What’s Left.

Greetings fellow travelers,

I hope that wherever you’re reading this from, you are safe.

I haven’t been safe in awhile.

Yes, I have a roof over my head. (A new, expensive one at that; first year home-ownership can be stressful).

Yes, I have food and water.  (Well, sometimes there’s food – usually the fridge is empty-ish and even when it’s not, I’m not really into eating it.)  This fact alone makes me safer than millions and millions of people.

I am – generally speaking – not in danger.

Except last week.  Last week,  I was in a lot of danger.  And it wasn’t the first time.

It comes as no surprise to anyone following my story that as a “Professional Patient” I spend most of my days balancing doctors appointments and symptom-tracking and medications. To be honest (and you should always be honest, right Justin?), I’ve been doing a truly shitty job managing my illnesses.  It starts simply enough – one bad day.  That bad day leads to two, and by then I’ve decided nothing I could do matters and I let go of the controls.  Sounds healthy, right?

So a couple of weeks ago, as I was juggling my annual OBGYN visit, IUD discussions, a urology referral, a visit to UNC to discuss my constant nausea and further testing, a mammogram, vision testing for new glasses and contacts (and WAY more money than we have), my therapy visits and then 3 or 4 “normal” appointments, I kind of lost my mind.

The thing is, it wasn’t even beyond the scope of normal; that’s a pretty average week in my life.  Where things started to go sideways was in the creeping, slinking, insidious feeling that an MS relapse – or something worse – was coming on.  I’ve described this enough times that I feel we are all comfortable with what this looks like, so I’ll just summarize by saying that at this point in the story I was no longer in control of my motions, thoughts, words or feelings.

When Thommy and I went on our annual wedding anniversary trip in early October, we spent most of our time playing the previously referred to “ER or nah??” game.  I didn’t want to go to an ER out of state (we were in Tennessee) so we just assumed the worst was yet to come and tried to enjoy what we could of the Smokey Mountains.  BUT, because my brain wasn’t working properly, I forgot to pack both my cane AND my handicap placard, so we weren’t able to do much sightseeing or exploring.  In fact, we barely left the condo.  Since we’ve been married for 9 years, and together for 13, we don’t need a lot of special attractions to enjoy a trip; just being in each others’ presence is special enough.

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At the Tennessee Welcome Center

So let’s catch up: we got home, the symptoms got way worse, and on Friday, October 27th, I went again to see my primary care doctor.  He took an X-Ray of my neck first to see if that could explain some of the symptoms.  Luckily, it did a little – I now have 3 herniated discs and something wrong with the curvature of my spine – and had we not had more pressing issues he said we would be discussing physical therapy, cortisone shots and possibly surgery – but since I couldn’t feel my leg or finish a complete sentence, we had bigger problems.

 

He sent me over to the hospital as a direct admit. He assured me they would give me sedatives before the MRI of my brain, thoracic and cervical spine (a 2 hour procedure), but the hospital was experiencing a severe shortage of IV Valium so they gave me Ativan instead, and it did nothing, except possibly make me MORE agitated.  Over the course of my stay they tried 7 IVs.  2 blew.  One nurse cried and I did everything I could to convince her it was me, not her.

It is now Sunday, November 5th and it hurts just to type this.  But what I want to say is important; I was diagnosed as having another MS flare.

After 3 MS medications THIS YEAR ALONE.

After the hell of Ocrevus JUST TWO MONTHS AGO.

The reason MS patients put up with all the bullshit is to STAY OUT of relapses.  I tortured myself all year just to end up here anyway.  And that’s JUST the MS – never mind everything else in my body hatching plans against me.

So.  They prescribe 3 days of IV steroids (WHY, GOD, WHY?), fluids and pain management. Fine. I’m pissed but I can do this.  What’s 3 more days in the hospital?  I am safe.

Except.

Except…

I can’t do it.  I am not safe.

A psychiatrist comes to talk to me on the day of discharge.  “Are you safe at home?”

(Mental checklist: roof, food, check.)

“Yes.”

“OK,” she says, “do you have thoughts of hurting yourself or others?”

Let’s do the easy one first.  Do I want to hurt others? Like this guy – this guy here who SLEPT IN A CHAIR FOR 3 DAYS AND BARELY LEFT MY SIDE AND DECKED OUT OUR ROOM IN PENN STATE STUFF FOR THE GAME DESPITE THE FACT THAT I KEEP YELLING AT HIM AND CRY INCOHERENTLY??  No.  No, I do not want to hurt him.

