About GOT ABI

In February of 2020 our 17 year old son suffered a massive hemorrhagic right sided stroke. The cause, to this day, is described as the perfect storm of events. He underwent an emergency lifesaving craniectomy where half of his skull was removed to relieve pressure.  He was in a coma for 2 weeks in the PICU. We were told, "He has a 50/50 chance of survival"  "Don't expect much" "He will never walk again". He underwent two subsequent brain surgeries, three months of in-patient rehabilitation, and 2 years of out-patient rehabilitation.

Thankfully the story doesn't stop there. 

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Jake beat the odds and not only lived but learned how to swallow, talk, and walk again. The stroke has affected his vision, left sided sensation, mobility, cognition and mental health but ​​Jake is a vibrant, well spoken, out going young man. He accomodates for his physical deficits but the invisible disability, the cognitive holes and fatigue, are what cause the greatest stumbling blocks.

 

​Got Acquired Brain Injury is a NJ 501(c)(3) organization dedicated to empowering young adults with acquired brain injury through socialization, education, advocacy and awareness. An acquired brain injury (ABI) is any brain damage that occurs after birth, rather than being a result of a genetic or congenital disorder. Damage to the brain during young adulthood can cause  significant changes in brain structure and function. It may affect development of emotional regulation, impulse control, social skills, executive function, and decision-making.  A brain injury during young adulthood can significantly impact an individual's ability to form and maintain healthy, intimate relationships, pursue educational aspirations or secure a stable career.

 

The frustration of living with an invisible disability can be overwhelming and emotionally draining. Here are some aspects of this experience:

1. Lack of understanding: Others may not comprehend or believe your struggles, leading to feelings of isolation and frustration.

2. Invisible suffering: Your condition may not be visible, making it difficult for others to acknowledge your pain or limitations.

3. Minimization: Others may downplay your experiences, saying "you look fine" or "it's all in your head."

4. Constant explanation: You may feel forced to constantly explain your condition, leading to emotional exhaustion.

5. Invalidation: Your feelings and experiences may be dismissed or invalidated, eroding self-esteem and confidence.

6. Hidden struggles: You may struggle to perform daily tasks or maintain relationships due to your condition, leading to feelings of guilt and shame.

7. Fear of judgment: You may fear being judged or labeled as "lazy" or "weak" due to your invisible disability.

8. Loss of identity: Your condition may impact your sense of self and identity, leading to feelings of loss and grief.

9. Frustration with own body: You may feel frustrated with your body for not functioning as expected, leading to feelings of betrayal and anger.

10. Desire for visibility: You may wish for a visible sign of your condition to help others understand and acknowledge your struggles.

Remember, living with an invisible disability requires resilience, self-advocacy, and support. Seek understanding and connection from others who may be going through similar experiences.

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