Day 1,111

My Lyme is flaring.  The IV-antibiotic treatment is causing spirochetes to die off faster than my body can expel them, and I am trapped in my own circle of hell.  At once there is pain throughout my body.  It consumes me.  I cannot think; there is only pain. I cannot eat; I will throw up.  I can cry, but the tears will roll silently as all my energy is being soaked up by the pain, the chills, the heightened sensitivity to light and sound.  My brain feels slow, and I struggle to articulate what I need.  When words do come, they often aren’t the correct words.  My right eye is nearly shut, a nuisance of the palsy that waltzes on the arm of a massive headache.

I take all the medicine I can to try to get this under control, bottles opened by John because it’s too painful to twist and push.  Then I resort to more primitive measures –a detox bath of hot water, Epsom salt, and frankincense.  I can’t turn the knobs; the joints in my fingers scream with the effort.  My husband is here, running the bath water.  Soothing me, loving me, letting me cry or scream as I succumb to the war raging inside my body.  I’m starving for air as just this little activity has exhausted me.

John helps me in the tub, and I cry as the water against my skin hurts.  Gradually, the Epsom salt makes its way into my body and eases my joint pain and achiness just a bit.  My hair hasn’t been washed in days.  It’s a process, requiring more than just me, but John is here.  I notice the adhesive tape holding the cord from my chest port is coming lose, so I thoughtlessly reach up and pull the tape off.

Instantly, the world shifts.

I’d forgotten that the tip of the tape covered my port dressing, and I’d accidentally pulled the dressing open, exposing the chest port needle to air.  The dressing must be immediately removed, cleaned with alcohol, and re-covered.  There will be no shampoo. I drop my hand and sob.  Full-on, shoulders shaking, gulping for breath, weeping.  It’s the last straw.

John quietly walks out the door, giving me a minute alone with my anger.

Lyme disease strips you of all dignity.  She’s a evil bitch, leaving nothing of beauty untouched.  Vulnerability is taken to levels you didn’t know existed, and you have no choice but to realize you cannot fight her alone.  You need others.  I want so badly to shelter my husband from this side of me.  I want to be strong, put on a smile, maybe a little makeup, and be okay enough for him to never see this ugly, ugly me.  I am a shell of the woman he married, and he will forever see me as sick.  I detest this, but there is no one else to turn to.

John is all I have.  He is the only one who has not put an expiration date on my sick card.  He gets it, as much as one who doesn’t have it, can get it.  He doesn’t shy away from it, but instead redresses my chest port, helps me walk, and tenderly washes my hair.  He gets me to a chair in the sunshine, brushes my hair, and tries every trick he can think of to make me just a little more comfortable.

We’ve been married for 1,111 days, and bitten on our wedding day, I’ve been sick for all of them, though the first three months we weren’t aware.  Once symptomatic, colleagues sent notes and flowers and stopped by my hospital bed.  As days turned into weeks, friends sent food, care packages, and cards.  I had so many texts and Facebook messages I struggled to respond to them all.

Fast forward three years.  I am, in the midst of this flare, as sick as I was those first two weeks, but our sympathy card has expired.  There will be no help.  No one offering to transport our younger children.  No food, cards, or thoughtful packages.  My cell phone now often goes days without a single text.  My friends are busy, living their lives, taking their family vacations, and we are stuck almost where we were 1,111 days ago –but now without the visible warm support of family, friends and community.

I try hard not to be bitter.  How can I blame them?  This disease makes NO SENSE.  I should either be better by now ….or dead.  It is easier to distance oneself from this train wreck rather than to take a seat, knowing full well there is no cure, there is no FDA approved treatment, there are no answers.  There are good days and there are hard days, but there are no days like before.

Sickness isn’t suppose to look like this.  You get sick.  You get a diagnosis.  You get treatment.  You get better.  Period.

God, I wish.

So I try hard to focus on the fact that my husband has not left my side.  Everyone else just doesn’t understand or they aren’t strong enough to lean in to this kind of pain day in and day out.  Showing up for us is hard.

