Awake

I lie in bed unable and unwilling to let sleep return.  It’s another night of The Dreams.  My breathing has returned to normal, and I’ve sorted out what was dream and what is real.  You know what that’s like, right?  You wake from a dream so real that it takes you a few minutes to separate the dream from reality. I do this nearly every morning lately.

In the dreams, I’m back in those early days of sickness, a few months after my Lyme disease diagnosis. I’m in bed, starring at our beadboard ceiling, silent tears streaming down, my ear saturated from them.  Except for the low hum of a box fan, the house is silent. There is something akin to an electric storm in my head, so I can’t process books or television, yet somehow I know that I am alone in our house.

Sometimes in the dream I’m in pain, my knees hot and too tight, my spine screaming, head pulsing.  I need to pee, so I’m debating if it’s worth it to grab my cane and hobble into the bathroom or if I can wait until someone comes home and helps me.  Sometimes I’m hungry, but the kitchen is downstairs and steps are insurmountable.

Sometimes in the dreams I am back in the darkest place, begging for the sweet relief of death.  I’m planning ways to end the torture of this life, truly believing my children and husband would be better off without me.  Those are the hardest dreams to fall asleep after.

Always, in every dream, I am alone.  I relive the despair of lost friendships.  I feel my own toxicity, and I can’t blame anyone for needing to escape my darkness.  After all, I want to escape myself.

That’s how I wake, with the ache of aloneness, the sorrow of loss, and the fear that this will never end.

The last few weeks The Dreams have tried to steal the joy I’ve cultivated in the daylight.  I stay busy with my daughters, checking off the boxes on our COVID-19 bucket list.  From dissecting a frog to taking bicycle rides, we’ve thrived during this time together. Facilitating my daughters’ educations while their schools are shuttered has filled a hole in my life, and Izzi, especially, is flourishing with the one-on-one teaching.

Life has been good, even beautiful. A perk to living in a house that is 110-years-old is that there is always a project to work on, and the fact that I have the desire to create again is confirmation that I am physically better now than I have been in six years.

So why these dreams?  Why now?

I think my current world is hurtling me into the past. COVID-19 is triggering me.  Not as a result of being sick or the risk of becoming sick.  Not even because society looks different right now because, really, there’s not much difference between this and my day-to-day life before quarantine.

Stay home?  No problem.  Lyme initiated my ability to isolate, thanks to pain and fatigue so deep that the mere idea of leaving my bedroom was exhausting. No contact?  Hallejuah, I won’t have to endure those well-meaning but excruciating hugs.

Masks and gloves?  Been there, done that.  Anyone who has underwent chemotherapy knows how to do this.  We’ve stayed home all flu season, felt the penetrating stares while donning masks at Walmart, and scrubbed our hands raw appointment after appointment.

Cancer patients are pros at safety measures and perfected their social distancing skills long ago.

No, I think the trigger was the voices.

My husband, John, is an administrator of the high school in which I taught for 15 wonderful years before having to retire at the age of 37 due to chronic Lyme disease.  Everyday John spends hours in virtual meetings. Department meetings, leadership team meetings, administrative meetings, happy hour meetings. Our house is old and small, so if we’re inside, there’s no avoiding overhearing.  It’s those voices that carry through our home like wind chimes in a thunderstorm. Colleagues and friends who stood by us at our wedding, coached our sons, collaborated on project after project –they are the voices who for so long held me up.

But they’re also voices I haven’t heard in this house in years.

I think this, combined with forty-some days of quarantine, have provoked the harrowing dreams of loneliness.

The bitterness of being forgotten, which I thought I’d overcome, is now, in the darkness, choking me.

My mind says this unprecedented time in our country, when phrases like CDC guidelines and social distancing, legitimately IS difficult.

