“I was a sophomore in college, in a bubble of musical theater and nothing else. I had my dreams mapped out and realistic goals set in mind. I was climbing to the peak of my college career. That is, until it came crashing down around me.
It was a completely ordinary Wednesday. I can’t even remember the classes I went to that day but I’ll never forget how I felt. I seemed hungover. I know what everyone is thinking, typical college student getting drunk on a Tuesday night and showing up to class with a nasty hangover. Except this wasn’t the case.
I’d been in rehearsal all night long and promptly went home afterwards to finish up some work and get some sleep. Plus, I was never one to drink on a ‘school night’ because deep down I’m still a goody-two-shoes. But here I was, gnarly headache, slightly nauseous, blinded by any sort of light, and completely put off by the slightest noise. I chalked it up to the onset of some freak flu. That night though, everything began to take a turn. I was, yet again, in a rehearsal for a show opening in the next few weeks. We were dancing; I love dancing, but not that night.
We were going at it for maybe 30 minutes before I felt dizzy. I felt that lightheadedness you get when you get up too quickly. ‘Maddi, take a break, you’re looking a little peaked.’ I remember sitting down, and that’s all. I don’t remember the rest of the night, or the rest of the week.
This next part comes from flashes of memories relayed to me by friends and doctors. Apparently I was not able to continue on with rehearsal so they sent me home but one of the assistant stage managers had the common sense not to let me go alone. She started calling my friends. When they arrived, they found me in full panic mode, completely delusional, not understanding anything that was going on, and apparently just begging, ‘Please don’t take me to the doctor, please, I’m fine, I don’t want to go!’ They tried to get me to their car, but considering I couldn’t walk straight and I couldn’t stop shivering, they brought me into a stairwell in another building. That’s when the seizures started (or what we all thought were seizures). An ambulance was called and I was on the way to the hospital.
Imagine being in the hospital with a nurse asking for your name and you can’t remember for the life of you what it is. ‘Just tell me your name, just your name, YOUR NAME!’ She’s getting frustrated and all you can do is cry because that’s the only thing you remember how to do. That was me. Thousands of miles away from home and completely lost in my own mind.
When the drug tests came back negative they had no theories left, so I was sent home alone in an Uber. In the middle of the night, in a snowstorm. It’s almost comical when I think about it now. Even the most dramatic of screenwriters would call that hokey. But either way, when I arrived home it became worse. The next week was just me in bed in my dark room. There was an overwhelming feeling in every class and I would just shut down. I thought I was a relatively smart person. I thought I was the girl who could go forever. I was the quick-witted snappy friend who always had a joke. Now I was the girl in the back of the classroom, crying because I didn’t know how to be a person anymore. I was losing my ability to speak, see, and even think.
A teacher noticed the shift and insisted I see a neurologist in the area. When I finally did see one I refused to be hospitalized. But after she examined me, she insisted. I was admitted into a new hospital and the tests commenced. Blood, MRI, EEG, Urinalysis. You name it, I probably did it. Yet the further we tested, the further we were from answers.
I had a doctor come in and tell me, ‘Have you ever thought of the possibility it might all be in your head? I can recommend a psychiatrist to assist you.’ And you know what, she was right; it IS all in my head, literally – because after the two final tests, a spinal tap and an optic nerve evaluation, they found the problem. Pseudotumor Cerebri (or Idiopathic Intracranial Hypertension). A build up of spinal fluid in the brain. Rare. Chronic. Confusing. It sprung me into a whole new life. I tried medication, new doctors, any sort of specialist, anything to bring me back to a sliver of the person I was before.
As for my family, it was very difficult for them when I was going through the roughest parts in the hospital. I’m from Nevada and went to school in New Jersey, so my parents and other family members were across the country. They felt helpless until my mom was finally able to fly out. My dad was left at home worried and wondering. Once I was back for summer break, they had to deal with a new me. I was different and it was as if my entire personality shifted because I wasn’t reacting well to the medication and stress of the illness. They felt like they were walking on eggshells around me and we couldn’t hold conversations anymore. However, they never gave up on me. My parents searched for doctors and answers until my dad finally found the physical therapist that I use to this day.
My friends also got the brunt of that bitterness from me and some of them couldn’t take the personality change. I started isolating myself and people gladly let it happen because they didn’t want to be around me either. The years following felt like I had to do a lot of apologizing for my behavior but I’ll admit that it hurt that some of those people just abandoned me. If anything, it showed me who my true friends were, as cliche as that sounds.
As for school, I only ended up missing a week but I did have to drop out of all of my dance classes and I was replaced in the play that I was in. Essentially fired from it, which was distressing, but I went on to do many more shows in later years. There was a complete feeling of inadequacy. I wasn’t able to keep up as much in my major. I almost had to drop out or take a couple of semesters off because I didn’t know if I could keep up. It’s hard when you’re sick with rare diseases and other chronic illnesses, because hopelessness is a typcial feeling. I thought I was going to have to give up everything I loved in life: activities outdoors, rock climbing, dancing, singing, acting, painting, and even reading. Feeling those slip from my grasp made me hate my body more and more for not doing its job.
Finally, something stuck. After months of trial and error, I found a treatment that worked for me. My two-year anniversary with my Pseudotumor has come and gone. I graduated college, two minors and all, and even started a podcast called BrainFart (fitting title for what my life is now), which has helped me find new ways of being positive and new ways of contributing to my newfound community.
I’m glad I’m not in that headspace anymore. It took time and it still takes practice to go easy on myself and love what I have. I think it will be a lifelong practice that I have to deal with but it’s better than the alternative of giving up. Is my health perfect? No. This girl has a laundry list of diseases that decided to tack on after my initial diagnosis. Am I still trying and working to find the best normal for me? Absolutely, and it doesn’t look like I will stop. As difficult as this time was for me, it molded me into a new person. Some parts for the better, some for the slightly not better, but all parts me.”
This story was submitted to Love What Matters by Maddi Albregts. Follow her on Instagram here and her podcast here. Submit your story here, and be sure to subscribe to our free email newsletter.
Read more inspiring stories about people living with chronic illness:
‘I went into anaphylactic shock and had to be given adrenaline to keep me from dying. My body turned red and I started to pass out. She had to speak to me through the doorway.’
‘I love when you are healthy, and can play with me,’ my son said. That CRUSHED me. I was forced to observe my son from a distance, watching his life from afar. I couldn’t join in.’
Do you know someone who could benefit from this story? Please SHARE on Facebook to let others know a community of support is available.