If you have never had the experience of calling a specialty pharmacy to beg for your grossly overpriced medication to be shipped your way in an oversized styrofoam box surrounded by ice compresses and warning labels and wasteful packaging, consider yourself pharmaceutically blessed.
My mom passed this responsibility onto me in December, when she helped me get my first three months of Humira ordered. I cannot explain in words how draining I found the whole over-the-phone process to be. My dogs were barking, my family was chatting, I was repeating my birthday and address a million times, everything seemed to require an extended period of being placed on hold, and there were objectively way too many steps to go through. I generally consider myself to be a fairly patient person when it comes to detached interpersonal interactions of this sort; the closest thing I ever have to road rage is widening my eyes and saying “Um,” when another driver merges dangerously or flies through a red light. But it was not the pharmaceutical representative on the other end of the line bothering me so much as the screwed up system that dictates that I spend a solid chunk of precious time doing this on a regular basis. I cannot believe that my mother has had to put up with this for approximately seven years. Please observe a moment of silence for the many hours of life she has had to miss just to ensure that I have a chance at semi-normal joints.
|Shout out to my wonderful friend Alana! She is a blackberry |
skeptic but otherwise a 10/10 friend. A couple of days ago I was
running on only 3 hours of sleep, and struggling to hold down/refusing
any food due to hip pain and nausea. By evening these problems
caught up to me and I was borderline delirious. Right before this
picture was taken, she leaned over and casually but seriously asked me,
“How are you doing? How are you really? Tell me the truth.”
This process needs Jesus, I thought only half-jokingly when considering the many tribulations required just to obtain a medication that I am not convinced is doing anything for me. When I found myself with an extra hour before a meeting about a week ago, on a good day in which I was feeling unusually confident in my ability to function as a human being, I knew it was the most ideal time to get around to ordering my next doses. I thought of the perfect place to make the dreaded call: a church.
I expected the phone call to take approximately ten minutes, and I brought all of my homework into the chapel with me because I anticipated having empty time in between ordering my medication and heading off to my next meeting. The phone call(s!) ended up taking an hour, which included moments of tearing up about an enormous copay, the amount of which I was not prepared to hear revealed so casually and bluntly over the phone, tearing up about administrative mistakes, which I did not feel equipped to directly confront, and tearing up about a prescription which, for a hot minute, was completely untraceable in the company’s database. There is no need to go into more detail – you get the point here.
My saving grace was Amanda*, a pharmaceutical representative who committed herself to figuring out all of the obstacles we encountered while acknowledging how overwhelmed I was and encouraging me along the way. Her voice was chipper but it was easy to tell that she was genuine, and she allowed for long pauses in between my statements and hers, making space for the heaviness of the conversation as it bore down on me even in the comfort of the chapel. “Rachel, we’ll figure this out,” she kindly reassured me as she tried new ways of searching through the system, “I promise.” I thought of how few people in the health care systems brave those final words, of how even friends are sometimes hesitant to step into a territory of promises that can feel binding and constrictive. Amanda was courageous. I liked her already.
Still, I was not prepared to place all of my trust in her, and towards the beginning of our conversation I feared that she might say that she was very sorry but she had done everything she could and it was just not working. Please don’t hang up on me, I prayed. My dignity is the most frequent casualty of my chronic illness, and I was expecting to have to sacrifice all of it by admitting to Amanda, I don’t know who to call next. In all honesty, I probably would have just called my mom, who is a pharmacist and is quite good at finding solutions to these sorts of frustrating predicaments when my desperation eventually rises above my idolization of independence. Or perhaps I would have called a New Orleans friend and fellow public health major, to vent for a moment about how capitalistic and unjust our entire health care system is and how much I want to be a part of changing it but how very tired I am. Maybe I would have just kept hugging my knees to my chest, sitting in the exact position that my physical therapist has told me is the worst for the arthritis in my hips, waiting to see if my phone would ring and someone on the other end would excitedly reveal, “You won’t believe it! We found the prescription and the order and your Humira is on its way to you!”