Showing up for us means being a witness to the carnage, and it’s easier to keep one’s distance.

Showing up means loving and helping without really understanding.

Showing up is an admission that what has happened to my family could have just as easily happened to theirs.

For most of the friends I once had, we shared a common bond –our children or our careers.  Now our kids are grown, and at the age of 40, I am disabled and retired.  What would we have to talk about?  I know this, so I pretend the isolation doesn’t hurt.

When my extended family gets together for a birthday and doesn’t invite me, I remind myself that I couldn’t have gone anyway.  I’m too sick. But a little voice whispers, “It would have been nice to have been asked.”

When friends and family seem to have plenty of time to post updates on Facebook, but no longer send me texts or private messages to me, I remind myself that they just don’t know what to say anymore.  It doesn’t mean I’ve been forgotten; I’m sure I’m in the private thoughts and prayers of individuals daily.  I’m just too difficult to love out loud.

I make excuses because languishing in anger or sorrow just takes more energy than I have to give, and these excuses hurt less than allowing any other reality to settle into my broken pieces.

I cling tighter to my husband and my daughters and my God.  I continue to take my treatment, knowing tomorrow will likely be worse.  But in a few days, once we get past this peak, I will be reclaiming my body from the Lyme spirochetes for this relapse.  And for today, my chest port is covered, my hair is clean, and we’ve made it, hand in hand, through this hell, to bedtime.

And somehow, there’s a little satisfaction in knowing beyond a shadow of a doubt, we don’t need anyone else.  I want them, terribly, but we don’t require them.

I don’t need to explain this disease, again, to my friends, and hope they’ll lean in.

I won’t waste my limited energy on people who have stopped showing up, especially those who know better.

Nope.  As we hold each others’ hands to pray each night, I praise God for putting just the right people under the roof of our home.  Our hands each night form an unbreakable circle, reminding me that we will get through this and be stronger for it.  These loving hands are enough.

I once thought being unable to wash my own hair was the ultimate shame, the ultimate slap in the face to any independence I might have claimed.  Time and pain have taught me that this incredible vulnerability is actually God’s way of showing me that, as my husband or daughter tenderly scrubs, rinses or brushes, I am loved completely, especially in my weakness.

I am blessed with two of the cutest little nurses in the world.  They are my strength, my reason for fighting this battle, my absolute joy.  John is my rock, my admirer in spite of the ugliness, my best friend.  When I miss my old life, my friends, my community, God uses days like today to remind me that he has already given me everything I need in these three people and Himself.

I don’t know when healing will come, whether it will be Day 2,000 or 12,000, but I trust with all my heart that these people will be by my side on that joyful day, and we will celebrate the faith, courage and love that got us here.

One unimaginably beautiful day.


4 thoughts on “Day 1,111

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  1. Jena – my heart aches for you. I have been where you are. My daughter and I have Lyme, yet she was by far the sickest. We made it from bath to bath. I can’t remember the complete horrors of the last 3 years of her treatment. She did hide under our coffee table for over a year over taken by pain, hallucinations and anxiety attacks that lasted days. I understand the anger and pain of being sick so long that you feel forgotten and people no longer want to hear your pain or struggles. You feel ashamed of being angry at the care those with cancer receive. You so eloquently and powerfully describe the pain of existence with these horrible diseases. I pray this flare subsides. I pray for amazing healing and for love to completely surround you. I pray that you cling to the light during this long, long night and walk into sunshine filled days. Much love, Katie


  2. Those of us with Lyme understand. Lyme is the ultimate test of spirit, faith, and resilience. Lyme forces us to deepen or reignite our relationship with God because this is a disease of loneliness and isolation. The ultimate healing of Lyme involves learning that we must learn to heal ourselves with God’s help. I have experienced everything you are describing. Lyme destroys everything we once thought we knew about ourselves, and leaves us as a blank slate upon which a new identity is born. Often times I must remind myself my suffering is not without merit. Please keep writing.


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