  • But my heart says if you think 45 days is rough, try 45 months.
  • Then do it alone.  Currently, the country is collectively learning and hurting from COVID-19, so there is a ton of support.  The world has paused WITH you, rather than moving on without you.
  • Do it with pain.  Do it without being able to focus on an audiobook or a new Netflix show.  Going outside isn’t an option.  Your entire world has become the four walls of your bedroom. I am afraid of contracting COVID-19 and of cancer returning, but I am more afraid of a Lyme relapse.  Let that sink in.
  • Many are lamenting their losses and legitimate heartbreaks.  But if you’re sad about missing out on a handful of important events in your child’s life, try doing it for entire seasons.  And then years of seasons.
  • Do it without the knowledge that this is temporary.  You know eventually this quarantine will end.  With Lyme I learned it never will.
  • Do it with the knowledge that your career is over.  Not just your job.  Your career.  The one that is your passion and all you ever wanted to be when you grew up.
  • Do it without friends who show up.  Do it after your sick card has expired and people don’t understand how you can possibly still be suffering.  You should’ve either gotten better or died by now.  People don’t understand this never-ending state of limbo.
  • And since you and your sickness have pushed everyone else away, do all of this with only your immediate family.

I’ve rewritten this post dozens of times.  Every time I reread it, I know I sound like a heartless bitch. There’s no getting around it.  I delete sentences, knowing that is too harsh to say aloud, then retype them, certain that these words need said.  I just don’t want to be the one to say them.  I have conversations with God that go like this: Please, God, pick someone else, anyone else. Don’t give this burden to me.  Please. Give me a different topic.

And a memory flashes before me, a text I received in 2016.

When my sister-in-law Anna lost her 12-year-old son in a drowning accident, she trudged through her grief, even the earliest days of it, publicly sharing her raw emotions and experiences with the readers of her blog, An Inch of Gray.  We had an intimate glimpse into every mother’s worst nightmare.  I read each post knowing I would cry, but I felt like it was the least I could do, the smallest way I could stand with her in her pain.  Anna’s blog led to a New York Times best-selling memoir, Rare Bird, and Anna suddenly found herself as the face of bereaved parents around the world.

I will never forget a text Anna sent me a few weeks after I’d officially retired.  I was completely defeated by this loss, but felt ridiculous expressing this sadness to Anna. My loss felt petty compared to hers and I told her that.

“Babe, you get to grieve,” she said. “Losing your career is a huge loss and it’s okay for you to grieve that.”

Anna, the woman who’d endured the most tragic of losses, acknowledged my reality and granted me permission to be sad.

Anna gave me grace.

It’s weird that we sometimes need permission to feel what we are already feeling, isn’t it?  But somehow when a person takes our hand and simply says, “I see you,” this validation endorses our emotions and allows us to move forward.

I want to extend that same grace here.  I want to say, it is okay.  Feel it.  The anger, the fear, the disappointment.  Feel it ALL.  Grieve the losses of this season.  

Again and again, separate the dreams of slumber from the reality of today.  Know your triggers.  Don’t let voices or behaviors pull you back into the past.  When the bitterness you thought you’d conquered fills the entire cavity of your chest, write or paint or jog or do whatever makes you feel more like you again.  Cry.  Laugh.  Throw something.  Get it out.

Then awake. 

Don’t do what I’ve done for the past couple weeks.  Don’t swallow it, holding it down and pretending you’re okay.  Meet your feelings in the daylight so they don’t suffocate you at night.

Lately I’ve been reading about medical PTSD.  Honestly, I felt like a hypochondriac just googling it, but upon reading that first article, “Chronic Illness and Trauma Disorders,” the dreams made complete sense.

“Most traumas come from the external environment: a natural disaster, an attacker, a war. Medical trauma comes from within. Our bodies are the source of danger, and, as such, it can seem that a safe haven is not available to us (Edmondson, 2014). Shock, disbelief, terror, heightened anxiety about the future, and disillusionment in the medical establishment are prevalent (Cordova, Riba & Spiegel, 2017). Perhaps most salient is the changed understanding of our own vulnerability to pain, suffering and death. Our previous worldview — in which the world and our place in it were things we understood — has been shattered by illness, and our perception of safety has been altered irrevocably (Edmondston, 2014).”

Written well before COVID-19, the author, Katie Virant, goes on to explain the symptoms, including nightmares, insomnia, and anxiety, as well as the importance of coping skills as part of treatment. Virant claims the “fragmented flashbacks need to be named, felt, and placed into the story of your life in order to be integrated.”

