Category: Husband

Tag! You’re It!

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By Rachel Doboga

Evan started doing this thing a few years ago. I call it “love tag.” If he doesn’t kiss me when he leaves the room, normally if he’s in a big rush, he gives my upper arm a quick rub, says he loves me, and hurries off to answer a doctor’s phone call, sign for a delivery of my medical supplies, or prepare my meds so we’re on schedule.

Of course, as a quadriplegic I can’t tag him back, and he leaves too fast for me to even type “I love you” on my eye gaze computer so I have to make it up to him and tell him later. Since I am always the one who is “it,” for our 14th wedding anniversary I’m going to make it up to him tenfold!

10 Things I Love About Evan

1. The way he dances, especially to David Bowie and the White Stripes.

2. He never makes me feel embarrassed during toileting and is never grossed out by me. In fact, he still says I’m adorable and beautiful after this task!

3. He’s responsible. This one sounds boring, but wait, there’s more! When he saw a woman unconscious, vomiting on the sidewalk and no one stopping to help her, he was the only person who pulled over to intervene. He turned her head so she wouldn’t choke, revived her, and offered to call an ambulance. When she declined, he drove her home and watched to make sure she got safely inside. He’s a hero!

4. He’s a music library. I love the nights he plays DJ!

5. We’re a great team. Everyone at the hospital says that, but we were a great duo before we’d even heard of ALS. Evan would play guitar and I would sing for our families. Simon and Garfunkel, Fleetwood Mac, all the music we grew up with!

6. Evan is objectively the most handsome man in the world. I can’t resist those blue eyes, and that smile makes my heart bloom!

7. He is truly brilliant. He runs all my machines like a pro, even the nebulizer (he only had 10 minutes training on it) and the incredibly complex ventilator. All the respiratory therapists we’ve ever met say Evan should be a respiratory therapist, and I agree! Plus, he reads these gigantic, 1000 page history books I could never hope to follow – for fun!

8. He’s hilarious! He is silly, does impressions, and tricks my mom and me into believing outrageous stories about history. It works every time!

9. He’s crazy creative. Once, we were just hanging out when he left the room, disappeared into his office, returned with a pad of paper and a pencil, and silently got to work. When he was finished, he said the arrangement of my pill bottles reminded him of skyscrapers so he sketched them that way. The drawing was at once medications and a cityscape. It was truly striking.

10. He defines romance. He learns love songs for me on the guitar – “Something” by the Beatles was my favorite – and he even writes songs for me. Evan makes even the smallest, most boring moments romantic. Last night when he was getting me ready for bed and about to brush my teeth, he paused. He sat down beside me, put his phone on my pillow and turned on “I Can’t Help Falling in Love With You.” Then he quietly held my hand as we listened. When the song was over, he kissed my forehead and left to go get my toothbrush.

I am lucky Evan is my husband!

* I can’t post comments or reply to them, but I can read them and I love them. Keep writing!

If you have fond memories of Rachel as a teacher in her life before ALS, or if a post on this blog has ever moved you, please consider making a contribution to Rachel’s out of pocket caregiving fees, medical expenses not covered by insurance, and transportation costs through Friends of Rachel. From your PayPal account you can donate to FriendsofRachelDoboga@gmail.com

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).

 

 

 

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!

 

 

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.

3 Things to Be Grateful for This Thanksgiving If You Have ALS

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Gratitude

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).

I Am Not OK

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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.

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, 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.

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 Wild and Lonely Belief

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9Dedicated to Dr. Goslin for giving me permission to believe, and my husband Evan, who shields me from the worst of the winter winds.

I am a voracious reader. I always have been, thanks to my parents and grandparents, who planted books around my house in places I could reach even when I was still crawling. They were treasures I was allowed to discover on my own, and as a result, they felt special and personal to me. The books I read in my childhood became a part of me in that they showed me how to dream, hope, and believe. Even now, those stories influence the way I understand the world and cope with the rocks and daggers it throws at me. When I spot trouble coming my way, I snatch up one of these books, opening it wide to use the front and back covers as a shield while I confer in hushed, hurried tones with the characters inside.

Lately the shield I crouch behind is the work of one J. M. Barrie, and Peter Pan is whispering in my ear: “Every time a child says, ‘I don’t believe in fairies,’ a fairy somewhere falls down dead… Do you believe in fairies? If you do, clap your hands! Don’t let Tinker Bell die!” I watch the children bring Tinker Bell back by clapping and shouting, “I believe!” But what good can Peter Pan’s words do me, a young woman dying of ALS? More than you might ever imagine.

You see, I have this conviction that I will not succumb to my disease. I believe I will survive this. I can count on one hand the people who share my belief. I often hear other pALS (people with ALS) talk about their sadness over the special moments they will miss after the monster we are all battling cuts their lives short. On the earth beneath which we have been laid to rest, our loved ones will blow out birthday candles, throw graduation caps into the air, walk down the aisle, paint nurseries, and build cribs. We can only hope they think of us now and then as the flowers of their lives continue to unfold long after our own blooms have wilted and shriveled.

That’s not my story, though. My blossom is wilting because winter has come, not because I am dying. Bitter winds may batter my petals, but my roots are safe and strong. They remember spring and are waiting for it to come again. I have been told not to get my hopes up, and my answer is always the same: “What harm can believing do? If I am wrong, I won’t be around to cry about it.” The fact of the matter – which I rarely endeavor to explain anymore – is that believing is a source of strength for me. After all, Peter Pan said belief can save a life. If you need to hear about the power of belief from someone with more authority, consult another prominent book from my childhood. Open the Bible to Matthew 17:20 where you will find the following words: “If you have faith as small as a mustard seed, you can say to this mountain, ‘Move from here to there,’ and it will move. Nothing will be impossible for you.”

To me, belief is so powerful because of what it inspires. The magic of belief lies in the way it empowers us to live, and when necessary, fight. I believe that I will be cured, but that doesn’t mean I expect an easy path. I know that only if I work hard and plan carefully, I will survive long enough to be cured. This conviction shapes how I live now. In order to last until the cure, I need to keep my lungs strong and clear with daily use of the cough assist and AVAPS machines. Each day, I also complete two dozen physical therapy exercises and follow my feeding tube meal program. I can bear all this and more – hours spent in the hospital for clinics and drug trials, daily vitamin injections, even a tracheotomy if my lungs fail – because I know that my story will have a happy ending.

This is my wild lonely belief: that I am not a withering rose, but a winter one, waiting with patient certainty for the sun.

Summer Dreams

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Something about spending time on a covered porch always leads me reminiscing and daydreaming. As the rain clears to make room for the summer sun, I spend hours out there, watching my dogs play and letting my mind float on the afternoon breeze, I remember, and I plan.

This beautiful weather makes me miss canoeing with Evan terribly. The sound of the water as our paddles slid through the gentle waves slowed my thoughts so I could exist in that moment, working in perfect synchronization with Evan. I especially loved our sunset excursions when the world we knew drifted off to sleep and another secret world began to stir, a nocturnal kingdom we could only glimpse before we lost the light and our way.

When I am cured, Evan and I will return right away to the water. We will buy a red canoe and name it Carlos, and he will take us on dozens of new adventures.

The other activity I am missing is something I only did once. I was shy and nervous, so I didn’t get up the nerve to try karaoke until rather late in the game. When I finally sang into that microphone, though, I was hooked. I especially loved singing duets with Evan (he makes everything at least ten times more fun). When I have my voice back, I am going to hit every karaoke bar in town!