By

Dare

It’s such a cliche.

“Treasure today because tomorrow isn’t guaranteed.”

What a worn-out phrase. Who is living their life for the moment anymore anyway? There are bills to pay, jobs to work, houses to find, and stresses to keep you awake at night worrying about tomorrow.

“Treasure today…” 

What’s so great about today? Nothing is working out the way it should, and hardship is the whole of our existence at the moment. What’s so great about tomorrow? What could possibly be coming that we have to look forward to? How are things going to work out when nothing is going right? But we keep going, keep living, and life goes on.

There are endless tomorrows, it seems, each more stressful than the other. When will life go the way we want it to? When will this “working out” my mother keeps preaching about happen? My parents are moving; we don’t have a home of our own, and there isn’t enough money between us to rub two pennies together. Where are we going to live? How are we going to eat or pay our bills? What are we going to do? Life’s fucked up, full of stress, and it almost seems that trying is pointless because it seems to achieve nothing. We take one step forward only to get knocked back three steps.

Then it hits…

“…. tomorrow isn’t guaranteed.”

*****************************

November 18th, 2024, started like any other day. I woke up, and life was the same as it always was. The man sleeping next to me was snoring like an angry bear holding a microphone. I could feel his snores reverberating through the mattress deep into my chest. The dog was asleep at the foot of the bed with the purpose of getting in the way, it seemed, as I tried to get out of bed. The cat had made herself at home in the gaming chair after having gotten kicked one too many times lying at my feet during the night. Waking up, nothing was out of place. But the lights came on in the bathroom, and everything was just a little off. There was a circular glare over everything, and it irritated my eyes. Maybe it was some leftover sleep that I hadn’t cleared yet. Nothing saline can’t help fix. Except it didn’t.

Then, driving to work that morning was harder than usual. The lights from the oncoming traffic headlights and the street lamps were aggravating with that new circular glare and starbursts. When I got to my classroom and turned on the lights, they were too bright; that circular glare was still ever present, and it all gave me a headache. But everyone’s eyes get tired every once in a while, right?

No big deal.

Then driving got harder because seeing kept getting harder. The damn glare would not go away. That sleep stuck in my eyes was sure persistent. Or did I just need new contacts? Things were starting to get a little fuzzy around the edges. Maybe I should go to the optometrist and get a new prescription.

No big deal.

Then it was the unexplainable tingling. When did my leg fall asleep? Maybe I was lying weird. If I adjust the angle I am lying at, my leg will wake up. When did my hand fall asleep playing this game? Was I leaning against the desk wrong and cutting off the circulation to my hand? Was I holding my controllers weird? Why does brushing against that part of my arm tickle and tingle? I was careful this time not to cut off the circulation to my hands. Why did my fingers still fall asleep? People’s limbs fall asleep all the time, though, right?

No big deal.

When did I stop being able to read? I was just reading yesterday. I love reading! What does this card say? Why is this text all blurry? Am I really getting that old? I didn’t think people started tromboning until their 50s. Why can’t I tell which one of these paint bottles is red? I need the red. There are three bottles here. I know because I stocked this drawer that one of these bottles is pink, one is orange, and one is red, but which one is which? When did I go color blind? I should really get my eyes checked over break. It’s a month away. I’ll be fine until then.

No big deal.

When did I stop being able to type? I have a degree in creative writing and can type 90 words per minute on average. Why am I having such a hard time getting these Individual Education Plan notes written and updating these progress notes? Why am I making so many errors? Why did this note, which should have taken me ten minutes to type at most, take me 30? Maybe it’s the eye issues I am having. A new prescription should be able to help with that.

No big deal.

Why am I getting nauseous and dizzy? Well, I saw the doctor in October when the bloodwork for my liver came back, and she did say this could happen because of the liver damage. Not to mention it is flu season, and all the kids are getting sick. Two of my students got sent home last week for being sick, and I was most definitely exposed. I don’t have a fever, though, so I’m fine.

No big deal.

Only, now I’m really dizzy, and I don’t feel like myself. I am so tired all the time despite taking naps, which I never do. Am I pregnant? No, the test came back negative. Something is wrong. Maybe my liver is acting up. The doctor did say if I felt pain in my side, got nauseous, and started vomiting, I needed to go to the emergency room. I’ll do that. They’ll know what’s wrong with me, and it will be fine, right? Of course, I’m going to joke with the nurse because that’s what I do.

“It feels like I got a tumor in my head.”

“No, you’re too functional for it to be a tumor or something wrong in your brain. It’s just a stomach bug.” Just a stomach virus, the doctor at the Emergency Room says.

No big deal.

When did walking down the stairs get hard? When did I start getting vertigo and motion sickness? Why can’t I tell where the next step is? Have my eyes gotten that bad? I’ve run into this bar in this doorway at school five times today alone. I know the bar is there, obviously, if I’ve run into it five times. I can see it, and yet I still keep running into it hard. It must be the boot I am wearing because my ankle is hurt. It’s throwing my balance off, and I have always been clumsy. And the vertigo is just the liver acting up, like the doctor said it was. I’ll wear the boot as little as possible, and it will all be fine. I’ll pay more attention to where I am going too.

