Portrait: Mariana
My name is Mariana Hibert, I'm Mexican and I'm a social worker. My brain injury story begins in my adolescence when I was diagnosed at the age of 19 with Takayasu's Arteritis. a rare genetic and immune disease affecting the circulatory system. It's seen as an arterial inflammation causing an obstruction or aneurysm towards any vital organs. In my case, both of the carotids were occluded, so the blood irrigation of the brain was insufficient.
I used to have migraines, fever and dizziness, but I didn't take care of these symptoms because they were all common in different diseases. One day, after I had the worst migraine ever, I started losing strength in my right arm and dropped a bottle of water several times. I knew something was wrong.
I couldn't walk or speak, and I remember thinking: “Why is this happening to me?”.
Getting a diagnosis
I got hospitalised and my mom received a wrong diagnosis by the doctors: “It's just an allergy caused by the Aspirin”, they said. And I DID NOT take any aspirin at all. As the hours passed by lying almost unconscious, my mom decided to take me to another hospital as I was getting sicker.
These precious hours wasted could have been the solution to my stroke as later told by my neurologist.
Subsequently, I got admitted to the Hospital General de México. After studies, doctors concluded I was having a cerebral stroke due to Takayasu's Arteritis. The damage done was in the left side of my brain, so the right side of my body (arm, leg and tongue). This left me disabled with aphasia, dysphasia and the loss of my long-term memory. During surgery, the medical team got into my arteries through the groin and went all the way up to my neck with a catheter. Inside my right carotid, they pumped up a balloon and inserted a stent. I was terminally ill, so my mom was devastated. Fortunately, the neurosurgeon told my mom: "Everything is going to be alright”.
Recovering from the stroke
He told my mom I should get rehabilitation at Instituto Nacional de Rehabilitación due to the lack of it in the hospital. There, doctors and therapists gave me occupational, motor, memory and language sessions for a year due to the level of rehabilitation I needed. I learned how to remake a sentence, speak again, walk, eat, to communicate with others and write with my non dominant hand. It took a lot of hard work and effort to create new synapses but with patience, it was possible. I entered using a wheelchair and left by the door with a walking stick. Thanks to the wonderful doctors, therapists and of course, thanks to my mom who has always been there for me.
Life after the stroke
Later, I carried on with high school. Before the stroke, I used to have many friends… but after the stroke, I had only a few. Then, I did my bachelor's degree in social work in the UNAM, inspired by the questions I had in my mind about this disease and the fact that nobody accompanied my mom while I was sick.
I told myself: “I'm going to make a difference”.
Afterwards, in my first job, I STILL had questions. So, I made the decision to leave my job and do research for my Master‘́s degree in social work at the UNAM. The topic of my research was about five Mexican women patients' paths of life during the pandemic. Some of the findings indicated that they suffered:
- Diagnostic odyssey,
- Invisible disability,
- After-effects such as fatigue and pain,
- Stigmas and discrimination (job/mandate on gender issues),
- Lack of medicines (including Yentl Syndrome) and lack of therapy provided by the government (mental health/grief),
- Lack of knowledge of Rare Diseases by health professionals, family and friends,
- Wrong symbolic interactionism due to a rare disease1, etc.
Where I am now
Nowadays, I'm having trouble finding a job. When I talk about my medical situation, the headhunters usually reject me because they lack understanding about this disease or they tell me: “You are way too expensive for the company”. On the other hand, I’m in remission. My vertebral artery has expanded itself. It has compensated for the loss of my carotids, thanks to the medication and the will to survive.
I would like my story to go further by making this manuscript useful for any patient who feels alone in this world. And for politicians, to let them know that we have a voice and won't be silent. Improvements for the patients and awareness of rare diseases (such as campaigns which prevent brain injury) can be done according to the UN Agenda. This way, the world would be a better place for everyone.
Thanking my support system
I give thanks to my family, especially my mom who has been there at every step. She’s provided physical and emotional care and loved me at my worst.
Thanks to my best friend, who understood me when I couldn’t speak and who stood by me when I felt alone.
Words of advice to other survivors
All that happens to you, helps you to become a better person. In my case, it helped me to become more human, to appreciate and value the simple things that life has for me.
SameYou is dedicated to improving recovery services for brain injury and stroke survivors. Your donation can:
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Provide essential rehabilitation services.
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Raise awareness about the challenges faced by survivors.
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Advocate for better support systems.