“Warriors.” The term is used for Chronic Lyme[1] Patients – it is fitting. If you have Chronic Lyme your mission will be extremely difficult, potentially deadly, and will require mental and physical fortitude in the minefield of health exploration and misdiagnoses, with an often uncaring, misinformed, antagonistic medical establishment, and with obliterated resources as “out-of-pocket” seesaws with “out-of-luck.” Hanging in the balance is your life, and your sanity.
Without exaggeration, it will be an epic battle. You will be required to do your own recon, craft your own escape, face long term isolation, and witness and endure constant physical and mental suffering. If you are the Caretaker of a Chronic Lyme Patient, this is your life-prognosis as well, without the first-hand physical effects but with added responsibility. You too will need to be a Warrior. And while you’re not the immediately wounded one, your role will be to carry them (and yourself) through it. It will be largely on you to get the team to safety. It is on the afflicted teammate to stay alive. Be prepared to be pushed to your breaking point. In fact, be prepared to live at your breaking point, potentially for years.
Your life, whether you have Lyme or are a Lyme Caretaker will have two distinct phases: Life Before Lyme, and Life With Lyme. The drastic difference between the two is striking, haunting, and ironically, Amazing. Your love, care, and commitment will be tested, and evidenced, with a clarity and duration rarely required in the “normal” scope of life or relationships. Where there is great hardship, there will co-exist great friendship. Where there are great challenges, there are great achievements. The odds will be against you, heavily, for a long time. Mentally, you will have to come to terms with it all, and find some sanity in the tugging pressures of selfless-caretaking and self-preservation. If you go down, they go down - so you need to tap into your inner strength and resilience.
There are a handful of quotes I use to help myself through it. Most are military or adventuring in nature, as they are the only parallels that seem to resonate with my personal journey as a Lyme Caretaker. Focusing on the Caretaker role is in no way meant to diminish or neglect the Chronic Lyme Patient’s experience – that experience is unequivocally the more difficult of the two. The goal here is to offer some camaraderie to those who voluntarily shoulder the Lyme Life, for the sake of their loved ones. If you are in the same position as I am, there was no boot camp or any formal training prior to your fight against Lyme. It’s written as advice, but it’s only the advice I’ve been giving myself for the past four years.
“Leave no man (or woman) behind.” – Army Rangers, Marines, militaries throughout history.
This will mean something very deep to you going forward. Your Lyme Warrior is worth the fight, whatever the stakes, whatever it takes. They would do the same for you. The bond is absolute. It will be tested for sure, but as it holds, day after day, week after week, year after year, it will be the source of your collective strength, and the source of your pride. Your identity as an individual (and as a couple) will literally be hammered into a whole new form, with pieces of the old you visible alongside the new shapes and features of the new reality. As things get harder, you’ll get better, if not immediately, surely eventually. Similarly, “Under pressure, you don’t rise to the occasion, you sink to the level of your training.” The grind will both weaken and strengthen you, in waves, with ups and downs, but always moving forward. Cut one another slack, but never forget the commitment. The way out is together.
“Know your enemy.” – Sun Tzu, Art of War.
If you’re not currently a Lyme expert, you will be. If you hated science class in school, it won’t make a drop of difference. If you weren’t a nerd, you’re about to become one. Western medicine is awesome for many ailments. It is pathetic for Chronic Lyme. Be prepared to learn. Keep an open mind. Be prepared to become a nurse, a research assistant, a 911 operator, a lab rat, a masseuse, a medic, a meditator, a mediator, a health advocate, a lawyer, a pharmacist, a nutritionist, herbalist, and an amateur psychologist. The many hats of the Lyme Caretaker and Patient could fill another article (or book), but the gist is this: be prepared to learn. The more you know about Lyme and every co-infection and supplement and medication, the better off you and your patient will be. In my case, my patient is the greatest student of this disease I’ve ever seen – she has earned her doctorate in Lyme and tick-borne disease first-hand, in spite of the devastating physical effects, with an active and unflinching quest for answers.
“The happiness of your life depends on the quality of your thoughts.” – Marcus Aurelius, Meditations.
Do your best to keep things positive, or at least with a true current understanding and forward-looking perspective. Put another way: “Embrace the suck.” Whether you are a Marine or a Buddhist, you’re tapped into the idea that denying your reality will only cause more suffering. Life is different now. Don’t look at Friday nights with sorrow. Yes, you’re not headed to the bar after work with friends, your sex life is non-existent, you used to be super active but are now relegated to many couch hours of companionship.. You could list all the life changes, experiences foregone or on hold, and drown in your own self-pity. Don’t do it. For your own sake, and for your patient’s. There is something greater going on. Instead of focusing on what’s not happening, focus on what is happening. You’re in a loving relationship that far exceeds any previous commitment you’ve ever made. You have the love and affection of someone you respect and cherish far beyond the sacrifices required. If you’re like us, you will still have laughs, in the face of it all, with a gallows humor that often defeats overwhelming despair. You may find you like Dancing With The Stars as much as Football. You will find that your preferred company remains the same. Before Lyme or With Lyme, your partner rings true. You will find an abundance of inside jokes, cropping up daily, in spite of the huge weight on you both. Be grateful for your time here, and theirs, and importantly, the time together. Be bigger than what bites.
“Where there’s a will, there’s a way.” – Proverb, Shakespeare, History..
Don’t give up. Perseverance and Endurance are everything. As Ernest Shackleton said, “If I had not some strength of will, I would make a first-class drunkard.” Running away is unacceptable. Stress, responsibility, unhappiness, all will be overwhelming at some point, and it will test you to the core. Fear is acceptable, but cowardice is not. Your actions will tell the story of your commitment and character. It takes significant and sustained will power to stay in the fight. The Lyme Patient knows this deeply. The Lyme Caretaker must know this as well. Shackleton said, “Difficulties are just things to overcome, after all.” There’s truth in the simplicity. Whether you’re stuck in the Arctic ice or stuck in Lyme treatment, your Will will be tested. Lyme Patients and Lyme Caretakers frequently feel helpless, but our collective actions are our power, our freedom, and are within our control.
The Caretaker’s Mission doesn’t get a ton of press. As our Lyme Specialist says, “We are co-creators of our own existence.” I hope this post offers some brothers-in-arms familiarity, communal perspective, and empathy for everyone out there putting up a Warrior’s effort, whether you’re a Lyme Caretaker or a Lyme Patient, you have all of my admiration and respect.
- Matt & Laura
[1] By Chronic Lyme, in our direct experience, we mean the following infections/co-infections/conditions: Lyme Disease, Bartonella, Babesia, Mycoplasma Pneumonia, Legionnaire’s Disease, Depression, Anxiety, POTS, chronic musculoskeletal and nerve pain, cognitive and neurological complications, immune system degradation, leaky gut, adrenal/hormone and endocrine system complications
