The internet is a safe haven for people to act nasty, but it is also representative of cultural opinion at large. Based on this knowledge, I am extraordinarily dismayed that with all the PSA’s for Lyme Disease and new info circulating around it, it still doesn’t “count” as a serious illness to many people.
Of course all the details about my late stage neurological Lyme, like how I had fibromyalgia so bad I couldn’t move my limbs for a spell, were cut from Chopped, and the CO poisoning was played up because it made me look insane that a stove tried to kill me. The reactions from people, though, were still shocking: I didn’t have cancer, how could I call myself a survivor? My illnesses didn’t compare to cancer. The other two contestants had cancer, and I need to GET OVER MYSELF. Never mind that my CO poisoning– which I have very real blood work and medical records from, just like my Lyme– involved a diagnosis of Alzheimer’s by a Cedars Sinai neurologist, and the gas killed my ex’s cat, it was considered “trite” compared to cancer.
Lyme disease has a tendency to keep people laid up for years, and many simply never get well. There is no “cure,” only methods of treatment that very thankfully work for some, like me. My family and I did intensive research to find holistic treatments for both my illnesses when they each occurred, and thankfully, I successfully moved past both. My mom had cancer, and was mortified when I told her yesterday about people’s statements of my illnesses being “nothing” compared. Pain and suffering are pain and suffering, and one thing that can kill you is no less bad than another thing that can kill you.
There is simply no need, ever, to compare illnesses and minimize the suffering of others. People used the hashtag “#killerstoves” to mock my experience as minimal compared to cancer. Some even said there is no way it happened, because I’d be dead, which is clearly untrue: the ventilation problem was real, and was fixed by real HVAC people. The exposure was slow and low and not detectable on an alarm designed to only detect life threatening levels. It left me with a huge array of brain damage related troubles, all of which I have recovered from fully via holistic methods. (And most definitely NOT only with avocados, that was some fun editing.)
Our culture is rife with judgment, and social media fuels our ability to depersonalize others. We are all critics from our couches. I write this not to say I feel I was perceived unfairly (that’s a whole different blog!), but to ask people to realize that being laid up for years is a nightmare, whether or not one is sick with cancer. Period.
I’m a firm believer that everything that happens in life has a purpose. One of my favorite lines is, “If it was meant to happen any other way, it would have.” Inasmuch as I believe this, finding the reason for life’s occurrences can be quite the serious challenge. When we first found out last month about the situation in our home and began to put all our sickness pieces together into a puzzle of assorted chemical exposures, I could not for the life of me understand why, after less than a year of wellness, I was stuck being sick again- and sick in as serious a way as Lyme disease, if not more so. It was impossible for me to jump out of victim mentality as the shock began to settle, and, “Why me, why us?” was the main thought in my mind. I mean, really- I spend my life eating clean, organic foods, using natural cleaners, not drinking out of plastic bottles, etc., just so I can get slowly gassed and poisoned in my own home for months on end?
Once we began to try and sort all this out by going to various doctors, setting up treatments, and consulting with a lawyer, I steadfastly grew more depressed. The unfairness of it all was so overwhelming. Our cat- Ace’s baby and love- was gone, my brain is shot, I’ve been in pain all year, Ace has “seasonal allergies” no matter what the season… our list of symptoms is literally pages long, and it’s a lot to digest. The notion that some of my brain damage may be permanent was horrifying news, and the ten hours of neuro-psych testing I did was far from the easy experience it would have been before all this. I continued asking, “Why?” as I worried about ever getting better, instead of listening to everyone who told us how lucky we were to be alive.
It finally dawned on me that the only thing I hadn’t done after recovering from Lyme was document my story, which numerous people had both suggested and requested. When I realized I could do that now, and write a broader story about surviving not just Lyme disease but also carbon monoxide and assorted chemical poisonings, it struck a strong chord in me. This is my path. I am passionate about healthy food and wellness and constructed a business based on the model of feeding people healthy snacks they would be able to eat without even realizing the nutrition benefits of.