I don’t know who to call next. This sentence fluttered around my mind while I repeated helplessly to Amanda, “No, I’m sorry, I don’t know,” as she continued her persistent investigation of why shipping a refill to me was becoming such an impossible process, asking specific questions based on information I did not have access to and could not easily obtain.
As I was sitting in the chapel, praying that Amanda would stay committed to problem-solving despite my lack of suggestions regarding what she should try next, I thought of all of my friends who have been put in her exact same position, minus the professional customer service component, during my health struggles. It is so hard to ask for help, and sometimes when my friends offer to be of assistance or ask me how I am doing I find myself saying to them the exact same phrases I was repeating to Amanda: “No, I’m sorry, I don’t know.” Sometimes these phrases spill out in rhythmic sequence and sometimes I disconnect them from one another. I thought of how many of my friends have swooped in and stayed with me despite my own lack of helpfulness, and despite not being compensated or professionally rewarded in any way for their loving concern. I thought of poor Amanda, who probably just wanted an easy Thursday afternoon with simple customers and simple cases and simple refills and definitely no tears. Amanda probably did not imagine her evening being occupied by a weepy soul with a 1999 birth year who was shakily reading off payment numbers while making the largest purchase of her life thus far.
I feel like a thunderstorm of complicated hovers above me, showering down on unsuspecting friends and medical professionals, some of whom are not carrying umbrellas with them and many of whom have never even seen the forecast. My closest friends and family recognize particularly stormy days through the tiniest of observations; it is actually quite impressive, even though it sometimes startles me a bit. They notice details such as the paleness of my skin, or how much I am bundling up, or how I am walking or sitting or holding objects, while strangers and acquaintances simply see a healthy girl living a healthy life. In some ways, the invisibility of my thunderstorm is protective and allows me to live a sort of double-life that I admittedly capitalize on when and where I can. Sometimes, the invisibility of the havoc of my life makes it the most isolated storm on the weather radar. I am always grateful for people like Amanda who are willing to wiggle into worn-out rainboots and splash right in, with or without advance notice.
I don’t know who to call next. I am lucky that I almost always have a person to call next, but I do not always know who that person is. I find myself, in my most vulnerable moments, trying to identify who might be able to help or who might be willing to just be. I try to remember who has made me promise to reach out to them if I need something. I try to make quick judgments regarding the practical sincerity of those comments. I try to predict whether my falling apart will cause unbearable discomfort for whomever I burden with the request to bear witness to my storm. I try to determine if I will be granted permission to allow my generally happy soul to slip down into somber communion with my generally aching body for just a moment, and whether the person I call will be willing to sink down into that unsheltered place with me or will instead choose to demand false positivity from me.
Trying to make predictions during high-pain moments drains a lot of my very limited energy supply. The process of deciding who to reach out to next requires a lot of thought. Sometimes, when I really cannot do something alone despite repeated attempts to pull myself together, I am left with no choice but to make a choice. I have found that the more I let go of the ridiculous notion that I can always rely on myself, the more people I find to trust. They show up every time I need them, bringing with them hilarious anecdotes and the best gossip and inappropriate jokes and outstretched arms and their own tragedies weighing heavily on their hearts and hands willing to hold mine and say, “You are not alone. I promise.”
These swooping, staying saints come in the form of professors who create subtle hand signals with you so that you can let them know if you are urgently unwell or need help, and they show up in friendly dogs that wander around campus with slobbery smiles and the warmest of hearts, and they present themselves as cashiers who say, “I hope tomorrow is better,” when they hand you a bottle of Tylenol and give you the discount for a membership you do not have. They make themselves known as church members who call “just to check in” even though they saw you merely one day ago because they remember that your Mondays are horrible, and they appear in college students who email you class notes and offer to replicate the lecture in their best professor voice, and they emerge as phlebotomists who walk all over the clinic to find the pink tape to wrap over your punctured vein just so it will match your outfit.
