I remember the first time I connected with other autoimmune encephalitis patients on a Facebook support group. At the time, one of the problems I faced other than my AE was isolation. My family and friends did not understand what AE was or what I was going through because I didn't always "look" sick. What I felt in this support group was a community of people who understood me and went through much of the same things I was experiencing. Then I joined the HESA Facebook support group. It was heartbreaking and yet filled me with such love for these people I had never even met. The next time I felt this was reading stories from patients and caregivers in HESA's first book, "Understanding Hashimoto's Encephalopathy" 2013. There was pretty much nothing available online at that time and reading people's stories had me bawling (in a good and healing way)- at that the time I also had a really hard time reading and comprehending but this was worth the effort.
Eventually, I was asked to volunteer for HESA and our first video conference, I mean I couldn't stop crying at seeing these people I spoke to so often and had so much respect for. But SEEING them, that was something else I wasn't ready for and I can't really explain the feeling except my heart felt like it would explode. I was talking to them from my phone at a family gathering and my mother and sister were all like "are you okay?" "what's wrong with Sally?" Last year's symposium we were so blessed to do with other encephalitis organizations with an audience of medical professionals was so wonderful and not just for what we accomplished but I got to see people I volunteered with in PERSON. Hugs and kisses ensued! I was literally shaking with joy!
Recently, I had the honor of attending the first ever World Encephalitis Day Conference in Dallas, Texas. What made it so special was that it was organized by 6 different encephalitis organizations which had never been done before. All of us had the same goals to raise awareness of all types of encephalitis. We had a whole weekend of adult and pediatric doctors speak, some brain injury rehabilitation specialists, a PGA golf pro who had encephalitis, an infectious encephalitis expert, patients and caregivers spoke as well. There were also two group discussion sessions; one for patients and one for caregivers. It was just so amazing.
Yet, I had a lot of hesitation going. In fact I told Susan, HESA's Executive Director, I wished I could go as HESA's rep as Vice President but there was no way I could go alone. My major reason was my problem with confusion and fatigue. My husband would always guide me around on vacations so I never had to worry.
I was really worried about travelling and using up all my "spoons" before I even got there because there were so many things to remember. Registering for the event, booking a plane ticket, having the right things to wear, all the essentials to pack, the list goes on. The thought of navigating a major airport alone would be like dropping me in a jungle in the middle of nowhere. To a regular person, this may sound like no big deal but for me I was literally panicking about these little things as my memory is just so NOT good. The other reason which was even worse was the confusion I experience. On a daily basis (worse when I am tired or mentally overstimulated) I will forget where I am or where I am going even in my own house. Not your typical "senior event" this is an all day long problem which leads to major mental fatigue and I am exhausted many times from the moment I wake up or done doing anything various times a day especially at night. I have to rest and reserve energy for special events like dinners, holidays or other things often and many times I have to back out last minute. But this was different because I was representing HESA along with our new co Vice President, Maddy Boehme and I didn't want to disappoint them or the other groups and make us look bad and I was REALLY upset at that thought.
Well, when I got there, I did what I could and when I hit a point I felt I was getting too mentally fatigued, I retreated up to my room to rest or nap. Not one person judged me. In fact I eventually felt so comfortable with everyone I met, whether organizer, caregiver or survivor like myself, I felt gloriously freed. They ALL got me and I them. Even the sponsors from Quest Diagnostics were so amazing and they didn't have direct experience with encephalitis but wanted to learn which is so surprising to us all as companies don't usually express this type of enthusiasm!
This place felt like a safe haven for me and I made such connections with people I didn't even know or ever met. If you know me, you know small talk is the hardest thing for me and I'd rather stick bamboo shoots under my fingernails. There was a point I was interviewed by a professional videographer and I was so mentally fatigued, when asked what I thought about encephalitis or world encephalitis day my mind was a blank. I literally couldn't think of one thing. I can only hope whatever I blurted out is very well edited! I also missed the group photo that everyone made but I was too tired to attend.
Hearing Maddy (a survivor) and Angela (a caregiver) brought tears to my eyes. Maddy is a young 22 year old who has an amazing talent for speaking in public about her experience and just a natural. This young lady is going places! Angela has a son with HE who is in constant pain and drove with him from Louisiana to Texas despite an ER visit the day before just to share her son TJ's story. An NMDAR survivor who had relapsed so many times had played the most beautiful guitar songs. You can only imagine how she felt to do what she loved. What also brought a different kind of tears to my eyes was when patients went up and told funny stories about their encephalitis -which we almost never hear. I was belly laughing like they were professional comedians -but comedy on a whole new level! One particular guy with encephalitis told a story about driving a lawnmower that inadvertently ended up in a lake after he jumped off as he watched it sink or his story about lighting his gas burner with a blow torch. He is a highly intelligent engineer so his story about these little issues and how to accept the "new me" to make it funny is quite a feat and you totally feel for these people who are struggling with that "new me".
So seeing these people in person was something I will never forget-hopefully. Susan Foley recently came up with the idea of having video chats with people in our support groups. People immediately loved this idea. If you have gotten this far reading my long blog- you now know why! Seeing and actually talking to another person with any experience with encephalitis is something we don't normally experience when typing online. Yes, we will all have issues with how we look, sometimes someone will keep their video off feeling too shy about their appearance. I was hesitant at first and would make sure I had hair and makeup done but now, I will even just shower and show up on video chat meetings with no makeup wet hair. I look forward to one day meeting you as well!