(Well, I didn’t.  But now that I’m at home, in pain, miserable and riding steroid rage, ummmm…..)

psu

But do I want to hurt myself?

Yes.  I want to find a way to trump the pain I’m in every day, I want to be the one doing the hurting, actively, so I’m no longer passively being injured, I want it to be quiet, I want it to stop, I want it to end.  Please.  Make it all stop.

“Would you allow yourself to be voluntarily committed to our behavior health unit?”

What’s left to hide from? What’s left to be scared of? I’ve seen the worst, I’ve felt the worst, I’ve been in the dark for a long time.

What it feels like she’s asking is, “Do you want to save what’s left of you?”

“Yes.”

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And that’s where another story starts and ends.  The only other time I’ve been hospitalized for mental health issues since Renfrew, and this time it was only 3 days because on the chaotic and teary night of admission I signed my 72 hour release form. (They really should make you wait until morning to do that, but what do I know…)

So basically I asked to leave before I had even fully been processed.

But that’s OK because 3 days in a psych unit is a powerful time.  Every single person you meet changes you forever.  And I want to do justice to that story so we’ll save it for another day.

But what I want you to know now is that on Monday, November 6th, I will start a 6 week intensive partial hospitalization; that means from 9am to 1pm I’ll be in intensive therapy, both group and individual and I’ll meet each week with a psychiatric nurse to continue to adjust my medications and with a psychiatrist to keep this journey moving.  In addition, I can still see my normal therapist once a week, who I’ve been seeing for two years, and who has been remarkable.

There are three other things I want you to know, and they are so important to me, that I’m asking you to really hear the words in your head – and I’m asking you to remember.

1.) I would be dead right now if it wasn’t for Thommy, my mom, a handful of the best friends I actually don’t deserve, and a tribe of “Rhea Team” warriors who pray for me and send me their positive energy and their love and their notes and their gifts and who keep showing up despite the tedious repetition of my illnesses and shortcomings.  I know that I am blessed.  I do not take it for granted.  Please keep reminding me of the good things – please keep your words of love and light coming; it’s my way out of the darkness.

2.) You need to vote better.  Sorry if that’s whiplash but it’s true.  You and me both.  I am getting the most amazing, thorough and continued treatment because of insurance.  There was a time I didn’t have that.  And there were people I met in the hospital who were released before they were stable because of insurance. Cuts to mental health services, Medicare, Medicaid, etc, literally, literally, literally KILL PEOPLE.  I might be one of them. Vote in every election you can for leaders who will protect those services.  I can’t believe this country works that way but here we are.

3.) Mental health stigma needs to end.  And it can start with you.  Stop using the word “crazy” a dozen times a day when it’s not necessary.  That’s the easy one – challenge yourself today and see what happens.  Don’t use diagnoses as adjectives.  OCD, bipolar, schizophrenia, manic/mania, depressed, anorexic/bulimic, PTSD, cutting/cutters/self-harmers … all those things are real life.  They can be nightmares that people may never wake up from.  Some of us will get help and regulate it but we ALL need to stop carrying around the shame of it.  It is not a punchline to your shitty joke.  If someone trusts you enough to share their story with you: listen without judgement.  You don’t have to fix them.  You don’t have to feel their pain to help them through it.  You can hold space with love and respect and allow them to process their emotions freely.  Not everyone is ready to accept help  – it is not your job to lecture them. Memorize the number to the suicide hotline (1-800-273-8255) so that you can provide a resource to someone is crisis. (Obviously, if it’s an emergency, call 911).  But from experience, I can say that I’ve lost track of how many times I’ve had a meltdown on the phone with someone while I told them I couldn’t make it one more day – and the act of simply being heard has kept me here one more day.

One more day.

That’s what’s left.

Or, like we talked about in the hospital, one more minute.  It’s 7:31am right now.  Can I make it until 7:32am? What can bridge those 60 seconds? Breathing? Medication? A phone call?

