Double Whammy

My Roller Coaster Week

Today is July 31 … eight days since my daughter’s gynecological appointment and we still don’t have resolution.

Her gynecologist noted an issue during her 2019 appointment. Because I was in the waiting room, I only heard a casual mention of it on the way home. Nicole said the doctor was going to consult with an anesthesiologist and get back to us. That didn’t happen. Even after calling the office to inquire about it, we never received a call back. And so, this appointment seemed important to keep even during COVID.

I called the office and explained that because of my daughter’s cognitive deficits, I needed to be in the room so that I would understand what was going on. The nurse told me she would put a note in her chart. I called again to make sure this was in place and to check on COVID procedures. I was told we could check in from the parking lot and be placed in an examination room upon arrival.

What happened led to me to that roller coaster ride all week:

• Down because, despite my advance preparations, the doctor’s office wasn’t prepared for our appointment … it was as though I hadn’t even called.
• Down because despite a recommendation for how to deal with my daughter’s issue, I didn’t feel safe following that recommendation.
• Down because the doctor expressed amazement that we are following COVID guidelines … an unsettling interaction leaving me feeling even less safe
• Down because I felt the need for a new gynecologist, but in light of COVID, how do I go about getting one.
• Up because friends helped me think this through and suggested getting a second opinion.
• Up because one of those friends helped me find a wonderful gynecologist. She doesn’t use answering machines. Human beings answer the phone at her office. They provide compassionate care, providing resources and educating women about preventive health measures.
• Down because she doesn’t take Medicare/Medicaid patients. My daughter cannot see her. This doctor doesn’t even take Medicare, so I couldn’t see her if I wanted to.
• Up because this doctor’s daughter answered the phone, and upon hearing my situation, referred me to her gynecologist who she highly recommends.
• Down because after pushing the correct buttons, the human being who answered sounding very stressed put me on hold … and then I was cut off. After calling back and pressing those same buttons …
• Up I actually got a human being.
• Down because this doctor needed a referral from my daughter’s PCP.
• Up because I by some miracle actually reached the doctor’s nurse and had a friendly conversation about how scary these COVID times are.
• Down because it would take her a couple of days to get back with me.
• Panicked because I forgot to give her the new doctor’s name & fax number. Called back with that information.
• Up because the doctor hadn’t attended to this yet and her nurse put it into the URGENT category.
• Confused because the next day, on day 7, the nurse called to say that the doctor needed more information about her issue. The nurse said she would call later after giving this information to the doctor.
• Down because she didn’t call. A week later, this is still unresolved. I hate being at their mercy.

It is very difficult to advocate for someone else and make decisions for them. I probably should have sought out another gynecologist when we didn’t receive a call back. I shouldn’t have let this go so long.

I tried to handle it all with equanimity and I mostly succeeded. I slipped some while calling the new doctor for a second opinion and having to navigate their answering system. I’ll give myself some grace for that. I just hope there are no negative consequences for my daughter.

All of this weighed heavily on me during my morning walk at Cox Arboretum and as I listened to one of my favorite podcasts, “On Being.” I clicked on Krista Tippett’s series, “Living the Questions,” titled “Navigating Loss Without Closure” … a topic I know a lot about.

In the light of the myriad ambiguous losses we experience during our worldwide pandemic, Krista updated a 2016 interview with Pauline Boss, author of several books related to loss, grief, trauma, and resilience. Krista hoped Boss could offer “practical intelligence for shedding assumptions about how we should be feeling and acting as these only serve to deepen stress.” 

Sanity Check

I consider it a check on my sanity when I hear someone else having my same feelings and/or experiences, especially someone I admire … and even more so when that someone is an expert in the field.

I have good days and bad days. And I have days that start good, and then I just fall into these holes of just feeling so disoriented and despairing … — like I have nothing to hold onto … how might I counsel myself during those waves?

~Krista Tippett in conversation with Pauline Boss

I could relate to much of the way Pauline Boss describes unresolved grief. It sounds very much like “chronic sorrow” …the story of rearing children with an undiagnosed disease recounted in my memoir, A Long Awakening to Grace. She’s an expert I can trust to give me a sanity check.

I have exactly the same waves. … I’m grieving … this (the pandemic) has gone on so long, I think there are days when you should just let yourself feel sad. And be easy on yourself on those days. … I remember, one day, I thought, ‘I think I should do nothing but watch Netflix, today.’ And that took up three hours, … I felt better afterwards. … I don’t think we should fight grieving. I think we have a lot to grieve right now. It’s reality. And so, on those days when you feel that way, I would just embrace it if you can, and go easy on yourself. 

~Pauline Boss in response to Krista Tippett in their “On Being” conversation

… grief is exhausting. Somehow, just naming that fact, I find helpful, because at least some part of me stops beating up another part of me for being exhausted for no reason.

~Krista Tippett’s response to Pauline

I felt better just hearing these two extraordinary women admitting to having the same experience as I am. Yesterday I lay on the couch all day waiting for that call from my daughter’s doctor’s office … the call that didn’t come.

Pauline emphasizes that we are not pathological in these situations. It is the situation that is pathological … “an illogical, chaotic, unbelievably painful situation.”

You have to listen and empathize. By the way, speaking of empathy: if nothing else, I hope this population in this country has grown more empathy than we had before … I hope we notice each other more; that we become more community-oriented and not just so individual-oriented … we’ll get through this, but we have to be kind to each other during this period. We have to be kind to each other now.

~Pauline Boss

Lost Connections

Hearing Pauline Boss talk about the need to be kind to each other now, I just felt so sad about my experience with the so-called “healthcare” system this week.

Sadness is treated with human connection.

~Pauline Boss

A book I read recently, written before the pandemic, called Lost Connections: Why You’re Depressed and How to Find Hope makes the same point.

Depression and anxiety are now at epidemic levels. Why? Across the world scientists have uncovered evidence for nine different causes. Some are in our biology—but most are in the way we are living today.

~On the jacket of Johann Hari’s book, Lost Connections

The response I received during my interactions with the healthcare system this week is an example of disconnection. I felt so alone with my dilemma:

• I pushed buttons, was put on hold, and listened to music not of my choice while I waited for human connection.
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• I watched office staff stare and type into computers, rarely even making eye contact while I longed for human connection.
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• I heard a nurse tell my daughter and me that Nicole couldn’t receive her pap smear because it was done last year and Medicare only pays for every other year. This nurse hadn’t even looked at Nicole’s chart. I have to wonder if the importance of this visit was even recorded in her chart, despite my calls. I felt shocked at the lack of human connection and concern.

The list could go on and on.

Controlling What I Can

I think none of us should feel helpless. And we do now, in many ways. So we have to decide how to cope with it, have some things you can control, because you certainly can’t control the virus, yet.

~Pauline Boss

When I returned home from my walk, I took control of what I could. I called Nicole’s doctor to talk with the nurse case manager. “I’m calling because I didn’t hear back from you yesterday. I’d like to know where we are in the process.”

“Is this about the gynecologist referral?” (Sigh of relief … she remembered us and our issue)

“Yes, it is.”

“The doctor approved it and I sent the paper work to (I don’t remember what department she named). It should be sent out today.”

 It should be. And so we wait … longing for care and kindness.

It’s a double whammy when you don’t get that during this difficult time of physical distancing.