We are coming up on another anniversary. People who know are even beginning to ask. How long has it been now? Two years or three? And I have to admit that even I am surprised by the answer.
Four years.
Four, as a number, seems so innocuous and small. I have more digits on my right or left hand. Pick one. A four-pack of most grocery items feels like a rip-off, which is why I believe that just about everything- except tires and wieners- comes in multiples of six, instead.
Any mother will tell you, however, that the tantrum of the right four-year-old is proof of just how grand the number four can be. Have you ever tried to argue with a really angry four-year-old? Well, don’t. A Terrible Two wouldn’t have a chance against one of these guys. In the same amount of time that it takes to learn to walk and talk, graduate from high school or get a degree, families are built and torn apart. Monsters and mistakes are made and revealed, and some lives come undone or turn around. In terms of years, the number four can seem a lifetime.
So here we are, my husband- my No. 1[i] and only- and me- writer, care partner, part-time wardrobe stylist, and anxious mess- four years into life with Lyme disease. Weeks of treatments have turned to years, wreaking havoc through nearly half of our decade-long marriage and turning our vibrant, active selves into something that would seem unrecognizable in contrast.
I won’t get into the start of it all today. Our early thirties have been hell and our Lyme story, from beginning up until now, is long and complicated. Anyone who has ever lived with or taken care of a chronically ill friend or family member will remember the patience, fear, sadness, and love that goes into every day while that person waits to get better. Assuming better is even possible.
Suffice it to say that No. 1 was diagnosed in May of 2006 after four (There’s that number again.) months of losing our minds, not knowing. Four. Really. Long. Months. His first symptoms hit during our Valentine’s dinner date in February that same year, and our lives have not been the same since.
Without question, all things great and small are better. After more than 1,400 days and nights (and counting), we are luckier than many. No. 1’s energy and mood continue to improve and the neurological symptoms to diminish, though some days there still seems a long way to go. More tests are a given. We spend many moments clinging to the small signs of hope that health is returning: the re-growth of hair that thinned around his scalp before he had Lyme; an honest to goodness cold (rare in our world); a few clear-headed moments (even rarer); a bold laugh, deep in his chest; an evening out with friends and without any pain; or just a smile, free of sadness. It all matters.
Three years ago, when a lot of the world seemed lost to me, I went back to my journals and wrote. In the darkness, I tried to find some kind of light in my day, and often it was the hours I spent with words that offered me the most comfort. I wrote to empty myself and read to refill what was gone. A self-proclaimed, optimistic manic-depressive, I gorged myself on stories of emotional and physical survival like The Road by Cormac McCarthy, The Year of Magical Thinking by Joan Didion, Eat, Pray, Love by Elizabeth Gilbert, and The Glass Castle by Jeanette Walls. I was awed by and grateful for the people and characters brave enough to tell their tales, bringing me into their private, painful worlds. Throughout the more chaotic periods of my life, stories of courage in the face of solitude always had the unique ability to make me braver, make me feel that I am not always so alone. It was this gratitude more recently that shaped my decision to stop writing only for myself and be a writer.
My life is full of stories. My gypsy parents made sure of that. My sister and I spent our childhoods aware that change was the only constant. Fourteen schools across Southern California and one in Montreal, Quebec, Canada– from Kindergarten through twelfth grades- have held registration cards in my name. I think my parents figured, should I live to tell the tale, I would have plenty to tell. The chaos was all part of the adventure.
But here I find myself, living in the sweet, sunny foothills of the California coastline, where things have remained maddeningly the same. Little changes are everything in the fight against Lyme, and years can be spent making miniscule adjustments to treatments- adding or removing one element at a time to be certain of what is or isn’t working. The pace can make you crazy.
