome this hurdle: “[I found out] people like to help me as much as I like to help them.”

5. Reassure your friends that they matter.

Remind loved ones that even though you are sick, there are still two people in the relationship. My friends struggled with talking to me about themselves because they compared their own problems to ALS. I have to constantly reassure them that their lives are as exciting to me as ever, and their problems are still important. Ask specific questions to get your loved ones talking. For example, if the conversation stalls after you ask, “How have you been?” follow up with a question like, “How are things going with your new supervisor?”

Follow these guidelines to make your relationships stronger than ALS!