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.

Advertisements

Sleeping Beside my Angel

0211180718
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…)

2mt45u

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.

How to Die

My entire adult life to-date, when I approached a new life stage that I was unsure of, I would find books to advise and guide me through it.  Often, I sought out multiple perspectives on the matter that allowed me to find my way.  Books on marriage, pregnancy, breastfeeding, parenting, and autism still scatter throughout our bookshelves.  So naturally, as I contemplate my own death in terms of my ALS diagnosis, I have been looking for books on how to die.  How do I make the most of whatever time I have left while simultaneously coping with the grief and fear that accompany this process?  How do I find spiritual peace in coming to terms with my end?  How do I manage my time, now that it has become so definitively finite?  Sometimes so many days and weeks pass in mundane every-day-life activities and I begin to feel terribly anxious that I am just wasting time that I cannot afford to waste.  Yet, it is simply not possible to fill all my days with extraordinary experiences.  The questions go on and on, and I felt certain there must be guide books out there- books on how to die.  Unlike marriage or motherhood, death is a certainty for absolutely every single one of us.  So surely, I thought, there must be many books on this subject.  But I couldn’t find a single one.  Not one.

There are related books– books for those we leave behind- on how to cope with a loved one dying.  There are memoirs by those who are diagnosed with terminal illnesses.  There are books on chronic illness, and books on making medical decisions when faced with a terminal diagnosis.  But I could not find any books specifically on how to die in the non-medical sense.

At first I thought it was because no one has died and come back to write a how-to guide for us.  But then I realized that made no sense.  Most pregnancy books are written by doctors not mothers, most parenting books are written by psychologists or other “experts” not parents, and so on.  The reason professionals tend to write these books is because they have seen hundreds of people go through whatever it is they are writing about, whereas those of us who have been through it ourselves only really have our one particular experience to draw from.  So why hasn’t a doctor or therapist or social worker who has watched hundreds of patients go through their deaths written a book to help guide those of us newly on this final journey?

While it’s in the form of a memoir, I did find a book that I thought would offer me some insight, called The Bright Hour by Nina Riggs.  I think it’s particularly relevant since she was also a mother of young children when she received her terminal diagnosis.  I’m going to start with that and see if it is helpful for me.  But I find it strange and rather culturally telling that there are not really books out there on how to die.

Falls

I use a wheelchair part-time right now.  Which basically means if we are going to be somewhere where I have to stay on my feet for more than 10 minutes I use the wheelchair.  I sometimes feel embarrassed knowing people have seen me walk, but have also seen me in my wheelchair.  I wonder if they think I’m a fraud or something.  Part of the reason I use the wheelchair is because I don’t have the stamina or muscle strength to walk for very long.  But another big part of the reason is falls.

For a lot of people with ALS (hereafter I’ll use the acronym PALS), falls are the first symptom of this disease.  The majority of PALS are limb-onset, and of those, it is more common to start in the legs/feet.  I am bulbar onset, meaning it started in my speech/swallow region.  When I was first diagnosed my legs were totally fine to walk and run.  As the disease has progressed it has slowly been making it’s way down to my legs.  Over the past few months I’ve started having falls.  The problem with falls for PALS is that we have weakness in many parts of our body and that often means that we are unable to maneuver ourselves mid-fall.  It’s more of a rag-doll fall, zero control.  This is so hard to describe to someone who hasn’t experienced it.  Suffice to say, you have no idea how skilled you are at falling until that skill is removed.

I had a fall the other afternoon.  My head smacked against something and opened a small wound that bled like crazy and scared my husband!  Luckily, despite all the blood, it did not need stitches so I am recovering in the comfort of my own home.  Falling is dangerous for PALS, and it’s a big reason to start using the wheelchair, or another mobility aide if one is deemed more appropriate.  Not only are falls dangerous in terms of potential for acute injury, but, for reasons not entirely clear, falls seem to speed up disease progression in PALS.  And that is the absolute worst thing for us.

So the next time you see someone in and out of a wheelchair keep in mind there are many people with all different disabilities who legitimately need a wheelchair but can also sometimes walk.

But in this moment..

A few weeks ago I wrote a post that I titled Everything is Not Okay.  I wrote about my deep fears and anxieties about what is happening to me, and about death.  I wrote about my kids and how this affects them.  I wrote about the day-to-day struggles.  I wrote about choking and laryngospasm episodes where I feel like I’m suffocating to death.  Those moments of thinking “I’m really going to die right here at the dinner table in front of my children,” and the trauma that leaves on my psyche afterward.  I got a lot off my chest, which was good, but I couldn’t bring myself to publish the post.  It sits in my draft pile and it will maybe get deleted, or maybe just sit there unpublished like a private diary entry.

