An Experience Worth Remembering

Calm. Collected. Out of control. These were the feelings that he had when he opened the jar of peanut butter and scraped out the sides. It was always done in a peculiar way based on a comic that he had read some time ago: scoop out one half, then dig out the underside of the remaining half and leave the very top of the peanut butter intact until the last possible moment. “If you can control the peanut butter, you can control your life”, he muttered.

The peanut butters’ half-top remained intact. It was the only thing that seemed to be going right in his life. He could certainly sit down and spread peanut butter on toast, then grab the honey bear and swish a light drizzle over the whole slice. He could sit down at a table and bite into the delicious blend of warm toast and butter, with just the right amount of crunch, and eat it slowly until nothing was left. To him, it was all that he could do at the time.

Crumbs of toast and drips of not-so-solid peanut butter fell into his curly beard as he ate breakfast. Even when he was younger, bits of food would attach themselves to his face. It was better that they get caught in his beard than to end up on his clothes, the floor, or somewhere else more embarrassing. It was so much easier to just get up and wash his face off than to check everywhere that food could have gotten.

The beard also provided a convenient excuse: he couldn’t feel his beard, so there was no way he could have known anything was on it. No one knew that the same applied to the right side of his face at times. He was clumsy at times, and often unsure of himself, but the reason was the same. He just couldn’t tell.

It wasn’t always this way. It seemed to happen at random, for no apparent reason. Some days things would be fine; he would be able to do absolutely anything he wanted, and took advantage of that fact every chance he got. Other days he would describe them as “a little off”, or maybe “a bad day”. The worst days he would describe it as “fuzzy” or “torture”. Perhaps even “debilitating”. Even on a good day, those memories haunted him.

He had worked so hard to get to this point. Right now, everything seemed like it would be okay. Everything had a purpose and a place, and he had full control over what could happen. He was so sure that today would be a day worth living and that he could make the most of it. And yet…

Deep down, he knew that wouldn’t last. Today wasn’t really different from yesterday, was it?

One little mistake wasn’t enough to cause problems by itself. No one single thing was ever the problem. All of the problems he ever had went back to a general discomfort with life, and with existing. That discomfort would start out small at first. A bit of numbness here, something that seemed a little too loud there, food smelling delicious and also feeling out of place after it was settled into his stomach. The general feeling of discomfort that he had when dealing with anything of import was fleeting, all consuming, and unexplainable.

Eventually, the discomfort would come to a head. The tingling that had been going down his right arm would start feeling more real than anything that touched it. Sounds would pound inside his head, growing louder and louder with each passing minute. Pain would fill up the entirety of his world, and anything that he had eaten would decide that the stomach is a very fine catapult indeed.

There’s a term commonly used to describe this sensation: migraine headache. He understood very well what that meant. Something that he had been doing, neglecting, or consuming was causing his body issues. Sometimes he was able to fix the problem by immediately launching into self-care mode. ‘Eat a banana and a grapefruit, drink plenty of water, take a shower, cower in a dark room until it stops’.

Sometimes he could simply ignore it and correct the problem after the fact; with hundreds of migraines under his belt, he could recognize the symptoms and make corrections immediately. Sometimes, however, he could not. The entire idea was both familiar and perplexing. The symptoms seemed to change each day, or with each different thing that he did. Sometimes making a change had an effect, and sometimes it did not.

The worst migraines would take him to a doctor. Sometimes this was clear: he was obviously having an issue that medication could fix, and try to take better care of himself in the future. Sometimes this was not clear, and he would either leave after having medication feeling slightly better, or was sent off to an emergency room. Doctors rarely took the time to actually understand his problems and even the ones who knew better didn’t seem to have any answers.

Nothing really made sense at the time. Time itself seemed to be lost. He has clear memories of what had happened, but not when. Sometimes he didn’t know why. He was getting desperate; his entire body seemed to be failing him in mysterious ways that were unexplained and any time he told someone it was dismissed as anxiety, a consequence of his living situation, or just odd. Each time he heard that the anxiety would grow. Something was wrong, everything was wrong, and nothing could be done about it.

The last time he was in the emergency room seemed like eons ago. In fact, it was only a few days prior. He had treatment the previous day, and the treatment was somewhat effective. The migraine had stopped; the only remaining symptoms were something else, he was sure. Not having the ability to feel pain in your entire right side was certainly something else. Not being able to pick up his foot off the floor was certainly something else… or was it?

