- Esty Rosenfeld
Breaking the Silence: Destigmatizing Medical Conditions
About this series:
Living with a chronic or life-threatening illness brings a whole host of challenges. Oftentimes, these challenges can be invisible. This makes it harder for others to be compassionate and helpful. People who experience medical issues can feel like their life is out of their control, which can make it really difficult for them to reach out for help.
The goal of this series was to raise awareness about medical conditions through storytelling and thorough information. Knowledge is power. Hearing and understanding people’s experiences can help you be better equipped to respond the next time you encounter someone with a medical condition.
It will hopefully make you more aware and sensitive towards others struggling. This can even be in the simplest form of avoiding the generalization and misuse of medical conditions. Doing so diminishes undermines and devalues what individuals with those conditions experience. For example, using expressions like you’re retarded, I’m depressed, I’m so OCD can be hurtful to those who have medical retardation, depression or OCD.
According to the CDC, 795,000 people have a stroke every year in the USA alone. Just about every 40 seconds, someone in the States has a stroke and someone dies of a stroke every 4 minutes. It is a leading cause of serious long-term disability. Despite its prevalence, roughly 38% of bystanders knew all of the major symptoms of a stroke. Strokes require immediate care. Some strokes may be treated exclusively within the first 3 hours from when the symptoms start.
Patients who receive treatment are more likely to either fully recover or live with less disability than those who don't. Knowing the signs and symptoms of a stroke can save lives.
Did a Full 180
I was at work, working at a gym as a receptionist. I was talking to two clients and explaining our memberships to them when they started tilting their head and looking at me strangely. I was trying to figure out why they were doing that.
I started realizing that when I was talking, it sounded like I was eating my words. I asked them if it was okay with them if I switched to French and they agreed. My French started out okay and then I started eating my words in French too. My words were not coming out properly. They couldn't understand me so they started giggling a little bit. They told me that it was okay and that they would come back another day.
I turn to my computer and I’m staring at it. I’m starting to panic because I was stuttering. I asked one of my friends, who was working out, to come and see me. He asked me to repeat some numbers with him to try to get the hang of my speech back. After a few minutes, it came back a bit. He had thought that maybe it was caused by stress because I had two exams the next day (which I hadn't studied for.)
He went to continue working out and I went back to my desk to continue working. I looked at the screen and I realized that, although I was smashing down on the keys, nothing was typing. I thought it was maybe the computer that was broken. I went to go grab my phone but it just slipped right out of my hand. I picked my phone with my left hand, I tried to open it with my finger-ID but it wasn’t working. Essentially, my hand wasn’t working and went completely numb. I used my other hand to type into the search bar “why can’t I feel my hand?” I started panicking because I couldn’t understand what I was reading and I couldn’t feel my hand.
As this is happening, I slowly started falling off the chair. I hit the ground and my friend came running. When he asked me what I was doing on the ground, I just started crying. This part is a blur. I don't remember falling or getting back on the chair. He later told me that he was trying to get my attention. He started asking me simple questions to try to help ground me.
I started lisping. My lips started tingling. I was producing saliva and drooling but I couldn’t swallow it. I tried to eat but couldn’t lift my fork.
Closing time came around and I tried to clean up by putting the weights away. I was incapable of doing so. My friend helped me out a bit and then drove me home. I get home and go to my mother. I looked at her and said I don’t feel well. I was talking funny but she started laughing because she thought I was just joking around.
It’s Not all in my Head
The next day, my entire arm was numb. My mom called me and it felt like my face was being pulled in two different directions. My mom’s boyfriend (at the time) picked me up and drove me to the ER. They were looking at me like I was crazy because everything returned back to normal. It was as if nothing happened. The nurse told me that they were probably going to send me home because they couldn't find anything. Then, someone working at the hospital who had no medical training decided that they would try to get me a CT scan just to be safe. We get the CT done.
The nurse came over to me and told me that the blood test results came back. My numbers were a little wonky but they weren’t sure why. Then, the resident came to see me and asked me to come into a conference room. He told me that I had a minor brain bleed on the top left corner. I was told that they would give me some anti-seizure medications and that it shouldn’t happen again. The next minute, the main neurosurgeon came running into the room and told me that I had a massive brain bleed.
They had me do an MRI. They couldn’t see anything because of the amount of blood there. They didn't know what was happening or why it was happening. They only knew that I had a massive bump in that region because of the CT scan I took earlier. They said it was a cyst.