No big deal.

When did I start smacking my hand on the door? When did I stop being able to find the door handle? When did I start knocking things over? How did I manage to knock over that water bottle and get it all over the table? I knew it was there, and I still hit it. What is wrong with me? Something is not right. Well, my vision is messed up. Maybe it’s time I go to the optometrist after all and actually get that new prescription I have been thinking about. It is winter break. There is no better time.

No big deal.

What do you mean, my eyes are fine? What do you mean, my eyes are physically fine? I couldn’t even read the second line on the reading test. I could barely tell you the big single letter was an E. Obviously, there is something wrong with my eyes. How can it be my vision processing? Okay. I’ll make an appointment with my doctor. She got me in quickly. Oh, the heightened liver enzymes can cause this? That doesn’t make sense to me, but you are the doctor. You want to do an MRI just in case, though? That seems fair. The referral went through, and the MRI is three weeks out. I should be fine in the meantime.

No big deal.

But since when did I stop being able to buckle my seat belt? Why do I feel the need to have my arm drawn into my chest all the time now? Why am I feeling so unsteady on my feet? And when did I start having these out-of-body experiences? Well, the doctor says it’s probably the liver, and we are working on that. I have to get my classroom ready for the first week of school after the break and meet with my advisor. Sure, I don’t feel quite right behind the wheel, and seeing isn’t great, but I have to be here. I was able to get rides every other day this week, but no one can take me today. Mom had plans to clean the house with my father, and my boyfriend has to work. I drove the other day just fine. I should be okay today.

No big deal.

What is this feeling of sudden, intense anxiety? I took my anxiety medication this morning. Why do I feel this oncoming wave of doom and dread that is telling me to go home right now? If I stay here much longer staring at this computer screen, I’m going to puke. I don’t think I can get out the door without falling down. Maybe I should call my mom and see if she’ll come get me. She said no. She finally got dad to help her clean the closet and isn’t going to miss that opportunity. She said I made it to school, I can make it home. I can try.

No big deal.

Why is my arm shaking uncontrollably? Why won’t it stop? I need to pull over. Why don’t I feel like I am in my body anymore? I need to call my mother. They have to come get me now. There is no way I am making it home safely. They are on their way. Oh, the tremor in my arm finally stopped. Just kidding, it’s back and stronger. I should go to the emergency room. My father says they probably won’t do anything for me aside from giving me medication. This happens to my mother all the time, and she is fine. But this has never happened to me before. I need to go. Something isn’t right. But I won’t panic. It’s probably just a fluke.

No big deal.

They want to do an MRI. That makes sense. This is a neurological symptom, and obviously, they want to rule out potential stroke or other brain issues. I have an MRI scheduled for next week, but this one couldn’t hurt. Surely it is going to come back clean, and they will move on to the next step in the process of elimination they are using to figure out what is wrong with me. Now they are moving me to a private room. That’s weird, but no cause to worry. They just don’t want people in the hallway. It looks bad, like my dad said.

No big deal.

Except then the doctor comes to talk to me, and I can see it in her eyes and hear it in her voice as she states that she is going to go through the paper, and she doesn’t want me to be scared of the big words. What do you mean by two abnormalities? Masses? Neurology? Medical transfer to a bigger hospital?

But it was no big deal!

Several MRI’s, several doctors, several vials of blood, one spinal tap, two EEG’s and a full week and some days later doctors still don’t know what’s wrong with me*. One thing they all agree on, though, is that it’s a big deal. And suddenly tomorrow is less sure, stresses about a house and finances seem smaller, and I want to live like I’ve never wanted to live before.

What a cliche that dumb phrase, but what a message, and what profound truth it holds.

“Treasure today because tomorrow is not guaranteed.”

*********************************************************

*I have answers now. It turns out that I have Balo’s Concentric Sclerosis with Tumefactive Demyelination. It is a very rare and aggressive form of Multiple Sclerosis. From the day of my first symptoms to my hospitalization on January 3, 2025, was a month and 2 weeks. In that time frame, a large part of my brain took damage in the left parietal cortex and the left frontal lobe, causing visual neuropathy (the vision loss and color blindness I experienced) as well as compromising my motor functions. I experienced right-sided weakness, tremors, now called functional movement disorder or non-epileptic psuedo-seizures depending on which doctor I talk to, as well as speech delays, cognitive deficits, spatial awareness deficits, and memory issues. For a time, I was using a walker to get around and had to go to intensive physical therapy, occupational therapy, and speech therapy. Even to this day, I struggle on occasion with speech, memory, and motor function, both fine and gross. Symptoms get worse when I am under stress or try to go back to work.

According to my doctors, until about a decade ago, my diagnosis would have been a death sentence. Today, there is hope. I will never get back the part of my brain I lost, and there is a chance, however slim, that I will have a relapse and lose more function if my immune system decides to attack my brain again. But I refuse to live in fear. My life is going to be fulfilling. The hardship I experience is going to mean something.

For anyone else with a story similar to mine knows that there is hope. You have a future. You can continue to live your life. It will be different from what it was before, but it doesn’t mean it’s over.

It’s a big deal, but you can overcome it.

-Dare