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Just to Be Alive

Updated: Jun 8, 2021

| This is the 575th story of Our Life Logs® |

I was born in 1983, in a small Croatian city down the coast of the Adriatic Sea. It was the middle of summer, and from what my mom always said, it was raining the morning I was born. It was like the skies knew the walking-talking trouble was about to be born. And boy, oh boy, were they right.

As a baby, I would cry all day long, and sleep through the whole night. I’m so sure that it was fun to be my mother (wink). The problem was that ever since I was born, I had health issues. Unfortunately, no one knew what the problem was exactly. My mother would breastfeed me, but I wouldn’t keep her milk in my body. So, I cried because I was hungry and was hungry because I cried. You could say that I am lucky to be alive. My whole childhood was spent going to many different doctors who tried and tried to figure out what was wrong with me.

I’m the little one on the left, holding the cat.

Fast forward to 1995. I went to a doctor's appointment because I had constant headaches. First, I thought it was due to the fact I was 11 years old, with crazy hormones and a brand new period to boot. I went to the doctor in my city who then sent me to a nearby city. As I sat on the exam table, the doctors took my mother aside and explained to her that I had a brain tumor and that they were so sorry, but I didn’t have much time left. At the time, I had no idea why my mother cried the whole car ride home. My family spared me that information, as I was quite sensitive and took everything to heart. Instead, they told me I needed to go to the hospital to check on my headaches, for which I thought nothing about.

In a few weeks’ time, my mother had made peace with the news. Her sickly little girl with big eyes and long lashes was going to die. But my late father, stubborn as he was, never gave up. He took me to a doctor in the capital city and took me to a fancy hospital, where my family would visit daily.

The first day I came to the hospital I was very shy, but soon, I opened up and made friends with a girl who was my roommate and with some guys my age who were staying two rooms down the hall. We were little bandits for sure. We kept on running away from the hospital to go and take walks, buy a lot of candy (even though it was banned), and played cards late into the night.

After about a week of tests and exams, the doctors ruled that I was okay. I was a swimmer at the time and the doctor concluded it might be the reason behind my migraines. My mother sang praises and my father was relieved. I, however, was having a lot of fun and they barely convinced me to leave.

Life went on as it usually does--at least until 2015. I was working at the office at that time and had a very hard time focusing. I was tired the whole time, my boss was controlling, I had trouble sleeping, and I was suffering from insomnia, but I didn't pay much attention to it. It was my first official job and I thought all those things are part of being employed. I thought to myself, I am just spoiled, bratty, and I should take a look at my coworkers who work harder than me and still function normally. I pushed my so-called “laziness” to the back burner.

One Monday morning, I remember like it was yesterday, everything looked normal. Work, tasks…until…my arms stopped working. I tried my best to lift my arms on the keyboard and type the words I needed for that day, but my body failed to listen. I was in utter shock. Panic. This never ever had happened to me before so, I didn’t know what to do! A wave of exhaustion hit and I was too tired to even care to get my arms to behave. I tried to cry out to another person in the office, but all I could produce was a slurred jumble of nonsense. A sinking feeling took hold of me; my life would never be the same again.

My boss noticed my trouble and she sent me to the emergency room. I spent five days at the ER, and they told me I was dehydrated and probably just exhausted and they gave me an IV of some sort. I’d been to a hospital with a seemingly life-threatening illness before and had come out Scott-free, so I took the diagnosis in stride and got back to work after I felt better. No more worries, right?

The only issue was, it happened again and again and again. It was clear something was seriously wrong with me and I had to find out what. I was not going to be the sick little girl with no real diagnosis for the rest of my life.

So, I quit my job and took some time to recover so I could start taking care of my health before anything else. I was in my early 30s and still way too young for those kinds of things to happen to me. If I don't have health, it is all pointless. Still, I faced so many months of isolation, depression, and confusion…

I went to doctor’s appointments left and right (it was like being a kid again!), but this time, not everyone took me seriously. I went to my general practice doctor who told me that I was still young, there were people in worse conditions, and that I was just tired. I insisted on a brain scan. She insisted it was too dangerous. Finally, I packed up my dignity and my concern and took it elsewhere.