So no, everything is not ok.  Even though when asked I always say “we’re ok,” “we’re fine.”  In general I’m objectively not okay.  I have a degenerative terminal disease.  So no, everything is not okay.  BUT.  But..  But in this moment, I am okay.  Okay enough to be here writing to all of you.  Okay enough to share some things, and keep others to myself.  Okay enough to smile at the birds outside my window.

My experience with the unpublished post made me realize I need to share more.  Not everything- I want to keep my darkest most vulnerable stuff to myself.  But I think if I explained some of the things I experience on a regular basis it would both inform others and help me feel less isolated.  So stay tuned.  I’m going to dedicate the next several posts to these topics.

Colliding Worlds

Sometimes my son’s disability and mine meet in a strange and gravely beautiful way.  I hear him vocalize and I think my sweet boy is gaining his voice while I am losing mine.  There is something poetic about it.  I know rationally that the two events have nothing to do with one another.  But I would gladly give him my voice, go silent forever so that he could speak.  Sometimes it feels like that’s what’s happening.  A precious exchange.  Perhaps that is just a notion my psyche has conjured to protect itself from the horrors that await me with this disease.  If I can fantasize some purpose to my loss, some meaning to it, it won’t frighten me so terribly.

I cannot pick my boy up anymore.  It’s been months now that I cannot lift him.  R does not use any functional speech but communicates in a secret body language with us.  He grabs our arms and places them around his hips, pulls and lifts on his toes in a silent but clear request to be picked up.  When he asks me to hold him I call my husband, and my husband lifts his weight while I hold him in my arms in a pantomime of how I would hold him before I got sick.  I have often wondered if he realizes I can’t lift him, or if he thinks we are just behaving strangely.

A few days ago I sat on the grass watching him play with his dad.  He suddenly ran to me, pulled me to my feet, and positioned me as if to say “don’t move.”  He then ran to his dad, hand led him to me, and then requested I lift him while placing his dad’s hand on himself from behind.  It was clear he did indeed understand that we needed dad’s help for me to hold him.  He effortlessly puppeteered us into position for me to pick him up with my husband lifting his weight.  We did, and he lay his head on my shoulder and melted into me.  The intensity of my emotions hit me like a ton of bricks.  I had forgotten how it felt to truly feel the weight of his form against me, his body soft and warm, the smell of his hair and skin.  We’ve done this before but never so absolutely.  This time he gave himself completely to our strange hug and it felt like before, like when I could truly stand and hold him in my arms.  He lifted his head from my shoulder and stared deeply into my eyes while clutching my shirt in his little fist.  This kind of eye contact is so rare and when I get it from him it feels like the most precious priceless gift.  Like the clouds have parted and we are bathed in warm angelic light for a few unearthly moments.

Sometimes I worry that R might lose interest in me as my disease progresses.  That if I can’t speak to him at all, if I can’t use my hands and arms to soothe and tickle and hug and hold him, that he will find he no longer needs me.  But moments like R’s request to be held soothe my fears.  I will always be his mother, and our bond can survive this, it can.

Identity and Learning How to Be [Sick?]

Our identities are not fixed entities.  They are living, changing, faceted.  I visualize my identity as a word cloud (if you’re not sure what that is see some examples here).  More prominent aspects of my identity would be in large bold print, with smaller facets in smaller print.  What’s more or less prominent changes throughout my life.  Some facets of my identity are lost or discarded altogether, while new ones come into play.

I remember when “mother” became the most prominent aspect of my identity.  And alongside “mother” would have been slightly smaller but still prominent labels such as “breastfeeding” and “attachment parenting.”  Then one day “autism” became one of the biggest words on my imaginary identity cloud.  For the first two years after R was diagnosed, autism ruled so much of my thoughts and daily life.  Our schedule revolved around therapies and doctors and specialists.  Our son barely slept which meant we barely slept.  A lot of things in our household changed to accommodate his needs.  But gradually we got into a good rhythm.  We learned how to make our house child-proofed and autism-friendly.  Our son got the right blend of meds to sleep a six hour block.  He started school and had a great routine.  Suddenly, I had 3 kids in school all day.  Stay-at-home-mom no longer seemed like a prominent component of my identity.  While autism will always be a big part of our lives, it no longer seemed like this huge deal.  It was just our family’s normal, just life, and so it faded smaller in my identity cloud.

Around this time I remember feeling like I wasn’t sure who I was supposed to be anymore.  I’d had given so much to motherhood, but now my kids were growing, needing less from me in some ways.  It wasn’t a huge identity crisis, just this realization that I now had 6 hours per day to myself with no mouths to feed, diapers to change, or shoes to tie.  I decided to go back to school.  I realized with mounting excitement that I could actually build a career, one that I enjoy and find fulfilling.  I saw myself in the future doing part time work in a field I was passionate about.