He had endured a doctor who was angry that he was constantly using medical services. The anger seemed placed in the right spot, but it was far too forceful and accusatory. Panicking wasn’t what he was doing; he was too tired for that. He was simply trying to stay alive in a situation where the cold was going to leave half his body paralyzed for long enough that he would die from hypothermia.

Standard procedure for paralysis on one side of the body by EMTs was to rule out a stroke. Through all of the frustration and anxiety broiling around inside his head, he made a special note of this. This wasn’t the first time this had happened, and the last time had no conclusive answers. This type of paralysis had been happening more and more often lately. It was a consequence of a migraine, some part of his brain degenerating from having too many, or perhaps just one that lasted three long months.

When he arrived in the hospital he was checked in. This wasn’t the first time he had been here recently; far from it. This time he listened to the EMT describe his situation as ‘very anxious, but not in a dangerous way’ and ‘frustrated’. His blood pressure was dangerously high, and was monitored closely going forward.

After what seemed like a short wait, he was moved in a wheel chair to another room. The doctor was friendly, and he described having a migraine 4 of the 5 previous days and had been treated yesterday. He was sure that he didn’t have a migraine. The doctor scheduled an MRI to rule out any other problems, like a stroke. He was wheeled off to wait again.

This wait felt longer. No… it was actually shorter, but there was a TV in the room that he could focus on. Commercials marked the passage of time. Rest was all that he could do, despite the growing worry that something was seriously wrong with him. The anxiety was gone now; he either had some kind of problem with his brain, or didn’t. It was completely out of his hands now.

A short wheel holding a bag full of fluids later and he ended up in the MRI room. He wasn’t wearing a gown due to the extra precautions of dual-layered pants that he was normally wearing. None of his under clothes had any metal to potentially pull him into a magnet that could rip apart his spine from the inside out. The nurse had a very nice pair of headphones that could play music. Today’s specialty was Jazz.

The total scan time for the MRI was 10 minutes. While he was inside the machine, loud thumping and screeching echoed all around him. Another familiar sensation washed over him: sleep. This was the sleep of over-stimulation, of pain and nausea and sound being so much that his body would shut down. Paradoxically, this was also the sleep of alertness. He couldn’t move and couldn’t blink. He could think and hear, and he thought it was so nice to not feel anything today.

10 minutes of alert-sleep inside the machine turned into 15 minutes of sleep, and then a short trip to a waiting room, and then well over an hour of sleep after that. He was roused at some point and sent to a doctor, where he was told that nothing looked wrong in his brain. No stroke, no aneurysm, nothing else. He just had a migraine.

That made no sense. He was treated for a migraine; how could he still have one? The medicine worked! Nothing was loud or painful or nauseating or anything else that he had known of. Migraines don’t cause paralysis, they cause all kinds of increased and discomforting sensory situations. How many times had he had lower than normal sensation and not even noticed? How much of a lie had he been living?

The entire day was gone. It was well into the dark part of the night. Too far away from his normal sleeping location, he simply called a taxi, rented a hotel, and went to sleep. He slept for what felt like two days, alternating between sleep, weakness, hip twitching, and relative normal. His foot still dragged on the floor until the third day, and by then he had figured out everything. He couldn’t do much other than think, after all.

Multiple simultaneous migraines. Migraines that cause paralysis. Migraines that only happen in your abdomen. Migraines caused by over-stimulation from foods, like glutamate. Migraines that have no pain at all. Migraines that mimic a stroke. Migraines that aren’t diagnosed properly. Doctors having too little time to actually recognize any of this.

These… were answers that he didn’t have before. These could make a difference. He could maybe build himself a reliable restriction on what he could and couldn’t do. It would take time to recognize the pattern in all of this, and that infernal alert-sleep could complicate things so completely that he acted like someone else.

Today was different. For the first time in his entire lifetime, he had answers. Answers to questions that he had been asking his entire life. Answers to why he was always anxious, and why his problems seemed to be present forever. The feeling of not having any control over his life was a familiar one, but it was hollow and empty.

I took a sip of my coffee and sat down to write. I had no idea what I was actually going to start with, but sitting there feeling sorry for myself and doing absolutely nothing with my time was not going to get anywhere. Today, I am here. Yesterday’s me can be someone else.