I am in a holding pattern. A little less than a month out from Mayo Clinic, and not too far from the hell that has been the last twenty days.
First, a little anecdote. Twenty days ago there was a shift in my stability. I recalled the incidents that occurred on Halloween in my last blog post. Five convulsion episodes struck me out of nowhere, shutting down my rare night of plans before dark. These were different than the routine mystery convulsions I had been having. Their frequency and refusal to subside after large doses of medication was alarming. I was hoping it was just a freak incident, but the following twenty days proved otherwise.
The days that followed were filled with intense migraines, severe brain fog, inability to focus or read, and lots and lots and lots of convulsions. I went from having around four episodes a week to four a day. This abrupt change in pace called for appointment overload time. Once again, I found myself preparing to accept the worst given we were considering some pretty big and scary things. Another EEG, lumbar puncture, MRI, and a few blood tests later, no answers to be found, except for my abnormal EEG. After a thorough look from my neurologists and five collaborating epileptologists, I had a diagnosis of a rare seizure disorder with dystonia. Answers, finally. I was elated and hopeful that my new medications (levodopa and an anti seizure med) would improve some of my symptoms.
Fast forward a few days later. I puked 64 ounces on the side of a freeway somewhere in Rancho Bernardo on my way home from a misscheduled MRI. I couldn’t stop throwing up for days, and my “seizures” had only gotten worse. Long story short, I don’t have epilepsy and I was pulled off all of my medications. Another misdiagnosis spun me into frustration. Severe withdrawal followed as I spent the next week too sick to stand up and experiencing some of the worst psychiatric side effects I have thus far. Panic attacks, self doubt, depression, insecurity, helplessness, guilt, all of the feelings I thought I overcame showed up knocking at my mind’s door. The withdrawal from these medications opened a floodgate for me to feel and embody all the things I am not.
About a week past the thick of this pain, the dust has settled, but my mind doesn’t quite feel the same. I’ve been pushed into a place of stagnation and my creativity has been greatly suppressed. I have been trying to fight back in frustration, and I keep failing. I just feel a bit numb and uninspired. I feel I have nothing to say because I have too much to say and I am too tired to say it. My thoughts are jumbled. I’ve been wrestling with self doubt. Questioning why I am even doing this? Questioning if I am letting illness define me by being so public about it? Questioning if I am just writing about the same thing over and over again? It’s hard to discern what thoughts are valid and which aren’t. It’s hard to discern how much of this is lingering effects of my medication. It’s hard to make it through a day without having a break down.
I had plans Saturday that I had been looking forward to all week, and when I woke up Saturday morning I knew my body was not on the same page. It was pleading for me to rest. I was so disappointed, and I felt so guilty for bailing even though I knew my friends understood. I felt guilty for feeling guilty. I felt guilty for feeling disappointed. I felt disappointed for feeling disappointed. I haven’t been giving myself enough grace.
Stagnation is a part of life, but I forget that it is especially a part of chronic illness. I have been trying to formulate the point I want to make about stagnation, and I guess I just want to be honest and admit that I am struggling and that is okay. Maintaining patience within stagnation is hard, and I am not doing a very good job of it right now. That is okay. I don’t have to do a good job all of the time. Fighting boredom gets boring.
I have been craving to move my body lately. Art and writing can only get you so far. I have been having dreams about surfing, being in a yoga class, hiking. I take this as my body telling me I need to fight this slump through movement. I obviously can’t go surf, go to a yoga class, or hike some crazy hike, but for the next few weeks I am going to make an extra effort to be consistent with movement. A walk on the beach, a quick swim, some stretching, running errands, these little things make a huge difference in stabilizing my moods and physical symptoms. When these dark and oppressing feelings occur, I can’t sit idly by and let them consume me, and I vow to not let this slump get the best of me. By telling you all this, I am holding myself accountable.
If you ever find yourself feeling helpless in a place of stagnation, change something. Try something new. Even if it’s small. Break out of your normal food routine. Watch a new TV show. Read a book. Do art. Move. Stagnation is inevitable, but it serves as an opportunity to find newness or gratitude somewhere we aren’t usually looking.