I am going to write a book about how to be well, even when you’re not. As soon as I decided this, I began to feel hopeful. While my physical symptoms have yet to lessen at all even though I’m about a dozen sessions into hyperbaric oxygen treatment, this decision lifted a good bit of my depression cloud. I was reminded of “Yo Pal” Hal Elrod, someone I greatly admire. He is an RnR customer who overcame a vehicular accident that technically killed him for a few minutes. Due to his “attitude of gratitude” and strong will, he recovered at an alarming speed. His bones and brain literally healed faster than doctors said was possible because he decided that he was going to get well. Now he is a motivational speaker (and excellent writer) who empowers others to live their lives to the fullest.
Writing a book makes perfect sense given that I have a degree in writing, but is daunting to me because so many parts of my brain feel broken nowadays. I’ve decided to take this on as my summer project, as a reason to get out of the house daily even if I don’t have the memory and learning skills to go back to work anytime soon. Once my neuro-psych report is completed, I’ll find out what treatments are going to be involved to help my mind recover. I do have a feeling that some aspects of the brain damage are going to be deemed untreatable, but I will still be taught how to work with them. As someone who has always been very proud of her intellect, this entire experience has been devastating, and the idea that I may never be as smart as I was before is very hard to stomach. But one important part of life that I learned from Lyme is this: we are never, ever going to be who we used to be again. Thinking, “I want my old life back,” is insane, because no matter whether you’re sick or not, life is change. You’ll never be who you were before, no matter what. I just want to be the best new version of myself I can be. All I can ask of the world is help in becoming that.
To say, “Thank you,” to those who have stood by me- or, more like, propped me up completely- lately feels very trite, but it’s the best I’ve got right now. So thank you, to my family, to my friends, to the hyperbaric technicians who don’t pressurize the chamber too fast because my ears are sensitive, to customers in stores who don’t get freaked out when I stare at blankly at them for long periods of time while trying to remember what I needed from that aisle, and of course to Ace (who also counts in the family section), for continuously insisting that no matter what, we are going to get well. And thank you to the forces that be that I am still alive and here to embark on yet another healing journey.
Mondays descend on me leaden heavy. The time returns to keep track of myself, or at least
The weekends are the reprieve, there is company constantly.
I know I am difficult, regardless of how I try to not be: difficult to communicate with:
Not understanding, not understood.
In the moments when I manage to be fully present, I wonder what it is like
to have chosen someone so different
From the one you chose.
I am trying so hard to heal.
I am trying to not fight my body, I am trying to not wage war with
this unending pain, this deafening confusion.
I am trying to believe, and to feel, that I will be fine.
I am trying to be grateful that I am alive, that at least most of our family survived this.
I keep thanking my elbows, the only joints that do not feel like they are being pulled away from me
by some unknown evil force.
I keep begging every other joint to take heed.
I keep begging my head to just stop aching.
I am trying to find the lesson, the message.
I am trying so hard to heal.
There is no question that I believe in positivity.
There is no question that I have healed before, and damn well at that.
I don’t know why this is so much harder;
I just know that most of the time now,
I do not know much of what I knew before.
I exist in a hazy tunnel with walls made of fog,
and every time I awake from a daydream
I cannot recall a single thought of it.
Mondays descend on me leaden heavy.
I am off to be encapsulated in oxygen.
I am off to try again.
Note: Acute carbon monoxide poisoning = getting exposed to a high level of CO and passing out or vomiting or whatever quickly, and chronic poisoning indicates a smaller dose of exposure over a prolonged period of time (in our case, six months for sure, and potentially up to eleven more at our old place across the hall).
Also note: this is a very serious issue, and I spend a lot of time on the verge of tears. I’m not making light of anything that has happened, but rather, trying to use humor and sarcasm as a coping mechanism so I don’t go even crazier than I already am.
1. While acute poisoning is totally “normal,” chronic CO poisoning is considered “controversial,” and you have to fight for treatment. That makes not one, but TWO controversial illnesses I’ve had in recent years! Remember: it doesn’t matter what they say. As long as they’re talking about you, that’s what counts. I’ve always loved controversy, even if it is only with my insurance provider right now.
