On Morgellon's Disease
On cyberstalking my mother after her death.
TW: SELF HARM
Spent the afternoon going through the archive of my mom's Facebook page and tracking her rapid decent into total madness prior to her death. In January of 2018 she joined Facebook groups related to something called Morgellon's Disease that she became convinced that she had, after originally thinking she had Lyme's disease. From there she began identifying with the diagnosis of Morgellon's more and more, posting photos in comments of things that she had 'detoxed' out of the skin of her body, sharing which essential oils will "pull the demons" out of someone's body, posting protocols for bathing in hydrogen peroxide and using it internally.
Those with Morgellon's Disease believe that there are 'fibers' coming out of their skin, and that they got there from chemtrails that the government is using the spread their mind-controlling nanotechnology disease. They believe that these fibers may be inorganic life forms that are used to control the populace. The theories of what exactly it does and how exactly it manifests are many and range wildly–symptoms range from crawling sensations, sores and wounds erupting in the skin, hair loss, Lyme-like symptoms such as fatigue and anaemia. There's a great but very disturbing article in Harper's called The Devil's Bait by Leslie Jamison that explains more about Morgellon's Disease, as well as this New Yorker bit that mentions it in relation to a documentary by Penny Lane called The Pain of Others which I have yet to inflict upon myself.
Suffice to say, Morgellon's Disease (MD) is widely recognised by medical professionals as 'delusions of parasitosis,' which is a cute way to say: crazy imagines parasites. Many, many doctors tried alongside me to get my mother help for her mental health conditions, and it was not a new suggestion either. My mother had untreated mental health issues for as long as I've been alive. She was also a completely, wholly denying alcoholic.
It became easier for my mother to explain her symptoms with MD rather than accept that her daily wine habit was killing her more quickly then than it ever had. She obsessively picked at her skin, I don't know if there was ever anything there but skin, her phone's camera roll was completely filled with selfies she had taken with blood dripping down her face and limbs, blobs of black blood clots that she coughed up into the sink, wounds fresh and scabbed over. It is shocking to me even now, nearly six years later, to see these images that so clearly show a woman in self-destruct mode.
I had to cut off contact with my mother many times in my life to protect myself and my budding family from the poisons of her apathy and denial. So I was not privy to the Facebook posts that she would make and delete to garner attention to her health from her collection of lifetime friends. I had that bitch blocked, but still she cyber-stalked me, which I found out after she died and I went through her Google search results. With the combination of the Facebook data, her photos, and her search history, I can clearly trace her descent into madness.
It's ironic of course, that I am cyber-stalking my dead mom and violating any privacy she may have had after her death. But that's all I have. I didn't get to have some reconciliation with her because she was unconscious when I got there to watch her die over days. I didn't get any answers about why she chose drinking wine over meeting her only Grandson. I didn't get a last-second apology from her for the torture that she had inflicted on me over my lifetime. All I got was an outdated will and unfettered access to her electronic devices, from which I have mined a narrative that unfurls in janky spurts from a digital wake.
I am working on a book about my mother's death, I guess we are calling it a memoir now, because it's not fiction, that's for sure. I don't know a lot about memoirs as an art form but Rachel shared a great memoir-focused Substack with me today called Memoir Land which should be helpful to read. It feels essential to me that the book reflect the disjointed nature of my memories of my mother, which come to me in what I can only describe as 'flashbacks.' I spent yesterday with Post-It's trying to lay out the narrative arc of the story, spawning from when my mother lost her job of over 20 years through her death in 2019. But the stories themselves will likely be out of order, because that is how I remember them. It also feels essential to me that I can keep some of the Facebook-ness of the world in the story, through photos and messages and posts and comments.
I took screenshots today of every message in every group my mother frequented for colloidal silver recipes and armchair diagnosis that she made. I went through years of messages and posts and noticed that she was so overwhelmingly positive with everyone in the world but me. Her Facebook is rife with supportive messages, remembrances, and notes to her friends. My photo album is littered with screenshots of nasty texts that she would send to me, and some of the screenshot are of messages that I wrote to her but could not send. Too real. Too affronting. But there are also screenshots of the moments when I was completely honest with her, when I called her out for her drinking and begged her to get help. But she never got help.
Does anyone want to read a book about something so depressing? I struggle to find the light in her life story. I guess I will have to bring the light from my story to hers. I strain to remember happy memories, and when I do they are often followed by the memory directly before or after, where she would lash out at me for my 'ungrateful' nature and my 'hateful heart.' I hope that those of you who know me will still respect me after what I am about to do to my mother's memory. Let me know if you publish such darkness.
And so I type away, because it is all that I know how to do at the moment and it is free. I want to be free from this story, which is why I have to write it out, as painful as it is. I've reached out to some of my mother's friends, who both had to also cut off contact with my mom because of the vitriolic poison she brought to every occasion, hoping I can find out more about where my mother's mind went and how her drinking affected them. I am hoping to talk to some people that knew me when I was a teen, when things started going really downhill for her and I, to try and jog my teenage memory into remembering the darker parts that I have swept under the rug.
I will likely share more of this process as I move through it, but I am going to save the writing for myself for now, and a good editor if I can find the right person. Is it you? But surely the despair I've felt surrounding my mom the last 20 years will leak out onto the content of this Substack, as it has become my brain-dumping-ground. Please do share if you have memories of my mother, Rosemary South, I have done so much therapy that I feel like I've subdued some of the raw resilience that she instilled in me. This is the story that I inherited, like it or not.