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).
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.
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.”
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.
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,