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All posts for the month January, 2020

In 2019 I found out what’s been wrong with me for 13 years. The Mystery Illness, the thing I knew was there but couldn’t prove or name.

At some point, quite possibly when my son was born, I aquired a tear in my spinal dura. It leaked for so long that it became fused with a spinal vein. For years and years, I was dumping spinal fluid into that vein, keeping my brain and nervous system in a constant state of starvation.

My thoughts & feelings toward the medical community will be a whole other series of posts, something to explore if and when I am finally on the other side of this illness. Unfortunately, receiving a diagnosis was only one part of the journey. Right now, I am still fighting to FIX it. I have had multiple procedures including two surgeries–one in North Carolina and one in Los Angeles. Despite this, my most recent imaging shows that I am in fact STILL LEAKING. Most likely because (although I have not officially got the say-so from the medical community, I am de facto quite sure) I have a very fragile spinal dura, on account of my polycystic kidney disease, which–I have since learned–is a disease of the connective tissue.

My last surgery restored much of the energy and functionality that i’ve lost over the last year and a half (I no longer have to walk with a cane, amd I can drive, read, type, and carry on a conversation), However, I’m still in extreme amounts of pain. It appears I may also have a degenerative spine condition.

I am in the process of filing for disability. I do not run workshops or get out to literary events in my local community. My online magazine is on hiatus, and i haven’t written creatively in months. I am perpetually in a state of waiting for results of a test or for someone to get back to me for something. This week, the wait is for a new MRI of my spine so that the surgeon in Califoria and his team can determine if one of my previously existing leaks (yes, actually there were two) appears to be active. There’s a lot riding on Yes or No. Or maybe not. IDK. We have to take these things one day at a time.

In the interim, I am doing my best to build up my strength and to process my grief. In the midst of what I can only describe as a major body / medical trauma, I lost my Mom–and I lost her in a way that fucking ripped my guts out. I was absolutely shredded. And then, after several months of poor recovery and trying to relearn my relationship with my father, who is suffering his own body horror and grief, I found out we’re about to lose my one surviving brother.

Although we had been estranged for many years before Mom’s death, my brother is one of the most precious people on this earth to me. I was closer to him than I ever was with Shawn, and as much as I hate things he has done and who he can be, I can’t bear the thought of him going… and the fact that my nuclear family now consists of two in the Summerlands and one (if not two) with one foot out the door. Assuming I survive my own illness, it realistically won’t be long before I’m the only one left. And I’m not fucking ready for that.

Needless to say, I’m a tempest of grief in the teapot of my own little world. And I’m so very tired, and even still dancing every day with unceasing physical pain. I’m very much afraid the latest reprieve from my worser symptoms is only temporary–I felt close to death myself this time last year. I can’t bear the thought of going back there. I’m too in love with life, and too full of ambition and ideas. I have too damn much to do.

The one thing that is keeping the balance for me is this mantra:

My grandmother (who also passed away 13 months ago) is my spirit animal. My little Polish totem. I think of her all the time, and how she kept herself busy and healthy (relatively) until she was 97 years old. She was a force of nature, a spitfire who saw what needed to be done and did it. I have my sights set on emulating her; I want to wring the very last bit out of this life that I was given, no matter how sad or tragic pieces of it may be. I want to live to be an old woman who has made a difference. I want to leave this world, and my family, better than I found it.

Likewise, I’m trying to be as strong as I have always seen my brother to be: a warrior. In his case, it’s always been him against the world–that’s the tragic thing about his story. As for me, I just want to overcome the slings and arrows so that I can do good, fight the good fight. For everyone. That’s always been what I come back to, this feeling of hope and righteousness. In either case, you have to be fierce to win.

As for Mom–I’m only just lately realizing what I inherited from her, really. The dramatic part of me, the witchiness, the love of being the center of attention. The lust and passion. That’s all her. All things I feel robbed of right now, like I was robbed of her. That, too, is a whole other chapter.

But that’s it. Where I am right now, as we cross into a new decade. Hoping for better changes this time around.