2. My musical tastes have been opened up. While my inner feminist would never have been able to look past Eminem’s grossly offensive lyrics, said inner feminist is in a bit of an intellectual coma these days, and poisoned me has been spending months having a passionate musical relationship with Eminem. I love his voice, his intonations, his lack of caring what others think of him, and his catchy beats.
3. I’m a fucking survivor, yet again. Now, at the tender age of 34, I have survived everything from devirginizing teenage date rape to a disease many people never recover from to six months of freaking chemical POISONING. And those are just the things I’m willing to share publicly!
4. Hyperbaric oxygen chambers. If you thought of Michael Jackson when I said those words, you thought correctly. They are the treatment for CO poisoning (both acute and chronic), and starting Monday, I get to spend 1.5 hours a day, five days a week, for 30-50 sessions being cool like him. Besides him being dead, the King of Pop, and likely a child molester, Michael Jackson and I are pretty much the same. How cool is that?
5. I do not ever say, “Damn you auto-correct!” like everyone else does. As someone who only remembers her name these days because she has to pronounce it so often for people who can’t comprehend ARE-ee-en, my spelling has gone way downhill in recent months, and if it weren’t for auto-correct, I probably just wouldn’t be able to text or write at all. Then where would I be? Stuck actually TALKING to people? Right. Because I’m super talented at THAT, lately, too.
6. As soon as I don’t have a headache anymore, I am going to be SO SO SO SO SO SO SO SO SO SO SO SO SO SO SO SO SO SO excited to not have a headache anymore. I’ve had a nonstop headache for four, maybe five months now. Are YOU excited to not have a headache? I didn’t think so. You just take it for granted. You probably couldn’t even care less that you don’t have a headache. But I, I am going to be REALLY REALLY REALLY REALLY REALLY REALLY REALLY REALLY REALLY REALLY thrilled whenever the big giant who has been squeezing my head all year loosens his grip. And there is little more that one can ask for than to have things to be thrilled about.
7. After the Lyme, I was a very grateful person. I felt full of love and cherished every step I took without pain, every clear thought I had, every time I put on a small-size pair of pants and they fit. Now I will be infinitely more filled with gratitude when I get all that back… again.
8. I am learning how to cope with decisions you can’t reverse. Ever since we found out what happened in here, the issue of Bill dying has been more traumatic than ever. While I don’t tend to say it, the wish that we hadn’t moved across the hall into what seemed like a dream of a three bedroom apartment has been eating away at me. Ace mentions it regularly, and I tell her to not feel guilty, we didn’t know, we can’t change anything. Inside, though, I feel that same guilt, as well as the guilt of saying, “I’m sure everything is fine,” every time Ace said that something smelled funny in here. I can’t go back. I can’t say, “You know what, I can’t really smell it like you can, but we need to figure out how to get this fixed RIGHT NOW before anyone dies.” That is so hard to live with. And I have no choice but to figure out how to live with it, and to forgive myself because the best we can do in life is the best we can do. We were already months into being poisoned, my decision making skills had plummeted, and I never fathomed that we could be getting gassed on the daily in our own home.
9. My suddenly poor math skills are understandable now, so it shouldn’t be a big deal when I say that in my head, I totally had ten good reasons thought out. But I’m all out of them.
10. See number nine. This was the best I could do. I hope I figure out how to stop wishing we never moved here, I hope Ace recovers fully, I hope my headache stops and my joint pain lessens and I stop getting my period every six weeks with PMS for three of those weeks and every other symptom I can’t remember without referencing the paper I wrote them all on goes away too, and I hope that if anyone else is ever in this situation, they speak up, as loudly as they can, as soon as they can, and they DEMAND that no stone be left unturned until their home is returned to the 100% clean habitable environment that EVERYONE deserves.
I guess I failed at staying humorous, and got a little political there. Maybe my inner feminist will make it out of her coma eventually after all.