I don’t know who to call next. As I clutched the phone, clinging onto Amanda’s promise, this sentence broke my heart, a stark contrast against the peppy tune of the hold music blasting through the speaker. I was already in tears at this point (if you heard the copay amount, you would be, too), but I knew that if I was forced by Amanda’s giving up on me to say this delicate sentence out loud I would lose my composure entirely. Her voice was full of unwavering compassion, which made the process so much easier but also so much more difficult. If Amanda gave up I could not blame the failure on her inability or lack of tenacity. If she gave up, then what?
After the problem was finally identified and solved, Amanda and I cry-laughed together about a more minor detail, the fact that November only has thirty days instead of thirty one (in my experience, anything is funny once you are sad enough), and I offered my sincerest thanks before hanging up the phone. I normally try to tone down my unreasonable level of mushiness
a bit, because I am keenly aware that the rest of the world does not always exist in my same state of sappy fragility and I try not to be too imposing, but I am pretty sure that I offered Amanda a full sixty seconds of unreserved compliments. After you spend an hour trying to figure out a pharmaceutical shipment, you realize that life really is too short and you might as well say whatever it is that may pull someone through another minute, day, or month.
Once I hung up, the chatter and horrid hold music that had been pressed up against my ear disappeared, and I noticed that most of my phone battery had vanished in the process as well. I was relieved that Amanda had finally figured out the company’s error. I was horrified by the process. I was exasperated from nervous tension. I was thankful to be in a chapel.
I wiped a couple of tears away and pulled myself together. I heard muffled voices through the windows and the comforting yet somewhat disconcerting hum that all old buildings share, the burdensome song of aged wood and stone that have borne witness to weddings, memorial services, and teenagers crying during phone calls with their specialty pharmacies. I only had ten minutes before my next meeting. My hour of productivity had turned into an hour of trying to figure out how I would convince Amanda that I was worth just one more try. “I’m an undergrad,” I admitted at one point, beginning to explain why I needed a New Orleans address linked to my account to be permanently removed. What I secretly hoped she heard was, I am young. I am trying. I am learning to be a productive member of society. I can’t do this by myself.
I wish none of us ever had to wonder if we are worth the time of a pharmaceutical representative, or of God, or of a friend. But there I was, trying to increase my own human value by proving that I was still malleable, reasoning that if she thought that I was still soft enough to be built up or destroyed by the world then she might be a little less likely to abruptly end an unresolved call or to withdraw from the crucial role she was playing during this hour of my life. You may remember my recent post “Very Funny, God”
in which I described going through a similar process with a different pharmaceutical company and another complex prescription.
I don’t know who to call next. Perhaps none of us do. But sometimes we dial the number or send the text or type out the email anyway. Sometimes we do not even know what we are asking for, or we do not know why we need what we need. I think those are some of our bravest moments, even when they feel humiliating or uncomfortable or terrifying or all of the above. “It feels like we are finally meeting,” I remember admitting to a friend a few years ago when she opened up to me about a difficult topic after many months of close friendship. I could tell that she was cautiously permitting me to dip my toe into a puddle that had been pooling up for years under her own thunderstorm, and I was thankful for her small but courageous allowance. Everything was different after that. Everything was better.
Considering that the dramatic pharmaceutical company phone call took place in a chapel, I felt slightly obligated to address God for a moment before heading out. “Thank you for Amanda,” I prayed, staring into yellow walls that somehow always manage to make me feel like I am being simultaneously stalked by a thunderstorm and chased by brighter days. “Please let good things happen to her.” I scolded myself even before I finished my request. I do not believe in God the fairy godmother (although I am all for God having a wand and a pink satin bow). I tried to think of better theology to accompany my gratitude and well wishes, but then I gave up. I like to think that God does not expect too much of people with tear-stained foundation, five percent phone battery, and runny noses. “Good things for Amanda,” I prayed once again, a little more assertively due to my own acceptance of what a mess I was. I paused and became a bit gentler, embracing the steadiness of my thunderstorm’s rain rather than the shock value of its lightning, “And perhaps that she might have a person to call next when the bad things happen anyway.”
*Name has been changed for privacy, but I did email in compliments to this employee’s company using her real name.
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