Three Years

Me, 2020, three years post diagnosis

 

Three years. It feels, sometimes, like a blink. Like when I open my eyes everything will be right again. But most of the time it feels like another life, an alternate universe, a different me. I admire her, I envy her. I miss her. She does the most unremarkable things with her body but they leave me in awe.

The voice I used to be embarrassed of when I heard myself in recordings sounds so beautiful to me now, strong and feminine and nuanced. I want to carry it around with me to play for people. So that they know I once sounded smart and capable. So that they don’t make assumptions about my intellect based on my slurred speech and disturbed voice.

The other me maneuvers around the kitchen in a home video, she picks up her child. She laughs at something someone says. Her body moves easily, like it’s nothing. She’s so strong and able, sexy and full of life. Perhaps not particularly special compared to those archetypes of western beauty, but from where I sit now she’s breathtaking. I’m proud of her. Proud that I used to be her. Mystified by the insecurities she has. How does she not see how beautiful she is?

She used to feel close, like a phantom limb but for my entire person. My body felt like hers. Like if I took a step my legs would know exactly what to do and I’d walk. Because haven’t I always walked? Haven’t I taken countless steps?

But these days she’s mostly distant. These days it feels like she’s already dead, and I’m here, in this strange limbo where my heart and mind live but my body’s a broken shell.

I miss her. I wish I could be her again. I wish so hard for her. But she’s gone.

 

Me, shortly before my ALS diagnosis.

Pictures of me from shortly before my diagnosis

See Me

I don’t want ALS to be the thing that’s interesting about me.

Throughout my life I never felt that I was especially funny, clever, or beautiful. It wasn’t a bad thing. I just had the self awareness to recognize that I was more average than extraordinary. And that’s perfectly okay.

A lot of people are interested in me now. But do they really see me?

Beauty

Memories #3

I’m jumping way into a later memory. I have a whole list of childhood memories I still want to share, but today I only want to write about this.

When I was twenty-three I had my first child. Thinking about it now it seems alarmingly young. But at that time it felt completely natural.

I could write for pages and pages about the birth, but this post is not about my birth experience. The only relevant information is that I was in labor for 36 hours in a whirlwind of pain, fear, and fetal distress. So when he finally came, after what felt like waging war to bring him into my arms, I looked at him and he was the most beautiful thing I had ever seen. I couldn’t take my eyes off him. I remember staring at his face for hours babbling incoherently to try and express to those around me the sheer magnitude of his beauty.

I’m sitting here now still unsure of how to explain this to you. I have never seen beauty like that before or since, even when I had my next two children. When I look at his newborn pictures I can see sort of the edges of it, but it’s not quite there. It was something incapturable. I don’t know if it was the stress of the birth, or the magic of him making me a mother for the very first time, or what exactly it was, but gazing upon his face I wanted to weep with the ethereal beauty of him. I probably did.

He was a luminous fairy child, or perhaps an angel fallen into my arms. He was mesmerizing. He was perfect. He was mine.

Today I keep thinking of that absolute beauty, the way it branded me, the way it turned me inside out. If I close my eyes I can almost see it once again.

 

Note: I’ve decided not to include a newborn photo of him with this post. He really was a gorgeous baby, but this about something that doesn’t quite show up on camera. Something spiritual or magical that existed only in those first hours. That is what I want to share with you.

Autism Acceptance Month

Reza (age 6) loves being pushed on the swing

I originally posted this on Facebook and have been meaning to add it here on my blog. Happy April!

It’s Autism Acceptance month and I want to tell you about autism at our house. I’ve had the hardest time writing this because I don’t want to sugarcoat it and ignore the struggles, but I also want you to understand how amazing it is at the same time.

headphones!

