Stepping Out of the Past to Appreciate the Present

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It’s hard to live in the present when the past feels as close as my shadow. I can’t stop thinking about the things I have lost. I’m nearly immobile, so the things I miss most are physical. I miss my feet touching the ground. I miss the luxury of scrubbing my scalp with shampoo and my face with soap. I loved the feel of writing with a freshly sharpened pencil. Above all, I yearn to wrap my arms around my husband again.

I have also lost my voice, so I have a whole other list of longing around that. To keep it brief, I would say that I miss humor the most. Being funny happens in the moment. Banter, sarcasm, puns, inside jokes, even comments on movies all happen fast. Asking people to pause so I can type a joke means the moment has passed. Trust me, there’s nothing more awkward than people silently waiting to indulge you in your attempt to be funny.

Focusing on the past has led to incredible jealousy. Most recently, I was on my way back from a doctor appointment, I was stuck in traffic downtown, and I swear, the jealousy was like a monster consuming me. Watching people walk with ease across the street, holding children the way I will never be able to hold my godson again made me glower. One man juggling his briefcase and phone answer a call. Observing him was like watching a ballet. I couldn’t believe I had ever moved with such ease and grace. The memory was both distant and visceral.

Slowly, though, I have come to accept that living in the past means I am missing an equally precious present. I haven’t stopped mourning being a part of laughter and hugging those I love. I never will. My jealousy hasn’t disappeared either, but sometimes it is not so painful. Ironically, my loss is what taught me how to live just a bit more in the present. I realized that with ALS, there’s always more to lose. I may not be able to make people laugh, but I can still laugh, and that’s something. Maybe one day, I won’t be able to laugh, so I should appreciate it. Gratitude has helped me step out of the shadows of my past to fully appreciate and experience the present. I hope it can do the same for you.

“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!

On the Other Hand

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It can be hard to “live my truth.” Just because I have had a revelation or realization does not mean I can instantly incorporate it into my lifestyle.

Especially because my hope just got a kick in the teeth. The latest bump in my pump did not work. This means more time on oral baclofen, which, remember, is heavily sedating. Being sedated is different than being fatigued because I can’t fight it. Chemicals overtake my body and my will. They rush through me, making me heavy, blurring my thoughts. I take baclofen four times a day. It knocks me out for two hours. Being unconscious so much hurts my mental health, relationships, writing, and hope.

I say “being unconscious” because being sedated isn’t always the same as sleep. I sometimes wake up fully rested, ready for an hour of activity before it’s time to pass out again. However, sometimes I wake up feeling like I have only been out a second. It’s disorienting to say the least.

Everyone, from caregivers to family, is overjoyed when I am awake, and they all want to see me. I should be flattered and feel loved. Instead, I feel pressured. Imagine if, as soon as you wake up, whoever is near you is full of energy and ready to play. When I wake up, all I want is a few minutes to myself to check my email, catch up with Evan, maybe send a few texts – all the things you do to slowly come back to the world in the morning. Because it is perpetually morning for me. In an ideal world, whoever finds me awake would express their joy, then ask if I need a few minutes. I think that would help reduce the pressure I feel and make me ready to fight through my discomfort like I decided to in my last post in order to be present for the people who love me.

I’m beginning to fear I will always need the baclofen, that the pump will never work. I honestly don’t know how much longer I can handle this. Choosing hope is harder with each failed bump.

But I know I will go on because I have no other choice. I have up to three years before my lungs fail, and even if I live like this, the time I steal with Evan makes any amount of suffering worthwhile.

Finding my Sunshine

Evan has been urging me to write since April, especially about the surgery and unexpected results. You have all been so supportive this past year during chronic spasms that left me housebound and eventually bedridden. You are what kept my spirits up. Then, I took all that love, rolled into the Operating Room with me… and disappeared.

Four days after my surgery, after spending a lovely hour in the garden, Evan and I started in on our bedtime routine, marveling at how normal it all felt. For one beautiful spring day, we had our lives back.

Then, my arms tensed and shook. Our eyes met. This could not be happening. Could. Not.

The spasms have been back for 3 months. To combat them, we have been using oral baclofen. You know, the sedating medicine that keeps me in bed 24 / 7, robbing me of precious time writing and being with Evan? That’s been particularly tough on me. We have also repeatedly experimented with increasing the dose of baclofen the pump pushes into my spinal cord. I will have another bump in a few days. I truly believe this will be the final increase. I have to because, as Eleanor Roosevelt said, “When you reach the end of your rope, tie a knot and hang on!”

Where am I now?

I just had a great clinic. My leg spasms are gone – arm spasms are more stubborn – so I can breathe easier. As a result, I just got my highest breathing scores in a year! They went up 27%! Confetti! I need to have my chair basically restructured as a result of increasing disabilities. I need a new back with guards on the edges so I stop slumping left, arm trays to keep my arms from sliding off, lower or deeper slanting foot plates so my pointy feet can rest safely and comfortably, and a controller on the back so Evan and other caregivers can drive me. That’s a lot, I know, but I am certain these modifications will double my chair time and improve my comfort and safety.