On the Tip of My Tongue
I was hospitalized for about two weeks. In that time period, I had unbearable headaches. I couldn’t walk. I had another episode in the hospital where my right side went numb again. On one of the first few days I was there, they came in and told me that they were going to keep me in the hospital. They were trying to wait and see if my brain would somehow reabsorb the blood. They told me that I would be taking a second MRI in a week’s time. It was an important region of my brain and they were trying to avoid surgery at all costs.
The first day I was hospitalized was the scariest because I was having memory lapses. I lost my French and a lot of my English too. The only language I could remember was my native language, which I only spoke as a child. My English came back a few days after and my French only returned after a month's worth of speech therapy. The resident printed out a list of my Facebook friends. She would choose random people and ask me who they were, where we first met and how I knew them. I had friends from elementary school who I didn’t recognize. It was as if someone had taken white-out and erased parts of my life. I would know that I was being asked questions. I was supposed to know the answers too but then would forget that they had asked me a question altogether. That’s how bad my memory was. With time, my memory came back.
For the first week, I couldn’t get out of bed without a walker. I needed help using the bathroom. Not being able to move was also really scary. I was being seen by a physiotherapist to try to help me to regain my strength.
Slow & Steady
Luckily for me, the bleeding started going down. The process was very hard and slow. My doctor had asked me if I had done any strenuous sports or fallen down the stairs. I told him that I was in school and during that two week period prior to this incident, I had stopped all exercise to focus on my exams. He told me that it looked like I was hit in the head by a baseball bat, but without a fracture. After the week passed, they did another MRI. As the bleeding had stated going down, they were going to let me go home on the condition that I wouldn’t do anything.
It was really hard. I would look at my phone and feel like puking. Too much light or noise would bother me. I started going to a rehabilitation center. They were helping me organize and schedule my life. They would give me tasks to test my re-organizational skills and my memory. They made me play word games to try to reboot my language skills. I was in rehab for eight or nine months. During this time, I had to drop school, quit work and stop going to the gym. This all took a really big toll on my self-esteem.
Towards the end of rehab, I enrolled back in college, but I started the semester late; it was all really overwhelming. I was also a little ashamed of the fact that I was in rehab. I didn’t tell anyone to avoid questions and assumptions people would make about me. I would try to study but couldn’t focus and I couldn’t play video games, which really got me down.
I started slowly going back to the gym, with my doctors permission. It was important for me to start prioritizing my mental health. He told me my physical health would improve as a result. I wasn’t allowed to lift weights that were too heavy and I definitely couldn’t push myself.
Ran Myself Ragged
A year later, my doctor asked me if I was stressed at the time. I replied affirmatively because I was working three jobs, in school, working out every day, trying to maintain a romantic relationship and a social life. I was trying to manage everything and I wasn’t sleeping enough. He told me that my level of stress may have been so high that it caused a cyst I had in my brain to rupture. The bleeding was considered a hemorrhage. The hemorrhage covered up areas of my brain causing me to have seizures. The pain of the cyst rupturing had caused my nervous system to shut down and glitch. I had symptoms of a stroke because of everything going on.
I had no long term side effects to all this. Thank goodness the cyst was not cancerous. I additionally have another cyst in the back of my head which was non-cancerous as well. They were probably there from birth and I must have either done something to rupture them or it ruptured because of the high levels of stress. My doctor told me that if there was no more blood, I wouldn’t need to see him anymore.
Left me on Read
People were upset at me that I was no longer talking to them, nor texting or calling. I tried to explain to these friends what I was going through but they just couldn’t understand. I also didn't want to share what was going on in my life, which really bothered them. They made my incident about themselves. My immediate family, however, was very supportive. My mom was my caregiver so she was dealing with my appointments and giving me medications. It was pretty hard on her.
I’m Better on the Other Side
This whole incident made me a lot more studious. I learnt how to better balance my life more efficiently. I started becoming more in tune with my health and I started becoming more appreciative of what I had. It made me more mature because I realized how close I could've come to death. I’m not scared of dying but I am scared of not experiencing everything I wanted to experience and not spending enough time with my family. If I were to die tomorrow, damn it, I spent all of my time in school.
The name and all identifying details have been withheld for privacy.
If you'd like to share your story, email email@example.com with 'breaking the silence' as the subject line.
The following information is from the CDC & Harvard Health Publishing.