Despite enormous effort and spiritual healing, my life still feels apocalyptic, and I’m considering the possibility that I have lupus.  After the word kept strangely coming to mind while writing, I decided to look it up.  I have a vague memory of someone suggesting I might suffer from it.  The spectrum of physical problems I’ve been dealing with for many years, I learned, is encapsulated by systemic lupus: arthritis or fibromyalgia (either one), extreme fatigue, memory loss and brain fog among other cognitive impairments, kidney problems, anemia, mouth ulcers, pleuritis (inflammation of the lining of the lungs), low white blood cell count, frequent infections and flu-like symptoms, depression, and Raynaud’s (easily frozen fingers and toes).  I don’t have health insurance, so I can’t see a doctor, but I’ve been diagnosed with each criteria individually and hospitalized for many of them, including at least two kidney infections in the past two years, with a frequent recurrence of that same back pain and shivering and overwhelming, nauseating exhaustion.  A trip to the ER last September over what seemed like a bona fide heart attack was diagnosed as severe pleuritis, a pain which sets in hard every two weeks or so.  I used to get such terrible mouth ulcers that some bore through my gums all the way to my bone.  Long before I had children, friends used to describe me as “sickly.”

Forgive me, for I must unburden myself of these things.  This post really serves no other purpose.  Every day, I wonder how much longer I can care for two little boys by myself with not enough money and little social contact, and the idea that my physical problems might be the result of a chronic condition that will never simply get better is casting everything in a different light.  Lupus has no known cause and no cure, and I’m allergic to the primary treatment (nonsteroidal anti-inflammatory medications, i.e., aspirin and Tylenol), and yet I would still be relieved to have a name for what ails me.

At least two nights per week, the pain in my body is akin to early stages of child birth, and I think I will die before morning.  If one of my boys wakes me in the middle of deep sleep, which happens often, it is gut wrenching.  I’m overcome by the urge to throw up, and a wave of burning, hair-raising pain passes over me.  My forgetfulness and brain fog, which led me to receive disability benefits for three years in my early twenties, have become so severe that I’ve stopped socializing almost entirely.  Trivial conversation is painful.  Being unemployed, I rarely encounter anyone other than my children, and my mother is coping with a spectrum of overwhelming social sensitivities that I’ve invariably become mired in, and I cannot cope with it at all.  And so I sink deeper and deeper into exile, now somewhat self-imposed simply to give rest to my mind.

There are the occasional rescuers, and they buy me a few more months.  When my rescuers run out, I fear that my time will.  Maybe they will never run out.  After digging me out of the snow, treating me to an evening of healing in his castle, and buying my boys new boots, I spoke with Jimmie on the phone.  I asked him if he wanted to celebrate Valentine’s Day together, and he rambled on for a long time about how horrible it is to date someone with children, asked why my brother spends so little time with me and my boys, and criticized my ex-husband again for things I do not even want to think about anymore.  Nothing like getting laid to cure a man of a bout of altruism.

I asked him to leave me alone, ending even our friendship, which never could break free of the need for sexual intimacy.  If my life were different, asking a man to get out of my life would be such a negligible task, a part of life, but given my circumstances, it feels like cutting off one of my few lifelines.  If the occasional stay at the Jimmie hotel can be called a lifeline.

I still cope with severe depression, although it is mighty strange to be depressed without the usual emotional suffering.  There is emotional pain, but not suffering.  Difficult to describe.  There is simply the observation, the experience, of being incapable of carrying out tasks, particularly social ones that meet my needs in the area of intimacy.  If it weren’t for writing, I would be entirely cut off.

I continue praying and meditating and reaching out to the divine.  There is a lot of love out there.  And in my heart.  No matter how painful and challenging my life becomes, I feel such sublime gratitude for that love.  Someday, it will come out of me without all of these obstructions.  Until then.