The Receptionist Lied and I Have Medical PTSD

“What it’s like to live my life in the light and the dark after losing my daughter.”

Summer Island, Maine - photo by author

This week, I received a lovely birthday gift. For the first time since we moved in April, I have school for both of my children. As a mother to young children, when school synchronicity begins, you cram every living thing you have needed to do for the last six months into the first few child-free days you have. Unfortunately, for me, ‘every living thing’ includes doctor’s and dentist’s visits.

These appointments may be no-brainers for most moms, but not for me. I am a mom who has PTSD. My daughter June died when she was eighteen months old from neuroblastoma.

My reality is that I just spent three months trying to avoid bringing my son to the doctor for a simple lead test.

I rescheduled a much-needed dentist appointment twice in the last three months and risked the dentist dropping me as a patient.

The dentist, the doctor, and the medical setting all trigger the PTSD in me.

………………….

After finally scheduling the lead test for my son, irrational worries based on very rational thoughts, began to bubble from below.

“What are they really going to tell me when I bring him in?
Could they know something I don’t?
Wasn’t his nose running last week?
Does he always cry out in his sleep?”

The moment I think of bringing my children or myself to the doctor, the lens of sickness lowers itself over my eyes. I start questioning the health of my children and myself. Everyone looks green and on the verge of vomit.

On more challenging days, the lens of sickness transforms itself into a doom spiral. When I’m deep in a doom spiral, I’m internally scrolling over traumatic events of my past. Usually, I lose all control and cease to function ‘normally’ in my life. I’m paralyzed by the fear of the unknown. I can’t fulfill my motherly duties.

I did not intend on spending my birthday week, a sensitive week since June died, in a doom spiral. I never wanted to wake up on the first day of the last year of my thirties on the verge of a mental breakdown, but that’s where I was heading.

Whenever I have a planned ‘trigger’ on my calendar such as a doctor’s appointment, I dovetail it with an enjoyable activity so there’s something to look forward to if and when I doom spiral. The enjoyable activity helps me look beyond the paralyzing event. It helps me see that life continues on the other side. It coaxes me not succumb to the anguish of the trigger.

It’s me leaving a light on for myself before I embark on the treacherous journey ahead. A torch burning outside of my home. When I leave in the middle of the night, it will help me to return through the dense, dark woods just before daybreak. I am always my weakest and most likely to give up just before the journey ends. The light provides me with hope when I’ve lost the path ahead.

………………….

Two days before my birthday and one day before my son’s lead test, I pull my levothyroxine bottle from the shelf in the bathroom. It rattles two measly pills. The label: No refills. I’ve done it to myself again. I’m almost out of my medication, and to refill it, I need an updated thyroid stimulating hormone (TSH) level, which requires a blood draw. The ball and chain of hypothyroidism.

It occurs to me that, perhaps, I could grab a blood draw while I’m at the office the following day with my son (our two doctors share an office). Instead of the feeling of doom, I usually get, I feel excited at the thought of killing two birds with one stone, especially when the birds are the trip to the doctor. Forget the stone. I’d pummel those birds with my fists to only have to go in once. This is survival.

Because my birthday is a celebratory day, one that bodes a deep appreciation for my life, I decide it’s the perfect end to two torturous doctor’s visits and something sufficient enough to look forward to. My torch.

It’s all going to work out.

I call the office and ask for a blood draw for myself before or after my son’s appointment.

“I’ll see what I can do and call you back,” says the receptionist.

………………….

A few hours pass. I’ve forgotten the dread of the doctor until the phone rings.

“Hi, it’s the office of–”

“Thanks for calling me back!” I’m still elated about the heavy, jagged rock I’m equipped with and ready to throw.

“So, the doctor wants to meet in person to go over your lab results.”

“Why? My labs were drawn four months ago.”

“She thinks it would be a good idea to have a conversation face to face because some of the results were outside of normal range.”

“She told me she would call if anything were outside of normal range, FOUR MONTHS AGO. Why didn’t she ever call me?!”

