Moment of Truth
Julian Einsel, age 21, 7/2021, Photo, by Vicki
Many of you may or may not know that I have a child who has Autoimmune Encephalitis (AE) from tick-borne illnesses.
For the past week, I have been struggling with how to give a small glimpse of the complex, unimaginable and heart wrenching journey my family has endured. All in 5 minutes. I have literally done over 40 takes to make a video for an Autimmune Encephalitis conference taking place February 9-11, 2022. (Medical Doctors are the target audience).
The raw and painful nature of the topic made it more difficult to narrow our story down to an elevator pitch.
It was a challenging process to make the video. Yet, it was incredibly healing. By looking back on the past 8 years, I am reminded how far we have come, how blessed we are and how many others are suffering.
This is the elevator pitch of our journey. Thank you for taking the time to read it!
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8 years ago, it began with a 104 fever, a diagnose of a mono-like virus and a 14 year old whose life went from being full of sports, school and social events to anxiety centers, eating disorder clinics, ICU’s and wheelchairs.
The first major issue was getting a correct diagnose for a kid who was wrestling at 148 weight class in the spring and weighed 102 pounds by the end of the summer. It didn’t help that the first 8 months of Julians illness, everyone believed it was strictly a mental issue. Many doctors failed to look past the symptoms and find the root cause. Even my own mother believed Julian suffered some major trauma we didn’t know about.
In my heart, I KNEW it was a physical issue. Kids don’t just wither away over night after a fever.
Second, Mental symptoms can be more debilitating and traumatic then physical ones.
If you ask Julian, he will tell you, he would choose the physical symptoms such as…
Violent full body convulsions that, if you were watching from a distance, you might believe he was being tased, because it looked like someone is who being electrocuted. It often took three grown adults to hold him down to keep him from falling off the bed or hurting himself.
He has also lost his ability to use the lower half of his body and has spent months in wheelchairs re-learning how to walk on three different occasions.
His neuropathy has been so unrelenting, he has a pain threshold most people couldn’t imagine.
Yet, he would choose these physical issues as well as others like night sweats, headaches, muscle weakness, loss of fine motor skills and insomnia over the mental problems.
The mental issues are no joke.
Julian has hallucinated dead bodies on our living room floor.
He has had such severe panic attacks he would refuse to come out from under his bed, let alone leave the house.
The separation anxiety that he developed was so severe, if I tried to take a shower, he would be sitting outside the bathroom door. waiting, and anxiously talking to me.
His body dysmorphia would cause him to over exercise to the point of bleeding.
His mood swings were so unpredictable, he could be laughing one minute and throwing a glass, or worse, the next.
Sometimes, we would have to help him with simple tasks, such as reading a menu, because his brain fog would be so debilitating.
The other side of mental issues is the societal stigma.
It’s much easier to visually see and understand how sick a child is when they come home from the ICU in a wheelchair. When this happens, friends and neighbors show up with movies and casseroles.
It’s much harder to talk about how sick your son is when he tries to jump out of a moving car or off a roof or cuts himself on purpose. Then, friends and family, don’t respond because its not something I, unfortunately, was to embarrased to pick up the phone to tell someone.
We NEED to change this narrative around mental symptoms.
In our case, these were symptoms of undiagnosed brain inflammation from a treatable bacterial infection. How many others are suffering with mental symptoms that are not life long and are treatable?
Lastly, we need medical pioneers to research and find treatments that are approved.
The first time Julian was hospitalized in an ICU for 10 days and came home in a wheelchair, the hospital told us there was NOTHING they could do. NOTHING.
To this day, it kills me that this was the response from a major Childrens hospital. I feel for all the kids whose parents don’t have the resources to find the correct diagnoses and treatment for their kids. They have little choice other then take them home in a wheelchair, with little hope for improvement.
Fortunately, It’s been a slow process for us, but we’ve made lots of progress. After not attending High school in person, Julian is currently going to Culinary School and living in NC near his adorable girlfriend he has been dating for 4 years. He is still receiving monthly IVIG treatments and comes home every month, but his quality of life is much much better. Even a year ago, we couldn’t have imagined this outcome.
Over the past 8 years, I have witnessed a lot of progress with respect to awareness, treatment and understanding of AE. The Childrens hospital I spoke of earlier, even has an AE clinic now. (Thanks to my Mother)
I have faith that in the future people won’t have to suffer for months or years to get a proper diagnoses or be dismissed because their mental and physical symptoms do not fit into a neat diagnose box.
I also have faith, that anyone, regardless of resources will get the proper treatment and access to needed medical treatment.
Thank you, from the bottom of this mothers heart, for taking the time and putting in the effort to look into these complex diseases and issues. I am hopeful for the future.