I know I said I needed you to know 3 things, but I lied, there’s one more:

I am not ashamed.  As someone with complex mental illnesses AND complex physical illnesses, stuffing that all inside and hiding it from the world is what usually gets me into the darkest recesses of my mind and keeps me buried.  As someone with mental illness, I *DO* feel guilty, all the time, for hundreds of things, real and imaginary; but, what I don’t feel guilty about, is sharing this with you.  There is a level of self-loathing I experience that I didn’t even have words for until I was on the psych unit, but my head will not hang one inch lower after posting this and sharing it.  I hope if you read this and you want to talk, you reach out.  I hope if you read this, and you are so inclined, you share it with your circle because there might be someone who needs to read it and know help is out there and they don’t have to feel alone or ashamed.

I’m redefining myself with the pieces of what’s left; and with each new illness and test and hospitalization and med change, etc., I do feel like I lose some of the person I wanted to be.  Or at least the person I thought I was.  But there is so much power in realizing you can create someone new.  And know this: if you’ve had to do this (I mean, REALLY, do this): you are a fucking superhero.  Suit up.  Here’s your cape…

xoxo

Rhea

In Defense of Weakness

As I delve a little into what happened yesterday during my second half infusion of Ocrevus, I want to be very clear that “weakness” is not at all meant to be a taken as derogatory, or a stand-in for failure.  I do not intend “weakness” to bring up feelings of inadequacy or defeat.

Weakness, in this piece, means vulnerability, means softness, means disarmed – and the context of these words are meant to evoke in us the power of our humanness and to speak to the testament that though we are all fragile, that fragility bonds us together and opens up the pathways for empathy.

As I wrote about in my last piece, my decision to start Ocrevus was not an easy one and the long-term side effects were scary and the short-term ones turned out to be terrible.  This all comes with the territory of long-term disease management and medications.  So I won’t re-hash that and I’ll start with yesterday morning.

(Full disclosure, as I’m writing this, I’m currently basking in the warmth of 7.5 mg of Vicodin, 50 mgs of Benadryl, plus the haziness of sheer exhaustion.  Also, my skin is burning at a level best described as “infuriatingly distracting” and I have no feeling in either of my legs, so every once in awhile I’m taken out of writing mode to try to figure out how my laptop is floating in front of me because I can’t see the lump of legs beneath the blanket and so the whole “out of sight, out of mind” comes in to play.)

Knowing that we would have to leave for Duke at 5:30 am on Tuesday morning, I went to bed at 7 pm Monday night; not surprisingly, I woke up at 1:45 am, anxious and pissed.  But I got dressed, combed my hair and took a “Let’s Do This” selfie in an attempt to get myself pumped up.  I was thinking I looked pretty good for 2:30 am, especially since I was fighting a panic attack and couldn’t take anything for it (so there would be no interactions with the pre-medication they give you at the infusion center).

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We headed out right on time, and despite the Tropical Cyclone warnings, there was only a light rain falling.  Thommy and I took the obligatory “WE’RE ON A ROAD TRIP!” photo at the first red light we came to, and then he took an adorable shot of the two of us once I inevitably passed out in the passenger’s seat.

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Durham rush hour traffic was reliably crazy, so we rolled up to Duke Hospital with 15 minutes to park and check-in.  While I nervously waited for them to call my name I couldn’t help but notice the obnoxiously optimistic vending machine taunting me.  Similarly to adding the words “in bed” to the ending of fortune cookies, I sometimes like to add the words “my ass” to the end of inspirational quotes.  In case the image is too small for you to read, let me assist you in recreating what I read in my head yesterday morning as I waited for the IV toxicity:

“The human spirit is stronger than anything that can happen to it … my ass.”

vending

Despite my obsession with quotes and my belief in their ability to empower and embolden us, sometimes the only thing that pulls me along in life is sardonic humor. Apologies to C.C. Scott.

Anyway, the appointment started out great – especially the first three things.  For starters, the scale was broken!! After just getting weighed in at a doctor’s appointment on Monday (yes, I truly do spend most of my life at doctor’s appointments), I was really not looking forward to it on Tuesday.  Most people dislike getting weighed in on those hideous contraptions anyway, but for someone with anorexia it’s an even harder proposition. Sometimes I do the weigh-in backwards, but most times my sadistic side takes over and I can’t avert my eyes.  I’m going to be writing a special post about my upcoming 10 year anniversary from Renfrew and one of the things I’ll be talking about is some ways people with eating disorders engage differently than regular folks with seemingly benign tasks.  For example, on the day before a scheduled weigh-in, I usually dehydrate myself and often times use a diuretic or laxative (despite the fact that I am chronically dehydrated and have diarrhea anywhere between 5-15 times a day).  I also wear as few items of clothing as possible.  This is much easier to accomplish in the South, but regardless of the fact that I am always cold, I usually wear shorts and flip flops to appointments so I can take them off before stepping on the scale.  At the infusion center, none of these preemptive steps are possible because those places are kept at what seems to be “just-below-freezing”, so I’m forced to wear jeans and shoes.  I digress: I didn’t have to get weighed in.

