Back when we lived on Bromley road in the apartment that holds our happiest memories, we had a stack of vocabulary cards that one could use to study for the GRE. Since neither of us were studying for the GRE, J and I decided we would choose just one card per week, post it on the fridge and incorporate the word into our lives as much as possible. Like many of our ideas, this one lasted exactly one week. The word we chose on that first and last day of our new tradition was Nadir.
na·dir
/ˈnādər,ˈnādir/
noun
1. the lowest point in the fortunes of a person or organization.”they had reached the nadir of their sufferings”
synonyms:
the lowest point, the all-time low, the lowest level, low-water mark, the bottom, as low as one can get, rock-bottom, the depths
I’d never heard that word before but we often used it, mostly when being dramatic about a bad day we’d had at work or when we’d been fed a terrible meal. “The dessert was the nadir of the evening,” we’d say light heartedly. To be honest, the moment we began having true Nadirs, we stopped claiming them.
The updates on here have dissipated, we realize, and that’s mostly because I haven’t wanted to be honest about how bad things have been. The diarrhea didn’t stop when we left Pittsburgh. In fact, it didn’t stop until two days ago. I was house bound every day, all day for 7 weeks- afraid to leave for more than a short walk or a quick errand to a place where I knew a clean bathroom would be should an emergency arise. I’ve had to cancel on dates with friends, dates with Jordan have been off the table, and even sharing meals with him at home – our greatest joy- wasn’t possible. I subsisted on rice, toast, bone broth, plain pasta, and maybe apple sauce when I was feeling wild. Nothing helped- not prescription meds, not a diet of saltines and ginger ale, not immodium- nothing.
A few weeks back when I was having a “good” day (read, more than 3 hours without an attack) I made it to an appointment with my therapist. While there, I mentioned to her that I’ve been confused about how poorly I’ve been handling this latest setback. I told her that my thoughts in the middle of the night while curled up on the bathroom floor were the darkest I’ve had to date. I shared that I felt like I was drowning and couldn’t catch my breath. “Is diarrhea really what’s going to take me out of the game- of all things?,” I shared with tears streaming. I spent the whole session trying to get to the crux of why, beyond the obvious reasons, this was so much more difficult for me than even the debilitating parts of grief or the most painful parts of surgery. Right at the end of our time together, something dawned on me.
Right after we lost June, I was scrolling Instagram and came across a comment left by a reader on someone else’s post. The comment is as follows:
“I had an 18 month period a few years ago that was, like, joke-bad. One thing after after another. My mantra was, ‘just be a cork on the ocean…a cork on the ocean’ It’s okay to take a break from treading (lest you tire out) and just float sometimes, knowing invisible forces are buoying you up.”
I loved this imagery so much and it became my mantra every time I hit a rough patch with my health or any time unfortunate news came my way. “Be a cork on the ocean, a cork on the ocean, a cork on the ocean”
I shared this with many people and a dear friend even found an old boat cork on Etsy and sent it to me in the mail as a token/reminder of my promise to float through this time. I think I have done a fairly good job trusting the invisible forces buoying me up over the past two years. I haven’t had to go on antidepressants, I have been able to feel my emotions in real time and even managed them appropriately enough. I have kept my head above water and for the most part maintained a positive attitude. But this latest setback felt like something I could not handle.
As I was telling her about this quote, I realized I hadn’t once thought about it since we left Pittsburgh the first time after the surgery. I filed my little cork mantra in the recesses of my brain because, of course, I didn’t need it anymore. The storm was over. I had taken myself out of the water. I was ready to be up and moving and walking again. I stopped floating and was onto bigger and better, normal-life things. I was beginning to feel what it felt like to not be sick and I began trusting that my body was working for me rather than against me for the first time in over ten years. It was starting to feel really nice.
And then a tsunami came. And I forgot to be a cork. I started treading water and I was using every ounce of might and strength I had left in me to combat the waves.
I continued crying as I shared this sinking revelation with this woman. “So I forgot to keep floating. I stopped trusting. I used up what small energy reserves I had left and I began sinking because each attack was a new wave that just hit me in the face. Water up my nose every time. A huge swallow of salt water every trip to the bathroom,” I exclaimed.
I would looove to report that everything changed after that session and that I began to float again with ease. While of course that was the goal and my homework as I left therapy that day, I was a lost cause. I actually became angry that I was being asked to continue floating. I’m just so sick and tired of floating.