Autism at our house is getting to witness pure joy, the kind of untainted undiluted joy the rest of us can never quite reach. But my son experiences it daily. Autism is dimples and squeals and chanted echolalic songs. Autism is music and vibration all over our house and everywhere we go. Tapping it, tasting it. It’s his language, the one that comes naturally to him unlike ours. Autism is movement. It’s running free, climbing high, it’s bare feet and unashamed nudity as the world rushes by and he cants his head to capture the dizzying beauty in his peripheral vision. Autism is being hand-led to whatever he needs all over the house. Autism is him taking my hand to run it over his skin, his way of asking me to lightly scratch his back and arms. Autism is the way he sometimes looks into my eyes, and it’s so rare that it feels like a jolt to my heart, like I can’t even breathe because it’s so intense. Autism is feeling over the moon with pride and joy every time he conquers something new, no matter how small or odd it may seem to an outsider.

Rain dance

 

But autism is also anxiety and sensory overload. It’s him not understanding or feeling in control of what’s happening to him. It’s melting down with no control over the spiral, lashing out with teeth and flailing limbs, it’s banging his head. It’s being awake for days. It’s an inability to trust unfamiliar foods or tolerate triggering textures. It’s working ten times as hard as other children but still falling years behind them in developmental and academic skills.

 

 

 

singing to the mountains

Autism isn’t easy. But it is worth it. My son is the brightest light in any room. His eyes are full of stars and I just wish I could see what he sees. He is a six year old who has never performed a deliberately malicious act in his entire life. Neurotypical kids do mean things deliberately just to be mean from the moment they figure it out as little toddlers. It’s heady, a rush. But Reza never has. It doesn’t even occur to him. He’s the purest most beautiful soul I’ve ever met. Even when he’s lashing out in a meltdown, kicking and biting, it’s never malicious. He’s never trying to hurt anyone. He’s panicking and terrified and trying to rescue himself.

He’s so strong and so much fun to be around, even when he’s driving us nuts he still makes me smile.

 

 

Reza on his 6th birthday

A world without autism would be such a loss. Like sucking the light and color out of our human diversity.

Autism is hard. I wish my son didn’t have to go through its hardships. But autism is who he is, he is Autistic. It’s what makes him shine so bright, no matter the difficulties along the way.

At our house, autism is celebrated, and autism is home.

The Curliest Things

Memories pt. 2

From the time I was maybe 13, until shortly before I turned 16, my two best friends were Tara and Clara. The three of us were inseparable.

Let me tell you, I mourn that kind of closeness. I mourn it. We’re all too closed off from each other as adults. But when you’re a kid and a teenager, you give yourself completely to friendships, soul laid bare, and there’s a kind of pure, total acceptance that washes from them over to you covering even your darkest corners.

That’s the kind of friendship the three of us had.

This was in Prague, and we were all TCKs- third culture kids, meaning kids growing up in a foreign country, not quite fitting in with the natives, but not fitting in in our home countries either. We fit in anywhere and nowhere. We’re adaptable, we can navigate other cultures, our parents’ one included, and “pass” like a native, but really it’s not home. Nowhere is. It’s lonely, but other TCKs “get it.”

We were all TCKs, but from very different backgrounds. I was a missionary kid, Clara’s dad worked at the Spanish Embassy, and Tara’s dad was in the oil business.

Somehow, we were magic together. We called ourselves the “Curliest Things.” It made perfect sense to us at the time- curly meant wild and spontaneous, curly was unconstrained joy and mischief.

It came about somehow relating to hair. I believe we’d been talking about the beautiful, tightly coiled curly hair one of Clara’s darker skinned Spanish friends had. We just agreed completely that curly embodied free spirited perfection. It was like that elation Ramona felt when she “boinged” her classmate’s curls. Though we all three were straight-haired brunettes, we knew, in spirit, we were absolutely the Curliest Things. And we used the adjective “curly” freely to describe things that were just quintessentially…curly!

We also developed monikers and little mascots for ourselves. I was Snek, (pronounced shnek), which means snail in Czech. Something about the way a snail can hide but then poke its head out and be ridiculous just fit. Clara was Giga, pronounced yeed-dya with a heavy Castillian accent. I’m not sure if it was a real word, but for us it referred to a cute little hamster (pronounced khamstehr because..that’s how Clara said it with her accent). Tara was Chiquita Banana, pronounced in sing song Chiquita Ba-naaaa-nah! Chiquita Ba-naaaa-nah! Chiquita Ba-naaaa-nah! (yes three times, and it was from a commercial we thought was very “curly”).