So I went back to school full time to study social work with an emphasis on disability.  Suddenly, “student” was back on my identity cloud.  It wasn’t easy fitting school into my life as the parent who acted as primary caregiver while my husband worked and had a lengthy daily commute.  We ordered a lot of takeout, and the housework, normally more my responsibility, took a bit of a dive.  But I loved it, and I finished all my classes the first semester with a 4.0.  I was in the middle of my 2nd semester, with an acceptance letter and scholarship offer for the social work program I had wanted, when my ALS symptoms became troubling enough to start sending me from doctor to doctor.  A few weeks later I was diagnosed with ALS.  It changed everything.

When someone tells you that you may only have a few years left to live you have to decide how you want to spend the time you have left.  As much as I was enjoying school I realized this was no longer the path for me.  For one, things like typing had grown much more difficult due to my weak hands.  Then there were other logistics to consider- I would be driving 30-40 minutes to campus, but how much longer would I be able to drive independently?  As an aside, at this present time I no longer drive unless it’s an emergency and a very short distance.  I also thought about how working wouldn’t be possible.  And even if it was- even if school and work were all possible with the right supports- was that how I wanted to spend the time I have?  I decided I would rather focus on spending time with my family and doing things I enjoy while I can still do them.  So I withdrew from school and we booked a trip to Yellowstone.

It’s been almost a year since I was diagnosed.  My ALS progression has been quite slow so far, compared to a lot of PALS (people with ALS).  But I’ve still lost a lot compared to the old me.  I cannot write legibly, zip up my jacket, button my jeans.  I can’t clip my nails, pluck my eyebrows, or shave my legs.  I have trouble brushing my teeth without stabbing myself with the toothbrush because my fine motor control sucks.  As previously noted I don’t drive anymore.  My speech is altered, my gait is altered.  I have a feeding tube, and while I can still eat by mouth I have given up some foods and must be vigilant to avoid choking.  I drool at times while eating, and food gets stuck in the sides of my mouth because my tongue is too weak to push it back to where I could chew/swallow it.  I was never a tidy eater, but I in the past I considered my slightly messy, overly-exuberant eating style to be endearing, cute even (that’s what I told myself anyway).  But there is no longer anything endearing about how I eat.  It’s just embarrassing now.

In the wake of these changes I find myself sinking into a depression that centers around a feeling of identity crisis.  I’m not a student anymore.  And while I’m obviously still a mother and spouse, so much of what I considered to make up those parts of my identity have been stripped away.  I can no longer drive my children to activities, appointments, or simply to the park.  There is not a lot of housework or food preparation I can do.  And most painful of all, I can no longer even be home alone with my Autistic child because that would jeopardize his safety.  I am not strong enough to pick him up or lead him by the hand.  If he climbs somewhere unsafe I couldn’t get him down.  If he managed to bolt out the door I couldn’t catch him to bring him safely home.  I’m not strong enough to change his diapers because at 5 years old, his legs and bottom are too heavy for me to lift during a diaper change.  Nor am I strong enough to hold him in place when he resists being changed.  He needs an able-bodied adult with him at all times and that’s not me anymore.

My husband works from home as much as he can, and when he can’t, he still makes it home early enough to be there when R gets home at 4pm.  He waits to leave for work until R’s bus has picked him up (at 8:55am), even though this will result in a worse commute for him and less time at work to do work.  He makes all our meals, does most of the housework, does all the shopping.  He takes the kids to their appointments and activities.  Everything that I once did, now he does.  Sometimes I can see and hear how stressed he is.  Afternoons when R is struggling behaviorally, and the older two are bickering, and there’s dinner to be prepared and messes to be dealt with.  And I feel so guilty.  I feel so lazy and useless.  I sometimes try to help and end up making it worse.  For example trying to load the dishwasher but dropping the first glass I pick up because it’s too heavy.  It shatters all over the floor and now my husband has to sweep up glass on top of everything else.

I realized the other day that I don’t know who to be or how to be anymore.  How to be a sick person?  Or just how to be this version of me.  The disabled me.  Maybe it’s about that qualifier, disabled.  I used to be a mother, but now I’m a disabled mother.  And that’s something new I have to learn how to be.  A disabled mother, a disabled spouse, a disabled bibliophile, a disabled hiker and nature enthusiast.  I haven’t figured it out yet.  How to glue the pieces of my identity back together, or reshape them into something I can be inside this failing body.

I don’t even know what kind of sick person to be.  A brave one? (I’m terrified.)  A defiant one?  A fighter?  An angry sick person, or a sweet, gracious, compliant sick person?  None of them feel authentic.  I see other PALS blog pictures of themselves skiing mount such and such with adaptive equipment captioning something like “ALS can’t stop me!”  And here I am feeling like I’ve already let ALS stop me from…everything.  I’m too tired to be inspiring.  I’m not brave.  I just do what I am forced to do because of my situation and that is not the same thing as being brave.

I wish I had a deeply wise ending for this post that would pull it all together with some kind of personal epiphany.  I don’t.  It ends here.  Because I haven’t figured any of this out yet.  But I’m trying.