A few days later I was trying to get a frozen banana out of a frozen Tupperware container with a fork (don’t ask) and for whatever reason, I lost control of the fork and wound up stabbing my hand instead of the banana. I screamed bloody murder. I was certain my neighbor was going to come check on me (Jordy wasn’t home). He didn’t. In the end, I was glad because the wound didn’t look nearly as bad as it felt and I later felt silly for reacting so strongly.
The diarrhea continued. We still had no answers. UPMC kept telling me to take anti-diarrheals that were doing absolutely nothing to help. I kept eating rice.
A few days after that, I was up early after a sleepless night and went to the refrigerator for a risky hard boiled egg. Don’t ask me how, but I wound up slipping in the most dramatic fashion, became truly airborne for what felt like a whole minute and came crashing down on my tailbone (!) on the hard kitchen floor. I screamed bloody murder…again. This time Jordan was home and came running in to find me splayed out like road kill in my bathrobe with my hard boiled egg in hand, the shell cracked into a hundred pieces.
It was my nadir, or, in keeping with the stupid cork metaphor, I was lying face down on the bottom of the ocean floor.
I’m writing today because the diarrhea has stopped. Praise God. I’m officially breathing again and have been encouraged by some good friends to write again. We finally figured out what the heck has been going on by slowly eliminating every drug (there are many) in my regimen. Through this laborious process, we have finally discovered the culprit. The moment I stopped taking the Bactrim, my stomach settled.
I am now slowly but surely crawling back up to the surface. I feel like I can function again. I won’t get scurvy after all! I will get to eat Thanksgiving dinner this year! I will travel again! I will survive. I am beginning to hope again for days that feel normal. I have planned out every meal for the next week and have never been more excited to eat things with flavor.
I think everyone who has ever experienced something really hard is tempted to write a book about what not to say to someone who is going through something really hard. I have made mental lists and often want to shout them aloud to people, but then I think about all the times in my life before now that I would have consoled in the exact same manner. I never would have consulted a book before consoling someone so why should I expect anyone else to? The only way people can know what to say or not to say is to have gone through it- and even then- everyone’s experience is radically different. I have several pieces of advice for anyone who ever wants to know, but the one I’ll share today is that you should never assume you know what someone is feeling. In the first few days after losing June, everyone told me I had every right to be angry- that I had every right to be angry at God, angry at the hospital staff, that it was normal to feel angry at myself. I felt zero anger. I didn’t feel an ounce of anger toward anyone or anything. I just loved and missed my daughter. I actually felt a peace beyond all understanding which perplexes me to this day but is undeniable still. Today, on the other hand- a year and half later, I feel anger toward God, anger toward the hospital staff and anger toward anyone who has the ability to easily have children. I’m having a hard time not being angry at everything, to be completely frank. Before my liver transplant, everyone assumed I was at my lowest and that now I should be elated to be alive and thriving! “You look so great, Sally!,” everyone tells me who sees me. I’ve lost weight from being sick and all well-meaning friends and family want to tell me how good I look as a result. It’s not that I don’t want people to tell me I look great, but I would maybe prefer a simple acknowledgement of our situation. The same applies to Jordan, or members of our family who’ve been through all of this too. A simple, “You’ve been through a lot. How are you holding up in this moment?” is usually the safest approach because it validates what we’ve been through and allows us to answer truthfully about that very moment. A general “how are you?” feels like such a cumbersome question and can be overwhelming. I feel tempted to say, “I’ve been miserable for weeks with debilitating diarrhea and now my hair is falling out from the medications I’m on but otherwise hanging in there” and since nobody wants to hear that, I resort to, “doing great, thank you!” which feels like an outright lie but also the best way to move through the conversation so I can escape it as soon as possible.
People don’t need to walk on eggshells- that’s not at all what I’m suggesting, but I think simply acknowledging someone’s plight or the reason for their grief is the best first step. Please never be afraid to just call out the obvious- “you have been through the ringer. Are you breathing right now? Because you deserve an award for that alone.” Or, “I love you and I’m here for you to either be as mad as a hornet or to sing genuine praises to the Lord on high.” Or “Whatever you’re feeling, whether it makes sense or not, is totally okay.”
Grief and trauma both have strange stages and years and years of ups and downs that make zero sense. Nobody would have thought I was at rock bottom after a successful surgery, when my skinniest pair of jeans finally fit me again. But that’s the nature of these things. It’s all just hard, for people on both sides of the equation. We are all learning by making mistakes and assumptions and we’re all being broken and rebuilt for greater understanding, for more wisdom, for more strength. I can still believe that and still be angry at God. I can still have faith while saying, “enough, enough, enough.”
In writing this post, I have decided I’m going to find that stack of cards and pull out a new word. Nadir has held its place in our home for long enough.
Updates from Sally and Jordan 