This is a quote from my therapist and I honestly challenged her when she said it..
I persisted,
“But there are times when I’m completely alone. Whose shoulders does it land on besides mine?”
and.. “Sometimes it’s my burden to carry even if it’s heavy”
or.. “it’s not anyone else’s to carry either”
I know I look like I got hit by a bus, but It wasn’t until this recent hospital stay that I actually understood what she was saying.
No one is MEANT to carry all of it at once.
I woke up and I thought about the fact that the people I loved had to come to terms with possibly losing me once again. Hearing Ruben say that this hospital stay was the “hardest for him to see” made me sad. He used the words “unrecognizable” and “not you.”
To be honest when I opened the camera for the first time and looked at myself, I thought the same thing.
I’ve been fighting so many battles at once. So many thoughts flooded my brain, but I couldn’t process it all. My brain was literally overwhelmed by prolonged, abnormal electrical activity that it couldn’t shut down on its own and I had to be resuscitated. Medically, I went into a Status Epilepticus. I stopped breathing and I was closer than ever to SUDEP (sudden unexpected death in epilepsy).
My mom, who had just been given another harsh diagnosis herself, called my sister to give her the news of my health status. When my sister told me this, I tried to count how many times exactly my friends and family have had to come to terms with a possible devastating reality.
How does anyone carry that weight? There are some things that you truly are incapable of understanding the weight of unless you’ve gone through it. There’s a lot I’ve been carrying in my heart and head recently. We’ve had to call the police multiple times. I’ve never had to deal with something like that before. This has always been a safe space for me. I was dealing with physical infection and the stress of keeping me and my family safe. Sometimes it’s just too much for your brain to process (especially when you have Epilepsy). Cont. in comments #EpilepsyAwareness #StatusEpilepticus #SUDEPAwareness #ChronicIllnessJourney
Living with epilepsy is more than managing seizures; it’s an ongoing challenge that affects every part of life. From my experience, the most overwhelming moments come not only from the physical symptoms but from the mental and emotional battles that accompany such a chronic condition. Status Epilepticus is a terrifying medical emergency where the brain is caught in a prolonged seizure state. During one such episode, I experienced the reality of how fragile life can be—my brain’s electrical activity spiraled out of control, causing me to stop breathing and putting me dangerously close to SUDEP, an acronym for sudden unexpected death in epilepsy. This frightening event made me confront not just my own vulnerability, but the profound impact it has on loved ones who fear for my life. Mental health and emotional resilience are often sidelined in conversations about epilepsy, yet they are crucial. The stress of coping with repeated hospital stays, the worry of family members, and the internal feeling of isolation can be a heavy burden. I found solace only when I understood that no one is designed to carry such weight alone. Connecting with others who understand the intricacies of chronic illness has been essential to my healing process. Calling the police multiple times due to unforeseen events added layers of stress I had never anticipated. Each call highlighted how complex and multifaceted living with epilepsy can be—it's about managing physical symptoms and the unpredictable nature of the condition alongside maintaining a safe and secure environment. Through sharing my journey openly, I hope to bring awareness to the realities of epilepsy and chronic illness, not simply as medical conditions but as life-altering experiences. This includes recognizing the importance of community support, professional help, and self-compassion. No matter how heavy the burden feels, reaching out and connecting with others can lighten it. For anyone facing similar struggles, remember that your feelings are valid, and you don’t have to carry it all by yourself. Support networks, therapists, and peer communities are there to share the load when it becomes too much. This perspective was a game-changer in my recovery and continues to be a guiding light on difficult days.
Oh my gosh, you poor thing. Hope you get better soon.