We scribbled our little emblem all over our notebooks and papers at school. A snek, a giga, and a chiquita banana encircled by a ribbon of curls (think tight loops over and over encircling our little mascots).

Our language and interactions were a cultural mishmash. We kissed hello (Spain), some words we used in Spanish, Czech, or English, or with one of the above accents. We said “as well” constantly (Tara’s dad was British and they say that instead of “too” but also just kind of all the time as a filler).

And we slept over each other’s houses a lot. Laying snuggled in bed together giggling and talking late into the night is one of my favorite things to remember. I just remember that feeling of pure happiness and best friend closeness.

Sometimes only two of us could sleep over, and not all three. When it was just me and Tara, it was our normal, beautiful platonic best friends kind of snuggling in her bed until we fell asleep. But when I slept over Clara’s and it was just us, we would spoon tightly, and I remember how perfect she felt in a way that wasn’t completely platonic. It was very innocent, just feelings I didn’t really understand at first. But when we held each other it felt different than when I snuggled with Tara, and we curled our bodies around each other more sensually.

I did discover I was bisexual as a teen, but looking back I’ve always wondered if she was. Spanish people are very physically affectionate and it’s totally “straight” behavior for them, but when Clara and I were alone it always felt a little more. Maybe that was just the perception on my end though.

In any case, the Curliest Things marked the end of my childhood and the transition to the teen years. I will always miss the innocent mischief and perfect sisterhood we had together.

 

 

The dog and the chocolate croissant

Chocolate croissants, top left, in a Czech bakery

I’ve decided to start sharing some of my favorite memories. I feel like droning on about my life and times is kind of narcissistic, but as I’ve been catapulted into the winter of my life prematurely, I think I’ve earned the right to it. And because people feel bad for me, they’ll force themselves to sit here and read it (teasing..but really :)).

There are some very early memories that are mostly mundane but somehow my mind clings to them, turning them over from time to time like well loved dog eared photographs. I have a specific one where I must have been about three and my mom carried me downstairs while I was sick and held me in the rocking chair and rocked me. Just this little snippet but it’s so drenched in feelings of warmth and safety.

But this post features me as a third grader in a little village outside of Prague called Hostivice, where we lived. Every day on my way home from school I scrounged up enough change to buy a croissant from the bakery. Back then these things cost what amounted to fractions of a cent.

And everyday I’d stop at a small gated property. Just through the gaps I could see a dog, and he was always there, all day, locked in the small cobbled front behind the tall gate. He was scruffy and scraggly and wary.

He growled at me at first. I got it in my head that he was mistreated, or perhaps simply neglected, and my heart ached for him. So I began sitting down on the other side of the gate, talking to him quietly while I ate my croissant and passing him small pieces. The gate was mostly solid, the metal gone green with age. But there were a few round and slanting decorative gaps through which I could see him and pass him some croissant.

Over time he began to trust me. He would wait for me at the gate expectantly, and a few times he even jumped up so I could briefly feel the swipe of his tongue through the gaps. I fell in love with him.

Worried over his skinniness, I began saving my change more carefully so I could buy two croissants, and give him one of them to eat all himself. (I should add that my child self would have been horrified to learn that chocolate is harmful for dogs.)

One day I arrived at the gate and he wasn’t there like he should have been. Dread churned in my gut but I told myself he’d be there the next day. But he wasn’t. For weeks he wasn’t. Then one morning I came to the gate and a fluffy little black puppy was there, yipping at me manically.

I understood then that my dog wasn’t coming back and it hurt.

I never paused at the gate again.

Looking back as an adult I don’t think the dog was neglected or starved, I think he was just old, and one day he died. Peacefully I hope, dreaming of chocolate croissants.

He was a companion and confidant. Even though I never got to pet him or even get a full unobstructed look at him. I loved him in that way a child can love a dog and I still think of him.

