brain injury from a teenager's perspective: an interview with sydney marconi
5 minute read
sydney marconi says that after her traumatic brain injury diagnosis, it would have helped a lot to have peer support, more knowledge about tbi symptoms and advice on navigating the healthcare system.
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sydney marconi is a young métis woman from ottawa with ancestral ties to kapawe’no first nation, treaty 8. at 15, sydney survived a car accident that left her with catastrophic brain trauma. we asked her about her experience as a young person navigating the system after a traumatic brain injury (tbi).
(read her mother’s story about being a caregiver to a family member with a tbi here.)
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after your diagnosis, what did you need that you didn’t have access to?
sydney marconi: it would have been beneficial to have a peer support worker/advocate or to be a part of a peer support group. i would’ve liked having people around me that could understand and relate to my situation. this is especially true since i sustained my brain injury as a teenager and i felt quite out of place and alienated from the rest of my peers.
as well, it would have beneficial to have someone explain to me, simply, what occurs during a brain injury, the common symptoms to look out for, how to disclose my injury, and how to navigate the healthcare system. since i was a minor at the time, these things were more so discussed with my parents. i didn’t feel like i had any sense of self-determination.
further, it would have been helpful to know more about the expected route of treatment. for example, i didn’t understand all the different professionals involved and their purpose. also, knowing that not all health care workers that are referred are always the proper match, or right fit, would’ve also been nice to be aware of.
while all these things would have been helpful, it’s also important to realize that these things can be very overwhelming, daunting, and hard to process for someone with a brain injury. so, these things would be better explained over a period of time, having check-ins to ensure they have been grasped.
what challenges did you experience when it came to your health and quality of life?
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sydney marconi: my life was definitely set on a different trajectory following my brain injury. i began having issues surrounding concentration, anger, aggression, impulse control, memory, low self-esteem, self-worth and efficacy, cognitive fatigue, depression, anxiety, overstimulation, indecisiveness, brain zaps/sharp pains, overwhelm, aphasia, sleep issues, etc. since this time, i still have many persisting issues that make it difficult for me to maintain steady employment, relationships, and complete general day-to-day activities (ex: self-care, getting groceries, keeping up with housework, etc.)
what challenges did you experience when it came to getting treatment?
sydney marconi: when i first began working with health care professionals, they would always ask me, “what brings you in today?” these kinds of open-ended questions caused me so much anxiety and i never knew how to respond (didn’t they know why i was there?). i would end up responding with “i don’t know” because i didn’t really know what services the professional was offering. this made me feel incompetent and they would often write this in their report as a symptom of my brain injury. i felt judged and misunderstood.
i also felt like there was a lack of communication between health care practitioners. with each practitioner, i would have to recount my experience of going through my car accident, my brain injury and related symptoms. this was very frustrating for me and, for some people, can lead to re-traumatization. all i wanted to do was move on from that day. recounting it numerous times brought me back to a place i was trying to leave behind.
many of the assessments and treatments i was given weren’t strength-based, but focused heavily on what was wrong and giving me bleak prognoses, which decreased my motivation to follow through with appointments. for example, i was told i would likely not graduate high school with my peers, let alone attend university (which i
did). i was also told i would likely engage in risky sexual behaviours and activities, be impulsive, defiant, and have trouble maintaining a job. no one ever explained to me the reasoning for this though, and it made me question who i was as a person. was this the only thing that people saw when they looked at me?
did). i was also told i would likely engage in risky sexual behaviours and activities, be impulsive, defiant, and have trouble maintaining a job. no one ever explained to me the reasoning for this though, and it made me question who i was as a person. was this the only thing that people saw when they looked at me?
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further, i felt like no matter what i said, my parents account of what was going on was always weighed heavier than what i had to say. i always felt like i was always saying or doing the wrong thing. if i disagreed with anything my parents stated, the health care worker would say i was in denial and that it was a symptom of my brain injury.
what challenges did you experience when it came to navigating policies and procedures?
sydney marconi: the policies, procedures and processes were, overall, quite complicated. my mom had to jump through many hoops to get me the services i required. my mother applied, on my behalf, for the disability tax credit three times. i was rejected each time. it took her reaching out to mps, social media, et cetera, for them to review my application and approve it. and it was only through research that we even knew about this benefit. i really owe a lot to my mother for taking the lead and advocating for me.
do you have any ideas for solutions?
sydney marconi: it’s difficult to come up with a one-size-fits-all solution, as everyone is different. but i think there needs to be more awareness, understanding, and knowledge available to the public surrounding brain injuries. empathy, compassion, active listening, and validation can go a long way when trying to recover. it is not a linear process and it’s important not to dwell on “setbacks.”
i also think the idea of “if you don’t use the services, you lose them” needs to be changed as it is not always possible to maintain constant appointments with multiple professionals, while also having time for yourself and recovery. i also don’t think that anyone should be forced into getting treatments they don’t want to participate in. for example, i was told i had to go to rehab, even though i made the effort to quit binge drinking and cannabis use on my own. but my lawyer told me if i didn’t go to rehab, i would run the risk of losing my lawsuit, or not receiving funds from my insurance for other services. i felt like what i had done was a waste of time and under-acknowledged. my actions didn’t seem to make any difference.
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if you could wave a magic wand and change anything you wanted, what would that be?
sydney marconi: allow clients to go at their own pace, have more patience and understanding, listen and believe what your clients tell you is their truth, advocate for them while including them in the process (build confidence and self-efficacy), have more available information on what to do and look out for following a brain injury (for clients and caretakers), and don’t force or manipulate clients to participate in treatments they are clearly not interested in.
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