The second good thing was finding out that they try to keep you with the same infusion nurse for sake of continuity of care.  I loved my nurse the first time and I was ecstatic to be back under her care.  The last positive to happen in quick succession was the fact that she was able to get the IV in on the first try.  Last time, it took 3 pokes (plus the delay of waiting for the “IV Team” to show up).  Then, things started to take a turn for the worse.

Despite assurances last time that were going to double ALL my meds to start (including the Benadryl, which is a god-send during these infusions because it either knocks you out or keeps you in a “I Don’t Give a Fuck” haze), I was informed that only the Pepcid and the steroids would be doubled.  That was the first time I wanted to cry in the infusion chair.  I held it in.  I dug in hard, gritted my teeth, focused my energy and willed myself to stay ahead of the thundering rumble of disappointment I could hear building up in the background.  Thommy must have taken a picture at this moment, which I didn’t see until later, but perfectly captured the internal pep-talk.

And then he asked for a picture, grinning.  I tried to smile back.

 

Then, as my nurse administered the normal dose of Benadryl, none of the twilight-like sedation that had blissfully overcome me during the first infusion took hold.  It might as well have been saline.  Again, the tears swelled up from my gut to the edges of my eyes – but I blinked them back down and just let the crashing wave of disappointment and frustration wash over me.  All my senses and emotions were so heightened that it felt more like drowning than washing, but I didn’t want to give up on the day so early in the process.

The day marched on.  Thommy did some work and I mostly stared ahead at the wall, or occasionally at my phone, but mostly I just looked at the IV.  A little blood had started to flow back into the tubing, a hazy mixture of red blood and opaque medicine creating a pink swirl in the line.  I don’t know why it was mesmerizing.  Something about blood leaving my body was calming; it was just the smallest amount, really, but it was beautiful.  It didn’t even scare me that I wished it was coming faster, or that the tubing wasn’t there, or that the earlier moments of “washing disappointment” turned to a wistful hope that the droplets of blood would turn to tiny streams, then currents.  Visions of crimson liquid on pale skin lulled me.  It wasn’t the meds but this vision that acted like the Klonopin I hadn’t been able to take earlier, and my eyes closed.  Thommy must have looked up from his laptop shortly after this and captured with his phone what must have seemed to him like a momentary respite from the struggle and a rare moment of calm.  It was.  But for all the wrong reasons.

***

As we hit the mark in time where I had experienced a reaction during the first infusion, I was ecstatic to realize I wasn’t having one this time.  I stubbornly decided (as one does when they think they can control everything around them) that I was NOT going to have a reaction this time and we were going to get out of there on time, beat the Durham rush hour and be back home after “only” 12 hours.  It was not to be.  30 minutes later when they once again bumped up the infusion rate, I started to get the faintest tingle around my ears and the outline of my face.  Then a little on my neck. I tried not to think about it; I certainly tried not to touch it.  I didn’t want to draw any attention to myself while surrounded my hawk-eye nurses and an even more attentive husband, who for reasons that entirely escape me, seems to actually like looking at my face.  I again tried to convince myself the increasingly hard to ignore burning was simply a matter of psychosomatic manifestation.  No allergic reaction to see here.  Maybe if I pretend to sleep, no one will look at me.

Then I coughed.  Just once.  But Thommy looked up.  I shook my head nonchalantly: “I’m fine, just a tickle, it’s fine.”

Then another cough, deeper this time: “I’m fine,” I laughed, “seriously, go back to work.” Then 3 more in quick succession, harder and rumbling, ones that forced my body upwards in the chair.

Fuck.  Me.

After 2 minutes of “Should We Get the Nurse” ping-pong, he poked is head above the nursing station.  I could hear the mumbling and I shot Thommy the coldest death stare I could muster and like a mother scolding an insubordinate child, I mouthed “SIT. DOWN.”

