Lyme disease brings both unavoidable losses and unsung heroes
By Donna Falcone
Picture a couple raising two sons, hundreds of miles from any other family. The husband comes home from work and finds his wife lying in bed right where he left her that morning… again. He asks “What did you do today?”
Because she is feeling inadequate, the wife hears unspoken commentary on the mountains of laundry downstairs, the loss of income she’s caused, a reminder that tonight is Open House at school and dinner isn’t ready and homework hasn’t been done, and on and on and on. They argue. She cries. The children cook dinner.
Life with Lyme
Life with Lyme goes on and, with the help of treatment and a really good therapist, she begins to flip her perspective. She considers that while her life had been completely derailed, his life was also feeling quite over… quite disrupted… quite out of control.
She realizes that his question of “what did you do today” was courageous, framed in the stubborn hope of hearing she did anything other than stay in bed all day, even if it was just getting the mail… any glimmer to indicate his bride was starting to rebound.
He is terrified, but he doesn’t want to burden her with that. Everything is slipping away and there is nothing to do that isn’t being done, and he wonders how he will raise the boys alone because it’s looking more and more possible that her heart will simply stop beating. They both think it, but neither will say it, fearing that even uttering these words will break a fragile magic spell that is keeping her alive.
A family journey
Lyme disease takes a toll on more than the body of the inflicted. It’s a family journey.
There was a new normal, and it kept changing and I imagine it’s that way for a lot of Lyme patients. Maybe you started going to bed earlier and earlier after work and eventually stopped waiting for night to fall.
Maybe you couldn’t go to work anymore, or grocery shop, or make dinner. Maybe you couldn’t hold a baby because your arms kept falling asleep. Maybe it took all day to fold a single load of laundry because that missing sock sent you into a sobbing rage.
Maybe family finances were dwindling as your medical expenses climbed.
When life changes so drastically, it’s hard on everyone, and the downward spiral seems endless. We find ourselves caught up in an illness that the medical world is warring over while we grow sicker by the day so, some of us wonder – are we losing our minds or dying, or both?
In the face of medical denial, the wounding of illness is magnified. Perhaps the worst part about having Lyme disease is that it is Lyme disease and not something else, equally horrific.
By the time we find a doctor willing to dig deeply for a diagnosis and offer treatment, we are exhausted, feeling increasingly isolated. More than a little stunned while also filled with hope, we forge ahead into treatment and recovery.
In my case, my husband (also stunned and hopeful) forged ahead right along with me, helping to navigate the minefield that is Lyme disease.
To say it was disorienting would be an understatement, and it was difficult to for me to fully appreciate my husband’s struggle. I unrealistically and desperately needed him to understand what was happening to me. I needed him to believe this disease was real.
Over time, this new normal terrified me and I ached for him to stay but was so afraid he wouldn’t. Was I at all like the girl he married way back in 1991?
There were times I would translate his inability to know exactly what I was going through as an unwillingness to walk in my shoes even though, in rational thought, I knew he would walk through fire in my shoes if it meant I wouldn’t have to wear them again.
Misinterpreting the code
I translated words that used to make me blush, like “you look beautiful,” as assaults on my credibility. “What did you do today?” was misinterpreted as code for did you even bother to leave the sofa this afternoon you lazy freeloading sloth?
In such upheaval, my view of everything was distorted through thick Lyme-green lenses. I was, at times, unreasonable and explosive towards him and our sons, which filled me with shame and a powerful need to protect them from me – the person who loved them more than life.
While it’s true that my sense of competence and security had been hit with substantial blows, it took some time for me to deeply recognize that my husband had absorbed some pretty big hits as well.
With the help of a therapist, I began observing our life together, seeing the whole surreal scene with all the players. I could see that even though I felt isolated, I wasn’t alone – my husband had been traveling alongside me the whole time.
My husband is my hero.
Not every relationship outlived my illness. I’ve given up trying to figure out why or how this happens, but the truth is we all carry burdens no one can see.
I grieve these losses, naturally, but no longer harbor ill will. Instead, I see our parting as an unavoidable consequence of circumstances, knowing that at any moment life may or may not bring us back together again. It’s out of my hands.
In some cases, the better option has been to re-envision important relationships, adjust expectations, and hope to preserve something precious still remaining.
But, where would we be without our heroes? Whether they drive us to appointments, decipher dosing schedules, catch us up on the latest gossip, offer treatment at their own professional peril, or just sit and sip tea now and then, those who stay are the unsung heroes of the Lyme Wars.
Donna Falcone was diagnosed with Lyme and other tick-borne diseases in 2008. She is illustrator of the children’s book, A is for Azure: the Alphabet in Colors, written by L.L. Barkat; contributor to Lyme INFECTED/INSPIRED: Lyme Disease Art Anthology by Christina Baggett; and, founder of The Brighter Side Blog. You can find Donna on Twitter as @poetryofLyme and her website: www.DonnaZFalcone.com