Walk to Defeat ALS

Me and Reza

Hey all! I know I haven’t posted a new entry in a while and that’s because life. 🙂 But I wanted to share that me and my family are going to a local ALS walk and raising money to support research, equipment, and services through the ALS Association in Massachusetts. The ALSA has helped me with things like loaner equipment, paying for a wheelchair ramp for our home, grants to help with costs related to living with ALS, and emotional support. They are also one of the sponsors for Hope Loves Company, otherwise known as Camp HLC, a sleep away camp for children who have a parent with ALS.

You can support me in the Walk by donating or, if you’re anywhere near central MA, joining my team and walking with us!

This is my page for the Walk: HERE   To donate, click the link and then click the red “donate to me” link under my name.

This is our team page: HERE    To walk with us, click the red “join our team” link and fill out the registration.

Thanks!

 

 

 

So how’s your ALS?

RT: “So how’s your ALS?”

Me: “ALS is always shitty.”

RT: “But how’s your progression? Is it slow? Did they say?”

*(RT stands for Respiratory Therapist)

I don’t know fully how to explain how I feel about this exchange with an RT in my home this morning, or how to fully explain all the things that are wrong with it. I am lucky to meet and have the caregiving of many exceptional and compassionate healthcare professionals. But the above is an example of a type that I encounter frequently and which I have grown to loathe.

In the beginning it was easy to be forgiving, to overlook unintentional insensitivity, well intended but misguided advice, kind ignorance, and plain human curiosity.

The curiosity bothers me more and more over time, as I begin to see healthcare providers as using their professional position to satisfy their personal curiosity. I am frequently asked, in that authoritative doctor or nurse (or even dentist) voice, how my ALS symptoms started. This is in a context in which is it totally irrelevant and has no bearing on what the provider is seeing me for. I have been at the ER for a migraine, or the dentist for a cleaning, or at one of my children’s healthcare appointments, and I am asked this, again and again. It is not part of their job in that moment, it is just curiosity. I feel there is a subtle abuse of power there, though the individual is often sympathetic and well intentioned. But have any of them ever thought far enough to realize maybe they are causing me pain to satisfy their morbid curiosity? That maybe it’s hard for me to tell my story again and again?

This morning an RT I’ve met only one other time in my life, asked me casually “how my ALS is doing,” and prodded about my disease progression. As if asking how quickly my death approaches is on par with discussing the chance of rain. This is a person whose only job is to periodically check that my non-invasive ventilator is working and that I have enough supplies.

This same RT tends to speak to me in that voice specially reserved for four-year-olds and, apparently, the very infirm.

The nurse who flushes my port once a month did not know ALS was degenerative and ultimately terminal. After several awkward conversations where she was describing “when you’re better…” and “hope you’ve got some strength back next month!” whilst I tried to respond vaguely, I finally had to explain to her that I cannot recover the strength I’ve lost and I will, unfortunately, not get better. This inevitably led to me comforting her, so when my husband or I encounter this with a professional we won’t see regularly we don’t bother explaining. This happens a lot, despite that these are people involved in my care. But they aren’t ALS people. They serve individuals with all different diagnoses, so I don’t blame them for not knowing all about mine. That doesn’t mean I have endless patience though.

Some providers insist on trying to have a friendship with me. Sometimes I just want them to come, do what they need to do, and leave. Keep it professional. I don’t want to be everyone’s friend. Some nurses I “click” with and we do develop a natural friendship, but I have others that I don’t feel that with, and yet they push me hard for personal chat and I find it really invasive. To be fair, I’m that person who hates going to the hairdresser because they do the same thing, so maybe I’m just too antisocial. But when I put out those “I don’t want to talk” vibes and they push on anyway, I feel like they’re again taking advantage of that bit of power they have where I’m the patient and I’m supposed to answer their questions and do as I’m told. I get angry and resentful.

Sometimes I really think ALS just brings out my inner bitch in a big way. I find myself angry at everyone. Feeling powerless makes you want to lash out. But I think I have some legitimate gripes about some of the care providers I interact with. I wish they understood what’s it’s like to be on the patient end of the relationship.

Sleeping Beside my Angel

Reza in bed with a sleeping Daddy.  Unfortunately, since I’m always the one with the camera, there are no pictures of me and him snuggling in bed!

