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!
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.
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.
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.
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)
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!
Those of us living with ALS or loving someone who has it are gratitude experts. Don’t misunderstand me. We have our dark, bitter moments. As we catalogue our blessings – the precious time we have had on earth, our remaining abilities – we inevitably think about the other side of the coin. Yes, I have lived 30 full years, but how many do I have left as this disease does its wicked work? I can still move my legs, but God, do I miss walking and dancing.
This post is meant to break us and our loved ones out of this cycle. This Thanksgiving, let’s be grateful for the following:
1. The exciting research currently underway
In the three years since the Ice Bucket Challenge, we have seen more progress in research about the causes of and treatments for ALS than I ever dreamed of when I was diagnosed. Just a few months ago, the FDA – with guidance from the ALS Association – approved Radicava, the first new drug for ALS in over 20 years! To keep up with advances in research as well as drug trial news, follow these organizations on Facebook or Twitter: The ALS Association, ALS TDI, and ALS News Today.
2. We are not alone
In addition to the local monthly support groups hosted by The ALS Association, did you know that this fantastic organization arranges fun events for ALS families year round? My chapter hosts a Zoo Day and a picnic gathering at a local farm. Follow your local chapter on Facebook or Twitter so you don’t miss out! You can also get support without even leaving home by joining online support groups. I belong to six on Facebook!
3. Caregivers show us love every day
I am constantly amazed and humbled by the devotion of my caregivers. Whether they are family members, friends, or professionals we hired through an agency, they work tirelessly to see to my personal needs, from feeding me to toileting. What’s more, they do it in a way that preserves my dignity. Then, I think of all the ways they support Evan. An ALS spouse is never truly off duty, so it’s easy to get behind on housework and neglect self-care. My caregivers make such a difference in Evan’s quality of life by helping out with laundry and staying with me while Evan runs errands or takes a little time for himself. Make a list of everything that your caregivers do for you. It will give you something to do during the four hours your turkey is it the oven.
On that note, remember that November is Caregivers Appreciation Month. It’s not too late to thank your caregivers with a heartfelt note or some flowers!
This post is dedicated to my caregivers: Amelia, Aubrey, Brenda, Cindy, Evan, Mallori, Melissa, Paige, and Renee (AKA my mom).
How I Live Now: Life With ALS 