During the day, I’d been staying so busy here that the fragments couldn’t catch up to me.  After reading, I realized that I need to stop running and instead sit with the fragments, feel them, and acknowledge their place in my story, remembering that they are my history, not my current chapter, and recognizing that I still have work to do on myself.

The strangest part is that in my current chapter, I am not alone. God has sent new friendships, new passions, new goals.  There is no void that needs filled.  I do not, consciously, feel abandoned, understanding that circumstances change us and thus our relationships ebb and flow.  I am not lonely; I feel happy and hopeful.

Maybe by unleashing my feelings here, the dreams will end.  I don’t know.

I’d imagine I’m not the only one triggered by the COVID-19 pandemic.  Anyone who has or is battling a chronic illness is at risk. Today, check in with yourself and your emotions.  It’s difficult to battle medical PTSD because the trigger is our own bodies, which seemingly have betrayed us.

If you have a friend who has battled cancer, Lyme disease, or any extended illness, check on them. Ask what they need right now. Probably, they simply want to be seen, validated, and loved.

We need to remain awake to our own and each other’s needs, extending gentle grace in every way possible, forgiving our own weaknesses and meeting our nightmares in the daylight, allowing us to dream of beauty and hope. Always.

–Jena

(Art by my daughter Gracie Pettit.  I asked her to draw “a sad girl in a face mask,” and 45 minutes later she handed me this.  Amazing!)

 

 

 

7 thoughts on “Awake

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  1. Thank you for reading my mind and putting my thoughts in print.
    I have had a stem cell transplant that required 100 days of isolation.
    This pandemic is small potatoes compared to that.
    At times I wonder if the transplant was worth it , if we will die of COVA,
    Your writing, like your s-I-law’s has s so inspiring.

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  2. I’m going to need some time to process this but just wanted to do a quick thank you for now. I think it puts into words and emotions what I have been feeling but hadn’t been able to put into words about the parallels with my young son’s months long battle with pain and Lyme like symptoms. The tears are just flowing but in a healing way. Thank you.

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  3. Yes! Thank you for your words. I, too am a chronic Lyme sufferer (diagnosed by accident 2yrs who when my other autoimmune diseases didn’t explain my endless sufferings). My daughter was diagnosed with cancer 11 years ago at age 2 and endured cancer treatments, 14 surgeries, complications, and lifelong side effects… and now battles debilitating panic attacks and depression as well.

    This pandemic is equal parts SO familiar and foreign for so many of the reasons you mentioned. She and I have been sick on and off with bizarre ailments during quarantine and I think it is all complicated by the PTSD we’re experiencing and our bodies and minds trying to insulate themselves.

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  4. My daughter has suffered with Lyme, had her life unimaginably altered by Lyme. It’s been 8 years. I count it a blessing that I also was diagnosed several months after her. It helps me understand on some level what she’s enduring. You expressed exactly how I have felt. Thank you, and God bless.

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  5. Just beautiful …I came here from Anna’s post..you have so much to say and I am glad you found the courage to publish it…xo Jane

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  6. Thank you so much for having the courage to write what those of us with chronic illness repress on a daily basis. Everything you said touched my inner core, especially the helplessness brought on by my body always attacking me and not being able to get away. The world we knew when in good health is now forever changed–it’s a hard pill to swallow. If only the well could understand just how strong we really are, but, of course, they can not, nor do they want to hear about our troubles after, as you say, our sick card runs out. It’s sad when we lose our friends because of our illness, but it has also shown me who my friends truly are, and, for them, I am blessed. My husband has to be a saint, because he has never faltered in caring for me and lifting my spirits in the 15 years I have been ill, but it also kills me to know how much this day in and day out stress has effected his own life. I carry that guilt every day. You are beyond fortunate to have Anna for a sister. I have read her blog for years ( knowing my daughter died, a friend lead me to Anna’s site) and can feel, through her beautiful way of expression, what a kind soul she is. Anna put into words all the feelings I have but could never fully express, and I will always be grateful, yet sad, that someone else understands my own plight regarding the loss of our children. In reading your feelings herein, I can see Anna is very fortunate as well. God bless.

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