The "L" Word - Whatever the disease is, it’s not an identity – it’s a dive out of an airplane. Laissez-faire.

The "L" Word

I don’t know when I got bit.  I suppose I can point to multiple times in childhood, spending summers in the woods, barefoot and free. We didn’t think anything of it.  Most of my adult life was also spent living in the country, heating a house with wood.  No one thought anything of it, least of all me.

But at some point the bite from a tick – somewhere, sometime, turned into a life-altering story. So many people out there have a similar story. But this is mine. Just after diagnosis, I joined some discussion boards with people who had Lyme disease and I kept thinking, “This just can’t be.  This is just not me. This can’t be right.”  It was very Twilight-zone ‘esque’.  But, they were right and my story became part of the collective of Lyme disease. The dreaded ‘L’ word.

I knew I was not well.  I knew something was wrong.  I kept pushing past all of the symptoms, kept up my usual life pace, thinking, “I’m the medical professional here.  I’ll figure this out myself.”  In some ways, I did.  I blamed everything on my hormones. Which was not too far off the target since I had suffered for years with PMS, Endometriosis, and fibroids.  I was coming up on 40 years old and all of the women in my family had the same history. It didn’t explain some things, however; like the constant tremor in my muscles, the feeling that I needed to run away from something all the time.  When the migraines set in, I acquiesced to needing a doctor. One day I may share every detail of how I came about to find this particular OB/GYN, but it’s enough to say that it was a sheer miracle.  He was sent from God. There is no other way to describe it.  I underwent a hysterectomy in February of 2009.  I was relieved. I was happy and believed I would be restoring my health, and getting my life back.  But 6 weeks after surgery, I was coming up on having to go back to work and I couldn’t walk across my house, let alone do a 12 hr shift with high acuity patients.  This wasn’t ordinary ‘being sick’ weakness like with the flu or strep throat.  This was paralyzing, debilitating, muscle, brain, and physical weakness that I could not do anything about. There was no pushing past this. I experienced migraines so bad that I was blinded, and the vertigo made it impossible to stand up straight.  I was frightened and distressed because my job was waiting, my family needed the income, and I could not hold my head up.  My OB/GYN was the one who diagnosed me.  He was looking for everything he could: autoimmune diseases, thyroid issues, Epstein-Barre, Guillian-Barre. “Spaghetti medicine” is what he called it.  It’s where you throw everything on the wall and see if something sticks. Out of sheer inspiration from God, he chose to test me for Lyme disease.  And it stuck on the wall.

But Lyme disease is not as straightforward as getting a diagnosis.  It’s a very controversial and hotly debated subject in western medicine.  Even now. People suffer and they can’t get help, and that is the reality. Most discussions about Lyme disease argue over whether or not the problems exist after a short course of Doxycycline. And few doctors will even touch it because those who try to step up and help are taken into court and prosecuted; and run the risk of losing their license.  It’s a game most will not play.  So, when you go about finding a doctor and help with this diagnosis, you have to “pretend” to have other diseases.  I was fortunate enough to find an infectious disease doctor that was at least willing to make an attempt.  I went through 3 rounds of IV antibiotics, and one round of an antiparasitic.  But beyond that she wasn’t willing to entertain the notion that I would need more than that, AND she began talking to me about antidepressants.  Which I took to mean that she thought it was all in my head.  I wanted to fight. I wanted to get better, I was trying to get mobile. But it wasn’t happening. Through a support group I found out how to get in to see a doctor close to me that would treat Lyme disease.  I had to make the appointment by saying I had fibromyalgia.  It felt like I was going undercover on a spy mission. But she at least validated that this wasn’t in my head.  I had Lyme disease, and babesiosis, and I wasn’t pretending.

I did eventually end up back at work, but when you are using the break room to hang IVs on yourself, in between hanging them on others; well, it’s not something you can keep up with. People look at you with a raised eyebrow.  And yet I tried.  I convinced myself that I could beat this, I could manage everything I had always done and I would NOT be a statistic on a discussion board.  Until one day I was asked to resign.  I’ve never been so beaten, so defeated.  I had failed.  I had let Lyme disease take me out, like it had done so many other people. My whole world fell apart.

