The "New Normal"

I think everyone can relate to hearing the phrase “the new normal” far too many times since the pandemic started. I’m no exception to that – my mom and I joke about the phrase and how we wish people would stop using it. With all of that being said, the past six months have been a hurricane of adjusting to “new normal” and mourning loses of a life I don't get anymore. Since January, I got my first real career job, the sorority I put my college life into dissolved, the pandemic and subsequent quarantine hit, my college graduation was canceled and then made online, my fancy and elaborate plan to propose to my partner got canceled, and I got diagnosed with epilepsy.

I’m not here to say “why me” or to make anyone feel bad for being stubborn about the one or two new normal they may be dealing with. On their own, each one of these changes is fairly monumental and require processing and acceptance. Most people have a feeling of struggling to adjust post-graduation to a new life with a job or the search. Seeing something one put years of their life into die would be hard for anyone. Quarantine has been hard on everyone, taking an emotional and physical toll. And getting diagnosed with a chronic illness is never an easy process. What I am saying is that I am struggling to manage the bombard of “new normal” and find something that is either within my control or not something new.

The other part of this that it is harder to process and accept hard truths and “new normal” when my brain physically cannot process anything further, because doing so causes it to fire off the wrong neurons and shut me down for hours at a time. I haven’t been able to process this chronic illness because to do so puts so much stress on me that my brain seizes under the pressure, or tires out before I can get anywhere leaving me with extreme fatigue for days.

Epilepsy

I got diagnosed with epilepsy in May, after suddenly having migraines for the first time. I had a migraine that suddenly turned into a panic attack and then an inability to form words and an incredible fuzzy feeling like I was living in a cloud. My fiancé took me to the emergency room and even though I was struggling to communicate or talk they would not let any guests in due to the pandemic. I had never been to an ER or hospital for myself before and the fear made the speech worse. They tested me for stroke first. They showed me pictures and asked me to describe them. I couldn't say “precarious”. I had an IV shoved too far up my arm and I couldn't use the arm for the rest of the day, but I thought that was normal, so I didn't say anything. They did a chest X-ray and a CT scan. I threw up after the contrast fluid went in my body and started feeling better and talking came more easily. They kept me overnight and did an MRI and a psych evaluation. When everything came back negative in a last-ditch effort, they ordered an EEG. At this point I just wanted an answer. I wanted to know why the scariest moment in my life happened and what we could do about it.

The EEG was a short, 20 minutes of hell with strobe lights that give me panic attacks and hyperventilating that also gives me panic. It was the only thing that came out abnormal. I had a seizure in my left temporal lobe, and it wasn't my first – in fact, I had probably had one during every migraine earlier that week. They quickly put me on medication (Keppra) with horrible side effects. I had to not only grapple with another major life change, but I was dizzy 24/7, my body felt like it was made of lead, and I was still having seizures because I thought I could go back to working like nothing had changed.

My boss convinced me to take two weeks off, during which time my fiancé and I moved due to a termite infestation in our apartment. I had my first neurology appointment where I got put on different medication and told to track my seizures as well as any headaches I got. I started tracking everything and trying to occupy time with other things. I came back to work slowly, and things seemed to be hard but going fairly well.

Then, the day after my birthday I had what’s called a seizure cluster. I had three seizures in less than 12 hours. My fiance convinced me to call my neurologist, who was shocked when I said this was not my first seizure since we last spoke – I had roughly one seizure a week since mid-May. Apparently, I was supposed to be telling her after every seizure I have, not just tracking them. I felt like I had totally failed. I had assumed I was going to be miserable until the next appointment. I thought I would have seizures until the medication started getting into my blood enough to work. I knew the goal was to be free of seizures, but I assumed that goal would take years to achieve.

Apparently, 70% of people respond well to their first anti-epileptic drug. Others either have a type of drug-resistant epilepsy and are forced to find other treatment options, or have to try to or three different medications that can control seizures.

Seizures for me feel like everything around me goes out of focus. Nothing is clear and there’s a fuzziness. It feels like trying to find a radio channel and only getting static because the channels are out of range. I speak and act like I’m drunk - I slur and lose coordination, frequently tripping or swaying back and forth. The entire feeling lasts roughly 30 minutes.

Processing

I am the kind of person who doesn’t get things done unless I push myself to do them. I push myself in work, exercise, in my sorority presidency, and every accomplishment I’m proud of. I purposefully chose a job that would require me to push myself in order to succeed. I’ve learned how to work with mental health issues and cope through them. I’ve never had a physical chronic illness. I’m learning in real time that pushing myself to get work done does not mean I feel tired and accomplished; it means I have a seizure that stops me from getting anything done at all. 

There are two options; work and rest in intervals, or work for too long and have a side effect or full on seizure and be out for entire days on end. The problem is the intervals I need are not consistent, so I never know when I’ve pushed myself too hard until I’m laying on the floor in such extreme exhaustion that I can’t sit up anymore.

This has been my life for two months now, and I have only just been able to slightly realize that this is potentially my life from now on. There is no security - at any moment I could have a seizure, even if I do everything right. It took me two months to really come to terms with the fact that I now have a chronic illness. I feel inadequate because I keep comparing my current self to my past self and feeling so frustrated that I can’t do things I could before. I feel frustrated that so much of my autonomy is gone and I’ve lost control of so much.

I also do want to point out that wonderful things have happened during this time as well. My partner proposed, I got two backyard graduations and finished school, my job is amazing, I started on the Board of Trustees for the Jewish Federation of Cincinnati, I started doing some research with my fiance into ancestry and learned a ton about my family, my friends and family are incredible and support me through everything, I’m in a beautiful new apartment, the supreme court ruled to protect lgbtq people from workplace discrimination, and I’m starting a garden. All of that is true. It’s also true that I am far too tired to fully enjoy any of those things the way I normally would.

It’s incredible to be alive. I’m grateful I got a diagnosis. I’m grateful for treatment and people around me who care about my wellbeing and chronic illness groups that help me realize I’m not alone. I’ve learned that I need to figure out how to balance not letting chronic illness rule my life and taking care of myself. I’ve learned that I am a do-er and that to feel useful I have to be doing things. I’ve accomplished getting through the past two months in one piece. I’ve accomplished taking time off and coming back to work. I’ve accomplished getting work done at my own pace and reaching out for help. 

I don’t know what the future holds, and I’m terrified of that. I have so little control that I am fighting to find anything that I can consciously be in control of. I have so little security I’m finding the smallest things that cannot change and creating them. I have no idea how to live this life and it’s one of the scariest changes to ever come into my life. 

It’s an insane and difficult task, but learning to cope with my “new normal” is what’s required of me right now, so that’s what I’m pushing myself to do.