Once this is done, I will feel comfortable getting out of bed more and doing outings, maybe to the art museum! I don’t know how long it will take to reform my chair, but I have patience and enthusiasm!

What have I done with my experience?

“You don’t have to be totally comfortable all the time.” This has been my mantra for a while now. Unless something is becoming painful or interfering with what I am doing, I don’t have to give it attention. Is everyone really walking around 100% comfortable all of the time? Of course not, but it doesn’t hold people back. Pre-ALS, the most uncomfortable I have ever been was dancing ballet. My toes were bloody and mangled to the point where I couldn’t have the the weight of a blanket on my feet at night. I actually used my Beatrix Potter baby quilt. Aww!

The discomfort of wearing shoes during the day didn’t stop me from going to school, work, or out with friends.

I have decided to treat fatigue the same way I treat discomfort. Teaching left me exhausted, but I didn’t let that be a reason to stay in bed. I have to face the fact that I will probably never be energetic as I was. The fatigue is a weight on me, but it is a weight I can function with.

Finding my sunshine and how you can find yours!

In a recent conversation with Melissa about the frustration of life after surgery, she said, “Maybe this is more of the disease’s ups and downs.” I realized I had been waiting for the full days that would be ups, but depending how the baclofen pump experimentation goes, it could be a long time before I experience that. I also realized that I am having ups right now, though they’re only for a few hours. They still count. In those hours, I can have family and friends visit, take a trip to the dog park, maybe even head downtown. I just have to balance my “sunny ups” with listening to my body. I am learning that I need a day to recover from the visitors and outings, but that doesn’t diminish the joy that I find those active days. It just means that I have to be resilient and creative on my down days. I may find passive joy those days by bing watching a show I love or listening to a funny podcast. The ups and downs are about not letting the hours I sleep from sedating medicines rule my schedule. It’s about letting joy, whether on a down day or an up, define me.

The Lesson:

Joy is whenever you look for it! Even in scraps of minutes or an hour. Let that be your focus, and your resilience will astound you!

My Pain Management Strategies

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Mighty Mind Strategies for Managing Pain

 

Over the past year, I have become an expert in pain, something I never wanted to be. However, daily severe muscle spasms, cramping, one surgery, and an Emergency Room visit later, here I am. Despite my plethora of pain medication, I still suffered. Then, I realized that I needed to engage my mind to manage the pain. I devised a few strategies to cope with the pain, which I will share with you now. Keep in mind that pain is highly personal. Just because these strategies work for me doesn’t guarantee they will help you. However, I sincerely hope that they do.

 

1. Put your pain in a vessel – I visualize a large clay jar. I imagine shouting my pain into this jar, pouring it all in until there is no pain left in me. I put a lid on the jar, locking all the pain away. Then, as the pain ends, I set my jar in a river and watch the water carry it away.

2. Let the pain wash over you – For this strategy, I picture myself as a boulder in a stream. The pain is the water moving around me, insignificant and unable to affect me. When I was in an ambulance, this one actually took my pain down from a 7 to a 3.

 

3. Meditate on the temporary nature of pain – My best friend is training to be a vet, and one of the toughest things about her job is that she can’t communicate to the animals that their pain will end after she treats them. As humans, we have the gift of understanding time, and that how we feel now probably won’t last forever. I have such a terrible time with chronic muscle pain due to severe spasms that I have been unable to write my column for months. Part of what gets me through this nightmare is focusing on the relief I will have when my pain medication kicks in. I know that in one hour, the medicine will take the pain away.

4. Cry, scream and beg – I used to think crying and vocalizing my pain meant I was weak. Now I know that it actually helps. I tend to hold my breath when I am in pain. When I vocalize, I have to inhale. It also gives someone a cue to comfort me by making my suffering visible. I have a theory that pain is much less powerful when you don’t have to experience it alone.

For the Love of Dog

 

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I have become a tobii wizard. It’s true. Once upon a time, it took me fifteen minutes to type one paragraph. Now, I glide across apps, carrying and adding to my content, dipping into shortcuts to rearrange my words into uniquely crafted messages that sound authentic to yours truly – all at a speed that constantly wows clinicians. Despite my skills, though, using the tobii is still taxing work. I will never be fast enough to keep up with the natural flow of conversation. Still, I hurry and exhaust myself in the process.

However, there is one individual who eases the tension of the race to communicate because she is also nonverbal. For five years, Malka (introduced in “Someone to Watch Over Me”) has been my faithful, furry companion. On the surface, we don’t have much in common: she has four legs and I have wheels, she swallows her kibble whole and a gravity bag slowly drips formula into my stomach. I am becoming¬† more mechanical, and she remains pure, divine animal. But when we lay down side by side, we speak our own secret language. Eye contact and perked ears or my raised brows, touches, wiggles, and wags… There’s nothing we can’t say, and our talks are just my speed. She’s a source of solace like no other as I fight the monster inside of me, and sometimes when she looks at me, I swear she understands what I am fighting and her role in the battle. I am endlessly grateful for my silent soldier.

This song reminds me of my fur baby every time I hear it. It also reminds me of Evan, but pretty much everything does. “We laugh until our ribs get sore, sharing beds like little kids” even though everything outside of them grows scary. At least we have each other.