I had an illness that was making me less and less human all the time. My brain was so foggy most of the time that I didn’t process things correctly.  It took me a long time to make decisions.  I was on the paranoid side of things, making irrational assumptions and having the wrong emotions for situations.  If I did anything strenuous, I would pay for it for days because I was in pain and the fatigue made it impossible for me to move.  I cut everything out of my life that was not vital.  And the only thing vital was my family, and my religious practice, but even that was hard. I would attend church, but I would sit in the pew in agony and I felt like an empty shell, my physical body was sitting there but there was nothing inside it. I heard nothing, felt nothing, and spoke to almost no one. I left the doctor’s office one day and got lost going home. I called my husband in a panic because I didn’t recognize anything. I didn’t have any clue where I was, and only a flip phone to connect with reality. I had driven too far south on a highway and when things got unfamiliar, my diseased brain turned it into an episode of The Twilight Zone. I didn’t really go anywhere alone after that.

One of the worst things was the hypothermia.  I was morbidly cold, all the time. I would lay in bed, covered with blankets, and would still feel like there was a pocket of cold air surrounding my body and blowing on me.  If I went to the store, I carried a coat with me and wore it – even in the Texas summer heat.  If I was in the store too long, the temperature in the store would shut my brain down to the point that I would just stop and stare at the shelves; completely forgetting what I was doing, and what I was getting.  My son would just take me by the arm and get me out.

I don’t know exactly how I came to this pivotal moment.  I suppose it was divine intervention.  But I remember that I just let go.  Up until that point I had this white-knuckle grip on my life, my circumstances, my disease, my family, even my nonexistent job, and the tighter I squeezed, the more my grip slipped.  So, I let go.  I decided that if this was now my path in life, then it is what it is.  I don’t have control, and I never did.  If I’m meant to live out my life with these circumstances, I will just let it be so. The French have a phrase for it – ‘laissez-faire’. I guess you could say it became my new ‘L’ word. In a lot of ways, it was a relief.  I didn’t expect myself to be anything more than where I was that day. I didn’t volunteer to do things I couldn’t do. I didn’t worry about the housework, the yard work; I didn’t participate unless I was in a place I could, and only if I really wanted to. I focused on the things that I loved dearly; my family, my faith, and my herb books.  I found solace in study and research. And when I let go, I also opened up. It freed me to start seeing things from a different perspective, it freed me to be able to see the possibilities. The windows began opening and the light started pouring in.  I found my plant allies, (Pokeroot) the ones who showed up and made themselves known so I would know how to use them to get well.  I found other ways of thinking, other lines of spirituality. I found more joy in my scriptures because the mysteries of God began unfolding.

I began to discover that it wasn’t just about taking some herbs or an antibiotic and getting well.  It wasn’t about getting physically able to make things just go back the way they were. I couldn’t get my house back. I couldn’t go back to work.  But it wasn’t about that. There was so much of me, the real me, that was tied up in this process.  If I ignored those changes and I ignored the process that involved ALL of me, then I would never be well.  I would remain forever trapped in a loop of the ‘diseased’ and I couldn’t live there.  Even if I never regained the physical ability or mental capacity, I knew I could not live in that place. That place was full of fear and anxiety and in that place I was a victim and would forever be; letting the medical conspiracies define help. I had to let go of any notion of who I thought I was, everything I had tied identity to, and every false belief I ever held.  I LET GO.

They say that once you jump out of the plane and begin free falling that the fear leaves. Will Smith said, “God placed all of the best things in life on the other side of terror.”  My fear had been, if I let go of all the things I know, everything I thought about who I was, what then?  The unknown.  But in the unknown, I found the best things in my life.  I don’t mind talking about Lyme disease, or even saying that I had it. I’ll even help you with yours. But I won’t join you in the place where fear and darkness remain.  Let’s talk about the “L” word, or any other life-altering thing you want, as the door of that plane. Let go.

I’m well. That isn’t to say that things went back to ‘normal’. That isn’t what healed looks like.  I’m well, and cured of Lyme disease. Being healed means that I changed – physically, mentally, emotionally, and spiritually.  Those changes are necessary if you’re going to ever feel the exuberance of what it means when you truly let go.

But what did I “DO”?  I can hear you ask.  I did a lot of research and study and I did what was right for me.  That meant that I acted out of inspiration from all aspects of the process. I took ownership of the leap. I sat in an infrared sauna every day for 3 months, – and still do on occasion – to give myself a fever. I changed my diet – cut out the sugar and the carbs. I took my herbal mixture religiously and never failed to take care of myself when needed. My many years and countless hours of study led me to wonderful plant allies that gave me my life back.  I learned how to meditate, how to find the missing pieces of spiritual practice that became vital to restoring my spirit. When I started to feel better, I began the process of rehabilitation – restoring the muscle mass I had lost. I’m still pursuing the next level of ‘healed’.  I found support and help every step of the way – not because I was ‘fighting’ the disease but because I had let go.

Whatever the disease is, it’s not an identity – it’s a dive out of an airplane.  Laissez-faire.