“Never mind, she’s ok.” Thommy said with a sheepish chuckle.  It was his turn to try to laugh it off.  But it was too late and here she came, arms crossed, smiling.  It wasn’t my nurse (she was on lunch), but one that had remembered me from last time and had come over to say hi when we first got there.  “Good to see you again,” she had said.  She was young and very pretty.   It’s strange, but even after just two visits, they seem like a family to me.

“What’s going on?”

“Nothing,” I laughed, waving my hand in an attempt to shoo off the inevitable.  I try to act like the smartest person in the room when in medical settings, like it simultaneously makes everyone up their own game and also allows me the upper-hand.  I do it because pretending I’m in control is the only way I’ve found to survive all this shit.

I don’t remember exactly who said what, but among the three of us, words like “itching”, “just a little irritation”, “cough”, and “I really am fine,” got tossed around.  No dice.  In quick succession, 3 nurses and the PA who oversees the floor and is probably the sweetest person I’ve ever met in a medical office were standing and sitting around me.  Then I started to fucking cry.  Not sobbing, not hysterically, but a stifled stream of tears finally made their way out of my eyes and down my already red and itching face.  The nurses and Thommy tried to console me, thinking what, I’m not sure.  The darker part of my nature thought maybe they believed I was weak – easily rattled – being a brat.

I doubt anyone actually thought that but those were the assumptions pounding against my skull as I tried to explain that I was only crying because I didn’t want to stop the infusion, I just wanted to get through it like (seemingly) everyone else did and go HOME. I wanted them to understand that my body does not know any other mode than “self-sabotage.” It is a betrayer.  It lies and it breaks and it defies logic.  I wanted them to ignore what they were seeing, go against all ethical and practical guides of medicine and just let me have my reaction in peace and get the fuck out of there.  As I explained that, minus the expletives, the PA sat down next to me and placed her hand on my knee that was huddled up next to me as I did my best to place myself in the fetal position in the chair.  Her eyes were the warmest shade of brown, and empathy and sympathy shot out of them like laser beams set to a better frequency than mine.  Excitedly she said, “we won’t stop like last time!! No, no…” she comforted, “we will just stop the drip while we give you more Benadryl, more Pepcid and some Allegra, and then I promise you we’ll start right back up.”  There were some hesitant, doubting looks on the faces of the nurses surrounding her.  The PA must have noticed that too because she added – “I’ll start it back up myself if I have too.”  I agreed, but kept crying.

They all started shuffling around doing what had to be done and within a few minutes, my own nurse was back.  They explained to her what had happened.  They tried to explain why I was upset.  I started to defend myself, but she stopped me.

“Of course you’re crying.  You’re tough and happy for as long as you can and you do what you have to do and then all it ever takes is one final thing, the straw that breaks the camels back, to put you over.  It’s not pain, you can handle that; it’s just frustration at one more thing not working out the way it should and you just have enough.  You’re ok.”

I cried harder.  She actually fucking got it.  I’ve known her for a total of maybe 18 hours in my life and she completely understood the secret language of my tears in that moment.

They infused more meds and I watched the clock tick.  And then, when my time was up, and every nurse was with another patient, the PA (who works in administration and oversees the floor, and who was wearing high heels, a skirt and a blouse, but who had promised me that this little setback wouldn’t get me off track to go home on time), found gloves and started my drip back up herself.

The state of medical care of this country is currently broken.  I know this because I am a professional patient.  But the level of care I’ve received at my infusion center, and especially at the hands of this PA at that moment, healed so many fractures for me.

I still had well over an hour to go when my nurse left for the day.  She came over to say goodbye and that she’d see me in 6 months.  She said a few things, all so genuinely sweet that I wanted to cry again.  Then she said “it was truly a pleasure being with you today.”  I could only nod.  When she left, Thommy turned and said, “she loves you.”

“Yeah,” I said, thinking about all the times doctors and nurses would fawn over Memere, even as she experienced the worst that hospitals have to offer.  “I learned that from Memere.”

***

In my ongoing commitment to showing how “real” complicated and ongoing illness and disability can be, I allowed Thommy to post a picture he took of me crying to Facebook.  We try to document as much of our lives as possible, and while most people who know me know that I’m incredibly open and honest about what all the colors of life look like, there are lines I try to draw.  I’m struggling with that right now as I’m drafting my Renfrew piece, because despite the trigger warnings and the explicit language I’ll use to shy away people who shouldn’t be looking at it, I know if they’re anything like me they’ll be compelled to do so anyway, and so I haven’t decided if I’ll use pictures to help illustrate what my personal weight and health struggles have looked like over the last 18 or so years.