“I don't think there is any cause for concern–”

“I need to know what labs were out of range, RIGHT NOW.”

There I was: doom spiraling.

“Lipids were high.”

“Lipids?! So she needs to see me in person; WHY?” I demand.

“She just thought it would be a good idea to do a follow-up. You can talk to her about your thyroid then. We will do a blood draw after you speak with her.”

“Speak with her about WHAT, exactly?”

………………….

In my doom spiral, I was suddenly dying. My body ached. I felt a pain in the upper right quadrant of my abdomen. It was surely my liver shutting down. I broke into a cold sweat. My heart raced. Maybe because I was going to have a heart attack related to my new diagnosis of high cholesterol. Whatever it was, I had no more doubts; I was certainly on the decline. The bruise on my upper thigh from walking into my son’s dresser was REALLY blue. It had bruised so easily; was it too easily?

Wait, is this denial?

Have I been in denial all this time?

These were similar thoughts I had after June was diagnosed with cancer. I questioned myself and my ability to mother. I questioned my reality.

We went from the nonexistent, living an ordinary life, to the existent: a grapefruit-sized tumor growing in June’s tiny eight-month-old abdomen.

Life changed in a moment without notice. My entire life was vacuumed into the ethers.

………………….

When June was diagnosed, my perception of reality was warped. I couldn’t trust myself any longer. My eyes and brain deceived me. They didn’t allow me, an actual nurse in my day job, to see what was so blatantly obvious: my child was deathly ill.

I once read that the antidote to anxiety is not calm; it’s trust. When I stopped trusting myself after June was diagnosed, my anxiety threatened to swallow me whole. Similarly, when I stopped trusting my doctor the day I believed I had slipped through the patient cracks, my anxiety made me question my own health. I also questioned my sanity.

When the doctor’s office returned my call, it was as if I was taken in the night blindfolded. It happened so quickly that I couldn’t light the torch before I left. There was only darkness at the end of the tunnel.

The worst kind of doom spiraling is when there is no light at the end. When the only light begins to feel like it is death. Thoughts like, “What’s the worst that could happen?” emerge. When the answer is death, and you are able to reconcile with it being so, you have epitomized the doom spiral. “Maybe it would just be easier to die than live like this,” you think. The only blip of relief inside the spiral.

………………….

In the hours after the conversation with the nurse about my labs, I planned my funeral. I texted close friends and family about my new predicament.

I thought of everything I had yet to teach my children, which begged the question, “How much time would I have left?” My children would surely go on living without me, but I needed to teach them so many important things about life without having their Mama around. Regardless of how much time I had, it would never be enough.

If you ask a 100-year-old person, “Is there ever enough time?” I imagine they might say, “Time is the only currency you never trade for anything else.”

………………….

I decided the doctor overlooked the red flag on my labs. She probably sees fifty patients in a day. She also knows my PTSD history. Surely, she wouldn’t call me into the office if it wasn’t the most utmost serious condition.

My brain stops working in the doom spiral. It’s as if nobody is home. The woods have become the jungle, and I am fending for my own life. The only thing I can do properly is manage to stay alive by placing one foot in front of the other. There is so much light around me, but suddenly I’m blind.

In the midst of my panic, I almost forgot about my dentist appointment.

I should get in the car, but instead, I crawl over to the living room rug. I lay down. I‘m frozen. I am in child’s pose, box-breathing. I need a paper bag because my breathing pattern is more like hyperventilation. I stay in child’s pose because finding a paper bag is too great of a task. I’m alone.

I roll into the fetal position and stare at the wall. I sob. I think about June. I think about our life together. I think about my children without their mother. Makeup is running down my cheeks and into the light blue carpet. Smudges of bronzer traveling in tears stain the rug.

I can’t get up. If these are the last days of my life, how will I live them to the fullest when I can’t even get off the floor?

This is post-traumatic stress disorder (PTSD).

………………….

I make it to the dentist. They shoot my gums up with Novocaine. “This will make your heart race for a bit,” the hygienist says.