I went to a specialist for internal medicine and she sent me to do some tests. I was healthy. Nothing wrong with me according to the test results. Yada, yada, yada. Doctors even described it as stress and gave Xanax (I didn’t take it). I am not a medical professional (nor should I be), but my gut told me that something was wrong and I needed a brain scan.

After a year and a half, in 2016, I went to another checkup when my doctor noticed I was pale, I had a fever and I was out of energy. Yes, yes, yes—that is what I had been saying. But this time, she—urgently—sent me to another city and I stayed there for five days.

This new hospital had amazing doctors who paid attention to my health, and it was the first time they mentioned the term “multiple sclerosis.” Needless to say, I didn't even know what that was. They didn’t push the diagnosis, and I didn’t know to pursue it.

When I came back from the new hospital, my doctor was concerned. For the first time, she sent me to do a brain scan in a private clinic. I went to a neurologist for the first time in January of 2017, and he saw my results.

“Multiple sclerosis,” he said. Then, explained it to me. “MS is an autoimmune disease that attacks the central nervous system and, as a result, can cause temporary or permanent disability.” He told me it was an illness with 1000 faces and no one knows what will happen, nor can it be predicted.

“Is this a joke?”

In that moment, I literally felt as Ashton Kucher would jump out of the closet and tell me I am being “Punk’d.” Even as the walls came closing in on me, Ashton was nowhere to be seen.

I was, of course, lost and in shock. Will I relapse? Will I need a wheelchair? What if I’m in the wheelchair and I fall? Will I lose my sight? Feeling in my hands? While I was stunned in silence and in utter confusion, I am forever grateful to that doctor and to have a name to call my illness.

I had my first relapse three weeks after the diagnosis. When I was rushed to a hospital my Vitamin D levels were very low and my blood pressure was even lower. I spend the next six days on steroids. It was an experience I never want to have again.

In my country, you need two relapses within a year to be eligible for therapy. Many people suffer because of this nonsense, but those are the rules. I, however, was lucky, I had an amazing doctor who told me about a capital-based doctor who was doing trials and gave me his contact. I went to the capital to meet that doctor. He did a checkup and accepted me for a clinical trial.

• • •

After a few months on a new medication, I was finally able to sleep the whole night long and my Vitamin D levels improved. I started to go to hospital visits once every two weeks for the next six months, after which I started, and still go, checkups and injections that happen once every three months.

When I was at the hospital, none of my “real” friends even asked how I was. Even my so-called “best friend” simply sent me a text that asked me to let her know when I got out of the hospital so we could have a cup of coffee. What would I do with coffee?! What I needed was friendship. A shoulder to soak my salty tears into and a soft voice to tell me to persevere. My “real” friends did not do what I needed most. But a guy, whom I had just met a few weeks prior, took time off work just to spend days with me. He became the friend that helped me make it through.

And where am I now? I do the work I love, I write, create, I laugh more, and I eat too much chocolate (if you ask me 😊). After I received my diagnosis I started to take more care of myself, my inner peace, and my wellbeing. I go outside and enjoy the sun (taking long walks) because I never know when the day will come when I am no longer able to move my legs on my own. I learned how to enjoy small things in life and not to stress if I don't have to. Just to be alive is enough to give me happiness beyond measure. I hope you can feel the same.

Lilith, 2021.

This is the story of Lilith Ash

Lilith grew up going to one doctor’s visit after another. It wasn’t until years later that she would live through a parallel experience, but this time, in her 30s. Years of going to and from a hospital landed her a diagnosis: Multiple Sclerosis. This diagnosis put life into perspective and sent Lilith on a journey to do what she most loves: writing.

Lilith is a Leo (if that tells you anything!) and a super creative nerd who eats too much chocolate and enjoys books, yoga, and writing. She now takes time for her health and her mental wellbeing because, as she says, “If you can’t love yourself, how the hell are you going to love someone else?”

This story first touched our hearts on March 4, 2021.

Writer: Lilith Ash | Editor: Kristen Petronio; Colleen Walker

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