When we finally got home last night, I kept looking at that picture.  I really had to fight the urge to take it down.  I still think displaying vulnerability, depression, anxiety and self-harm are ways that help me fight against them.  I know not everybody feels that way and I do worry maybe it’s too triggering for people.  And maybe I’m delusional, but I do feel that if someone is battling their own demons in secrecy, and maybe feels like no one else understands, that they might see one of my pictures or posts and realize that weakness does not have to equal defeat or inadequacy or failure.  Sometimes – hell, most times – weakness is permission to feel vulnerable, hurt or broken while simultaneously seeing the strength that all those feelings require.  It is permission to be human, and to let others know that not everything they see or read from people they consider “strong” is the whole story.  Strength requires too much energy sometimes; it needs its’ counterparts to be whole.  When someone tells me I’m strong, I want them to know that, while it’s often misquoted and not used in accordance with the original source material from “A Farewell to Arms”: we are all broken, that’s how the light gets in.

So today, as I sit here, I am bloated from the steroids and terrified about how much worse it’s going to get in the coming weeks. I am in incredible amounts of pain radiating from all over, and both legs are numb.  I am starving, but I won’t eat.  My face is broken out in hives (as are my neck, chest and shoulders), and I am dizzy and nauseous from all the medicines.  I am worried about money because our car just needed $1,100 worth of repairs.  I am feeling like a horrible friend and daughter because there are things I’m supposed to be doing for my friends and family that I just can’t.  I feel like the “World’s Worst Wife” (a title I bestow on myself often) because Thommy is stressed and anxious and I can’t be as attentive or patient as I should be.

I am feeling my humanness today: hard.  I am still crying.  But I’m urged to remind you that while it’s not necessarily fair to feel this way, we are okay.  And if you need to reach out, reach out.  And if you want to share your struggles with social media but worry people might think you’re being “dramatic,” tell that voice to shut up and share what you want.  You have no idea who it might help.  Or how it might help you.

What’s the point of being strong if you can’t define strength on your own terms?

What’s the point of struggling in silence because you’re worried about what other’s might think? People who would turn their backs on you deserve to be walking away.

What do you need today?  Ask yourself – then ask for help if you need it.

If you’re doing OK today – ask someone else what you can do to help them.

Results may vary.  You may make someone’s day.

Or you may save it.

 

In strength and solidarity,

Rhea

 

 

Can Anyone Hear This?

I woke up this morning with a pulse of 125.  This is an uncomfortable anomaly.  This is the steroids saying “Good Morning”.

Two nights in the last week, Thommy and I have sat in bed, with the Omron 7 Series Upper Arm Blood Pressure Monitor between us, and stared at the reading – “78/45, Pulse 52” – and we played one of our favorite games: ‘911 or nah?’

We play this game often.  We’re getting better all the time.  About a week before I was diagnosed with POTS, I passed out in the shower.  This was my first tip-off that something was probably seriously wrong.  After 15 minutes of “discussion,” it was decided I would go to work anyway.  (READ: After lots of exasperated threatening and ultimatums, *I* did what I always do, which is to just do what *I* want to do, because moving forward no matter what was the only way I knew to keep propelling my life forward, knowing deep down that as soon as I gave in to some of these things, I would have to give up everything.)

Then, about a week later it happened again.  Ok, this time I’ll go, I said.  But no 911, we can drive, ok?

But first I need to shave my legs.

I can’t imagine one person reading this, save Thommy, will understand this AT ALL.  But I’ve been to the ER so many times, that I knew if they admitted me, it might be days before I could shave, and the only thing worse than those hospital gowns and socks, is feeling your own prickly, sharp legs hitting each other while you shift endlessly trying to find a comfortable position.  You’re in so much pain.  You are so helpless and there are times when you barely feel human; having the continually growing hair poking me reminds me, in those moments, that I am at once alive but unable to do anything with, or about, that aliveness.  It’s a bizarre mile-marker, and I don’t expect anyone to understand, but unless I am bleeding out on the floor from a severed artery, Thommy knows that I’m going to ask for time to shave and then brush my teeth.  If you can’t be stubborn in the face of ER visits (which have brought literally life-changing diagnoses for me, no less than 3 times) than you aren’t going to be able to handle life when you leave.