Reza has slept every single night of his nearly 6 years beside at least one, but most usually both, of his parents.  He doesn’t always do much sleeping–I’ve written plenty about that–but when he does sleep, it’s cuddled in our bed.  (In my head I’m hearing Goldsmith crooning I don’t always sleep, but when I do, I prefer to cosleep…)

While I think this has had an incredibly positive affect on Reza, it also has been a profound source of comfort and connection for me too over the years.  He always sleeps between my husband and me.  Occasionally he would roll to my husband’s side, so when my husband came to bed he’d sleep next to me with Reza on the far side.  In my sleep I’d reach for my son and he wasn’t there and I would panic!  So now my husband always moves him into the middle if he’s rolled too far.  It’s hard to explain, but I spent more than three years breastfeeding him through the night beside me, and now it’s been almost another three years just cuddling him.  At this point the association of sleeping next to him and a sense of peace and wellbeing is so strong.  I know he will need his own bed eventually, but I want to savor this special time while it lasts.

Gradually though, ALS has been elbowing itself in between us.  It started with little things.  It’s hard for me to grip the blanket and pull it over Reza and myself.  So he began rolling closer to his Dad, since he knew Dad could pull the blanket over him the way he likes.  My sweet husband solved that by tucking us both in under the blanket together.  Then I started using a splint to keep my fingers from curling at night.  This lost me the ability to use my left hand to rub his back or hold him.

More recently, I began needing to use a non-invasive ventilator (called a BiPAP) during the night to help me breathe while I’m lying down.  You wear a mask with it, and mine is a full face mask.  I’m mostly stuck on my back.  With the mask on it’s very hard to side-lay while wearing it.  This makes it hard to snuggle my little guy.  I also used to love laying my nose gently against his head, inhaling his sweet scent as I slept.  But now I have this big piece of silicon covering my nose and mouth.  I miss side lying with my arm across him, my nose buried in his hair.  But I still get to feel his warmth beside me, and now he reaches for me, holds my wrist gently in his little grip.

We did have one cute, funny thing with the ventilator.  One night, I was laying in bed and having trouble falling asleep.  As my husband and son drifted to sleep beside me, I noticed that both of them had synced their breaths with the ventilator breaths!  It creates a very soothing ambient noise, and it seems no one can help but sync their own breathing to it along with me!

Lately we’ve been discussing bed solutions.  Our mattress is on the floor with no frame.  Originally this was necessary because Reza would fall off a regular bed in his sleep and hurt himself.  But now it’s hard for me to get in and out of because it’s so low.  However I am not able to climb up into and down from regular bed frame heights.  I’m tiny myself, and with my weakness I can’t do it.  So one option is to eventually consider a hospital bed that would be able to go up and down as needed, and we could adjust elevation of my upper body or feet etc as needed for best positioning.  But if I go that route I will have to give up sleeping with my sweet angel, and my amazing husband.  And I don’t think I’m ready for that.

I Love You

If you know Reza in person or have followed my blog at all, you’ll know he loves to climb and can scale just about anything.  He enjoys climbing in our garage and we usually let him roam in there with the interconnecting door open so we can check on him every few minutes.

Yesterday while he was playing in there we suddenly heard panicked cries.  My husband ran in to see what was wrong, but, at first, couldn’t see Reza anywhere.  He followed the sound of the cries to the window, where Reza was hanging by his fingertips from the lower ledge on the outside of the garage!  Apparently the window had been open, and he pushed the screen out and tried to climb down but got scared and stuck.  When we got close enough to help, we realized Reza was crying “I love you, I love you, I love you!”

We reflected afterwards that Reza probably associates those words with being hugged, being held, and feeling safe.  We say it to him over and over in that context of physically enveloping him in our arms and our safety and security.  So when he was hanging there, terrified and needing to be hugged, held, and safe, he cried out “I love you!” as his plea.

I cried a little.  I wonder if he’s internalized the meaning of “I love you” both in that especially literal Autistic way, but also in its abstract sense.

Love this little guy so much.