My fatty heart may now actually burst. My heart has been leaping out of my throat since the doctor’s office called a few hours ago. I try to stuff it back into my chest by deeply swallowing over and over. In the end, the shots of epinephrine to my gums only squeeze out more nervous tears.

“Are you doing okay, hunny?” The hygienist asks.

“Hard day.” The last two words I’m able to say before the chiseling and drilling begins.

Tears run down my cheeks, seeping into the hair on the back of my neck as I lay in the chair. The drill in my ear lures me further into my doom spiral.

………………….

When I arrive home, I crawl onto the couch, “What’s wrong with you?” my husband asks.

“I’m not well.” Half my face is numb. I have a wad of gauze in my left cheek where I bit off a chunk of my cheek when they gave me the final instruction, “bite down”.

What’s wrong with me? I am living my last days on earth.

………………….

I toss and turn in the night. It occurred to me that the appointment I scheduled to go over my labs was for Friday the 13th, which was also the day after my birthday. No torch at the end of a long, dark tunnel, a bad omen, a seal of my fate. I had to reschedule.

My husband says he will come home from work early to watch our son so I can get the appointment over with.

As I drive to the doctor's, I look out the window at the trees. I think about how they would keep growing after I died, and their leaves would return to their summer green.

I look at the other cars on the highway and wonder which cars also have sick people in them like me and June.

………………….

In the waiting room at the doctor’s office, I wonder if the nurses behind the desk are whispering about the news I’m about to receive. When I am called in, I imagine there will be another person in the room, like a social worker, to mediate the conversation after the doctor reads me my fate. Just like there was when we were told June had cancer.

I close my eyes and pray. Tears dribble down my face. I thank God for the amazing life I’ve been given. I tell the Universe how grateful I am to live every minute of it. Even the most excruciating minutes, like those of June’s final breaths.

………………….

They call my name. The two Ativans I popped in the car before entering the building are starting to work. I remain calm. I find it odd when the nurse who escorts me to the exam room asks me what I am in for. Didn’t he know? Didn’t the entire office know?

The doctor comes in, looks at her clipboard and then back at me. “I see here that you wanted to go over your lab work,” she says.

“I thought YOU wanted to go over my labs?”

“There was nothing concerning on my end; your labs were all within normal range.”

The light in my brain flickers back on. Pain turns to anger and then turns to ease.

Suddenly, I can see the glass of wine I might enjoy on my birthday the following day. I can imagine inhaling the tops of my children’s sweet but stinky heads after a long day of school. I imagine finally rolling out that pita dough I made and put in the fridge two days before. In a matter of milliseconds, I go from dead to alive.

I am slowly exiting the doom spiral.

………………….

In twenty-four hours, I relived the anticipation of being told my life was about to change forever. Your comforts of knowing are no longer yours.

In my doom spiral, I explored every last nook and cranny of death. I had to. I could only feel my way out.

It is exactly what I did when June was diagnosed with cancer. When my reality broke. When my world went black. I crawled around in the dark, hoping someone would save me by saving my daughter. By curing her cancer.

I know what it is like to not be saved. I know what it is like when no one can help you.

………………….

PTSD can be really odd. Today, on my birthday, two hours before my alarm, I woke up alert and peaceful. I made a hot cup of coffee. I sat down on the couch. I counted my blessings. I wrote this story. I watched the sunrise.

Just yesterday, I could barely lift myself from the floor. Today, I have so much more life to live and give.

Sometimes, to the outside world, there’s nothing rational about our thoughts as pediatric cancer parents, although another person’s irrational thoughts may be very rational to us. Rational or irrational, it’s all subjective.

For example, my irrational thoughts tell me we only have this life. The rational ones say that despite leaving this earth, June is still alive.

What’s rational to you?

Whatever kind of day it is, rational or irrational, doom spiral, or PTSD — It doesn’t matter when it all goes away. In fact, it leaves the opposing force of beauty magnified in its place. It makes the torch shine that much more brightly. It comes with a price, but it makes the enjoyable activity feel like absolute heaven.

Today, I turn 39, and thanks to yesterday’s darkness, I’ve never felt more alive.