And furthermore, I knew, because us hospital-dwellers know this, that if something was wrong with my heart, there was a good possibility my body might start to swell; and if you are a patient prone to swelling, doctors check your ankles to monitor this swelling.  I can withstand any number of awkward, uncomfortable, humiliating, pride-diminishing moments at the hospital – but I draw the line at having to suffer my own stubbly legs, and the unconscious and uncontrollable flinch that will occur every time a doctor, nurse, or aide (or loving husband looking to provide reassurance) tries to touch my unshaven calf. No.  I’m not doing it.

It’s a secret language I’m speaking, I suppose, with no currently available interpreter.  I accept that this seems preposterous and unimportant to most anyone reading.

So anyway, I shaved.  And we went.  And I was diagnosed with POTS.  And I couldn’t stand up without blacking out.  Fuck, sometimes it even happened sitting down.  And so I went out on a short-term disability, which led to a long-term one, which led to a permanent one.  That was the last time I would work.  I haven’t worked since 2015.  And I am losing my mind.

takesomeone
Literally.  This is not just a meme.  This is not temporary.  This is my everyday reality.

 

In the past 12 months, I have endured the electrifying anxiety that comes from researching, deciding-on, starting (and then ultimately stopping) three MS medications.  THREE.  In one year.  First, I tried a monthly infusion called Tysabri, but then quickly developed something called the John Cunningham Virus (JCV).  In people with suppressed immune systems, this can (and does) lead to something called Progressive Multifocal Leukoencephalopathy, or PML.  People can (and do) die from this.  So MS patients receiving Tysabri are monitored every 3 months or so for their levels; it usually takes about two YEARS of monthly infusions before patients become JCV positive.  I became wildly infected (like, an exaggerated titre level, laughable, almost), after only two infusions.  After all the trepidation and suspension of “worst-case-scenario” imaginings, my body only lasted two months.

FUCK.

tysabri

Then, despite my strong hesitation and vocalized resistance, my local MS neurologist switched me to Aubagio which is a pill you take daily.  Since I don’t have a large intestine, and food, liquids and pills all fly out of me at warp-speed (you’re welcome), causing any number of malabsorption issues, I didn’t think this was a good idea.  Plus it can cause nausea, headaches, cramps, diarrhea, vomiting… if those sound familiar to you it may be because you’ve heard me complain on a fairly regular basis of having all of those symptoms anyway.  It also causes your hair to fall out.

But OK, at this point, I felt like the MS was winning, so I agreed to start it.  I made an appointment at my salon and cut off most of my hair thinking I could game the system. There – take that vanity.  Let’s do this. (I cried when I got home, and then again the next day.)

The month I was on Aubagio was a nightmare hellscape.  Imagine a 24 hour flu that also causes you to suffer periodic amnesia and not know what day, time or month it is.  I wouldn’t leave my bed for 3-4 day stretches.  If the hair had miraculously stopped growing on my legs, I don’t know that I would have showered that entire month.  I have Cottenelle wet wipes, I thought. I have dry shampoo!  Fuck standing, just leave me to here to waste away.  Then all of a sudden, as I tried in vain to find a comfortable resting position, one leg would hit the other and I would snap back to reality, cringe at the unbearableness of my own body, and shower.  Then I would, quite literally, collapse back into bed for 3-4 more days.

By the time we got to Duke and my new neurologist, about 35 days after starting Aubagio, I was ready to give up on everything and just ask for my name to be placed on some kind of Stem Cell Transplant waiting list, or start chemo, or do whatever he wanted me to do as long as it didn’t involve swallowing one more pill.  When he said I could quit Aubagio, it felt like a stay of execution.  I left this appointment with a “pick your poison” bouquet of stat sheets on 3 different infusions I could try.  All, obviously, with very serious side effects, including Jackpot Winners like kidney failure, hepatitis, cirrhosis, thyroid disease, melanoma and breast cancer.

I choose the one more likely to cause breast cancer.