Diagnosis was tricky, too. Somewhere in our backyard, during a yearlong retaining wall project, my engineering, hardworking husband was host to a miniscule tick that no one ever saw. In the bite of that blood-sucking fiend, a bacterial infection ensued that no one believed could happen in this region of the country. Doctors shook their heads and shrugged their shoulders for months while tiny, invisible dancers twirled their way into my husband’s brain. One recommended he drink more water for his swollen lymph nodes to clear a possible sinus infection. And, four years later, many doctors would continue being about as helpful as a chopstick in yogurt if not for a combination of research, luck, and sheer tenacity. But then, we are reminded often of how fortunate we were to get a diagnosis for my husband at all. Some wait decades. Advocates for people who can’t seem to find a reason behind their deteriorated health are few and far between, and insurance companies are hardly leaping up to cover the bill.
If the medical community struggles to respond to people with chronic Lyme disease where does that leave the rest of the world? Once a diagnosis is found, it’s hard to tell if and when things are getting better. How should a patient plan his life when symptoms come and go and relief doesn’t exist? Where does the joy come from when you suffer the debilitating pain of a Mack truck crushing your head and joints? When a person can’t sleep, can they be expected to dream?
Spouses and other family and friends are left to scoop out the husks of the souls they once knew and make do. Many relationships fade. Without the energy to perform socially, the sick let their friendships fail without much of a fight. Tired of having calls unreturned and invitations refused, people stop calling. Perhaps they are disturbing the patient. Perhaps they’re unwanted. And not even the patient is sure because he loves you and hates you for your kind words and your life that goes on without him.
Life lived with chronic disease, if it’s bad enough, can be its own kind of purgatory. To go back and remove the experience is impossible, and to move forward requires health. The old saying without your health, you have nothing can seem like the only true words ever spoken to a sick person. And the longer that remains true, the harder it is to see what you do have. This has absolutely been the truth for No. 1 and I as we’ve clawed our way back to this level of physical, psychological, and emotional health. Usually, while one of us is feeling low, the other has taken the reins, usually providing enough support to slingshot the other out of the resulting depression that comes with long-term illness. But not always. Sometimes what we go through is just hard, and we can only hope for time to pass quickly until something changes.
But if anything else is true in this world, even when it’s slow and seemingly invisible, it really is that change is the only constant. I’m starting to see that now. Anything that seems unchanging can only remain as such for so long. Even the mighty, purple mountains fall, and our lives are not nearly so unmovable. No. 1 and I will eventually heal from this mess, and our lives, through small stages of recovery, will continue to improve, however slow that may be.
But here’s the thing. Change has been coming at much too slow a pace for far too long. For seven years now, No. 1’s been driving the long forty-five minute commute to and from work, from Ventura to Goleta. Four out of seven of those years, With the determination of a soldier on the march, he has shouldered Lyme like a pack he only takes off at night. Ignoring the 100 lb. weight on his back, he keeps moving, not thinking about the strain until he can make it back to camp and rest. Somehow, he has managed to keep us in our house and off of disability. When all this started, we were told disability was not an option for us anyway (believe me, we asked), but it is because of him that we have all that we have. Yes, he is amazing, I know. And it’s high time he was cut a break.
With that in mind, I’ve been doing some research. For the first time since we realized we were stuck living in Ventura, it may be possible to leave. Basically, since we left, we’ve been dying to get back to our old digs in Santa Barbara (a quick ten minutes from work for No. 1). Heaven on Earth, the American Riviera, whatever you want to call it, we’re ready to call it home again, and I’m ready to make it happen. I would give anything to give him the extra time to rest. It’s just a better location for us, overall. But we have some moderate construction left to do on the house and a pages-long list of handyman-type repairs that need fixing before we can rent out our home and move. Many times, it’s difficult for us to be motivated to do easy things on a good day. But after discussing it, we are more determined to move than ever. I refuse to believe (and I always have) that better is not possible, and moving to a more sustaining environment can only help to make that happen faster. I have decided I will do whatever it takes, if it means learning how to wire electricity and hang drywall myself, to get out of here.
I mean to see the end of this war. This is one anniversary I’d like to stop having. Four years is long enough. Let’s get on with this thing.
[i] The name for my husband, No. 1, was given in reference to a) the fact that we never, and I mean never, call each other by our given names, b) one of my husband’s favorite television shows, and c) something my mom said on my wedding day that was supposed to comfort me before she walked me down the aisle but ultimately reminds me of how many husbands I’m aiming for in this life.
Hold On To This 