I have been trying to write a blog entry for three months. I have started three, maybe four. I have written some really great stuff – in my head. The problem is I have not been able to finish anything. It is as if there is a road block on the neuronal highway that connects my ability to think and type – or articulate clearly. There are days, sometimes weeks, that I live inside a bubble. I remain trapped and isolated inside my own head with thoughts racing a mile a minute. There are days I speak infrequently and can’t seem to construct written thoughts. I wonder, is this what autism feels like? I don’t want to talk to anyone. I don’t want to leave my home. I tremor, I seize. I grab things so I don’t collapse. I drop things, break things and bump into everything. My frustration level has skyrocketed because functioning at a basic level has been challenging. I have been treating this disease on and off (mostly on) since May 2013. There have been a few good months, but generally I really struggle and have been in a free fall since May.
Struggling with treatment is a misery I don’t wish on my worst enemy. Watching your child struggle is torture. Sadly, our illness has not been my only source of heartbreak. For the past two years, while my daughter and I schlep through life as zombies, I endured the collapse of my family of origin. An epic blow-out between my mother and sister has reduced us all to rubble. My dad passed a decade ago so he was spared from witnessing much of the madness to which he was a key contributor. I have managed to crawl out from beneath the pile of debris to assess the damage and whether there is anything salvageable about the situation. I’m coming up short. I guess it is good that zombies are “in” these days. That’s a plus.
There was a tremendous amount of stress and pain as the events of my family’s implosion unfolded. It completely destroyed my recovery. I’m angry about that. It is all I can do to keep myself functioning, and now I am navigating my mother through her most dramatic senior life change —alone. I’m pissed off and trying like hell to keep up this miserable fucking fight. So I will let it all go, because I have to, or else it will just eat away at me faster than the disease.
Given the state of my situation, I decided earlier this year it is time to start running through the bucket list. This summer my husband, daughter and I went on a Mediterranean cruise vacation. I cry thinking of just how amazing that experience was, and how deeply grateful I am to have the means to do it. We earned that trip. All three of us; because all our lives have been shot to hell for the past five years. Believe me, it was a financial stress. And, despite being in paradise, there were extremely low moments; including seizures, the ongoing heartbreak of being continuously mis-understood and my husband waking up on day two with a very clear EM rash on his back. Oh the meltdown we had.
I don’t need to explain anything to my fellow warriors about how greatly that spectacular journey set me back. I’m sure you could feel it just reading the words. I paused treatment two weeks before I left. I needed time to recover from the anemia side effect of Dapsone. From the moment I stopped taking all the pills, I began a four week binge of unhealthy choices. There was no way I was cruising through the mediterranean on a lyme diet. Sorry for the language, but FUCK THAT SHIT. I chose to live, rather than merely exist from June 29 – July 20th.
When our 11 day extravaganza came to an end, I found myself feeling resentful about having to go back home. I felt guilty for eating and drinking myself into an inflamed mess. I was frantic about my husband’s infection. I felt disgusted to return to a country that has been hijacked by moral bankruptcy, and facing a presidential race between Nope and Noper. I was drained both physically and emotionally. I was totally overwhelmed knowing I had to immediately hurl myself into the act of relocating my 81 year old mother into an Independent Living facility. I felt like I was like running head-on into a speeding train. I asked my sister to help me clean out the last bit of stuff from my mother’s house after she moved. I got an ice cold rejection. It was the emotional equivalent of being struck in the head with a bat. There is so much drama in my life that I wake up every night at 3:00 am in a hot sweat, wanting to hurl. Or maybe that is just the massive mother-*u*kin* herxheimer I’m enjoying? No matter how hard I try, I just can’t find even ground. Every moment of my life seems to nudge me toward the cliff of madness.
So now I am five weeks in to my third round of the experimental Dapsone, cocktail which I refer to as the Satan’s cocktail from the depths of hell. It includes Dapsone, Alinia, Omniicef, Minocyclin, Malarone, Nystatin, Leucovorin, stevia and supplements. Cannabis is the only thing that is getting me through the misery. It alleviates so many of the nasty symptoms. So essentially, I commit criminal activity daily in a desperate attempt to survive. I don’t know how much longer my body can sustain this beating. The thing is, my daughter is just turning 18 this November. I am not ready to let go of her or leave her behind. I infected her, so the least I can do is be here to help her as long as I’m able.
My daughter is so beautiful – inside and out.
Despite her health obstacles, she is focused, driven and successful. Her emotional intelligence and maturity is greater than most adults. But she is also very tired—very often. I know how this illness wears us down. I watched it destroy her figure skating career. (Below I shared a link to a video of when she performed at Rockefeller Center at the age of 10.) Since she is a high school senior, we are looking at colleges, but I’m sensing a hesitation in her search. The desire is there, as is the intellectual ability; provided she doesn’t flare. But this is causing some anxiety. Nobody knows her better than I do. We share the same disease. I know exactly what she will be up against at college. My daughter is not a partier. She is very selective about the company she keeps and likes her own space. I worry about her being able to manage dorm life and having no place to hide when the storm hits. I will support any choice she makes, but I do hope she chooses to be near home so I can rescue her on a moment’s notice: Or perhaps, so we can rescue each other.
So I fight to live this life the only way I’m able, which appears to be by criminally dancing on the fringes of insanity. There are days when the thought of opening e-mail makes me dive into my blanket fort of protection. Then there are days I send e-mails to Senator Cory Booker’s staff and tweet Governor Christ – a little pet name I have for him – in effort to get him to acknowledge that his state residents are being ravaged by tick infections. Bi-polar much? (I’m sorry Father, for I use thy name to speak evil. ) May I burn in purgatory. Oh, wait — I’m there now.
I am Alice staring up from the bottom of the rabbit hole called Lyme. I work as hard as I am able while I watch pieces of my life crumble to ashes around me. It is symbolic to finally pull it together enough to write this piece on the 15th anniversary of 9/11. On one of the worst days in America’s history, I sat with my two year old baby and watched in shock and horror as two of the world’s most iconic buildings collapsed on national television. I thought of the friends and neighbors that work in NYC, and remained glued, motionless, to the television. Our current daily horrors of Lyme pale in comparison to what happened to thousands of people from Manhattan and the surrounding communities on the day that changed the world profoundly. As I reflect it is as though Olivia and I watched a foreshadowing of our own simultaneous collapse that began in 2012.
I survive by having two missions. 1. Save my daughter’s future by fighting to fix this politicized mess of an epidemic. 2. Run through my bucket list, because there is no time like the present when your future is looking pretty sketchy. My goal is to have a Lyme fundraiser by the summer of 2017 and to run a stage production of Addy & Allie. This is what gives me the drive to continue dancing clumsily around the cliff of insanity. This is my crazy. I have no idea what makes me think I can actually accomplish any of this. But I can still try.
Here is a great song by Joan Osborne – a song I want to feature in Addy &Allie.