I did a detox to rid myself of the Aubagio and that was even worse than the previous month.  Despite the bottom rising up to meet me, I experienced one of the rarest things I had in 2 years: a night of energy, joy and no pain.  Thommy and I went to a lighthouse on Oak Island, and to Caswell Beach. It was everything:

beach

And finally, on August 14th, we started the journey of Ocrevus and Infusion #1.  We left the house at 6:30 am, and got back home around 9 pm.  The 100mg of IV Bendadryl, plus the allergic reaction, have made the details of the day just a sketch; another day in this nightmare that I wish I could say started in 2009 with my MS diagnosis.  But really, it started when I was maybe 2 months old when I first started displaying symptoms of Hirschprung Disease.  So I can safely say this is all I know and nothing I ever hoped for, obviously; it is barely something I can still imagine is happening, even as it’s happening.  I don’t want it anymore.  And the crazy part is – I was the lucky one that day.  The hours passed by in blinks, and even though I was the one who had to get stuck 3 times as they tried to find a spot for the IV, and even though it was me pumped full of steroids and a bag with a toxic sticker on it, Thommy was the one that sat in a bullshit-excuse of a chair for that ENTIRE time.  No drugs.  No warm blanket.  Fuck it babe, I don’t want it for your anymore either.

But more than all of that lately, I can’t stop thinking of the rapidly expanding schism between me and every person I know and love.  This is obviously, obviously, not their fault nor their problem.  What it is, what it’s always been, is this race that I’m running to try to keep up with LIFE (my life, their lives, our lives) while existing almost entirely in an isolated dimension of a life suspended.  There is no mooring to tie myself to, nothing to define myself other than symptoms, disease management, medications, side-effects…

How do you speak that language and still talk to people.  If it wasn’t something I was actively experiencing every minute, of every day, I’m sure there would be a way, because  I’m constantly screaming to myself, “YOU ARE MORE THAN YOUR DISEASE(S).”

Well, I know that.  Truly, I do.  But that’s also kind of a lie I like to tell myself.  Because at any given moment, whether I’m sitting in a cloud of confusion that makes my brain feel like it’s on fire as it tries to decipher what the person I’m talking to is saying to me, or whether I’m focusing on various focal points to keep myself oriented as I stand so that the vertigo doesn’t overcome me, or stuffing down the near-constant sensation of dry-heaving so that I don’t throw up in public, or willing myself, literally conjuring all the cells in my body to communicate with each other so that I can stand for 5 minutes while I talk to someone I’ve stumbled across in public, I am actually these diseases.  It vibrates through my body like a tuning-fork and it never, ever stops.  It is a body electric, and it never shuts off.

Despite what people may see when they look at me, I do not ever feel like a body of blood and muscle and bone.  Nothing in me pumps, flexes or supports.  I am more Jell-O than I am human (or just plain gelatin, depending on my hydration level).

And so when I talk to people, or when I try, to there is this voice somewhere inside that ricochets as I try to swat it away; it’s constantly asking “could this person you’re speaking to be you… could they live like this?” …

I try to make it stop but it’s constantly growing louder.  Could this person, this physical specimen in front of me, with undoubtedly all their own problems and diseases and anxieties and sorrows and pains, could they lose their job tomorrow and turn into a human shaped heap of Jell-O and still get up everyday to a life shattered down around them? And could they pick up those pieces and build a new life?  Can they even comprehend what you’re wondering?  And when I get to my penultimate question, my heart skips one of its tiny, faint beats: Have they ever had to do it before???

Because in that moment, my brain and my heart, that are always asking and searching, wonder one last thing:

Can they show me how?

***

(Note: as I typed this in a haze of frustration and fear, I’ve been watching MSNBC and it’s coverage of Hurricane Harvey and the potential devastation about to befall parts Texas.  I think back to Katrina and how so many people looking to escape it’s path were evacuated to Houston, which is now staring down the barrel of another gun.  And I think of Yemen (if you don’t know about one of the worst humanitarian crises ever that is decimating that country, you should educate yourself and then do whatever it is you do in the face of such suffering, whether it’s monetary or verbal communication between you and your god).  And I think of Heather Heyer’s family.  And I know, as I’ve always known and always said, that suffering is happening on scales NONE of us reading can understand; just as I can’t understand evacuating my home under the threat of 30 inches of rain to possibly never return, or losing a child to cholera, or having a daughter killed by a Nazi.  I know an untold number of us are forced at least once in our life to lose everything and build it back up anew.  And again I ask, HOW?  I really need to know.)