My New Normal: Reflections & Advice on Life After Autoimmune Encephalitis 20+yrs later

“She probably has a month left before she is in a persistent vegetative state or dies.”

These are not words that you or your loved ones want to hear any time, but especially when you are only 25. Friends came to say goodbyes and the outlook was bleak. Just six months prior (during the Summer of 1995), I was happily living in San Francisco with friends, had completed my MBA, and was ready to land my dream job. But that all suddenly changed.

During those first few months of my “mystery” illness, my brain started to fail me but no one knew why. Some memories are foggy, but others I can still clearly recall, like not finding simple words like “pen” (even though I knew what it was), not being able to write my own name, or waking up on the ground because I had just had another seizure.

There were countless doctors, tests, long hospital stays, experimental treatments, and brain surgery. When I was finally diagnosed with Rasmussen’s Encephalitis (a rare form of Autoimmune Encephalitis) the prognosis wasn’t good. The doctors said people don’t recover. But then to my doctor’s shock I did…and then relapsed…and then after chemothephy, more experimental treatments and more hospital stays I got “better” again.

A lot of crazy things happened while I was sick, but what is more important is what came next. How do you move forward when your brain fails you and your identity has been stripped away? Where do you go?

Here are some of the lessons I learned and some words of advice I can share from my experience of recovery over the past 22+years.

DON’T FEEL GUILTY FOR SWEATING THE SMALL STUFF. Once I got through the really tough parts of the illness there was a feeling like “wow, I didn’t die…I’m going to appreciate everything. No more sweating the small stuff. I’m enlightened now!”

But it’s not so easy. When you are healing from a brain injury, the small stuff can still be difficult to process. And it is challenging because most people don’t know your brain is recovering. Things that shouldn’t seem very difficult just are. I have never been a crier, but the first year after my relapse I cried all of the time. Mainly out of frustration – I couldn’t count, I got lost all of the time, and words that I wanted to use just weren’t there. I try not to be as hard on myself when I don’t react the way I think I should or that I used to. And I always try to appreciate how lucky I am for being alive.

YOUR BRAIN CAN HEAL AND REPAIR

Hopefully you all know this already. But 20+ years ago this wasn’t a widely held belief. Luckily now there are many more rehabilitation and support programs available for brain trauma and recovery.

Immediately after my symptoms began to subside, I pushed my reluctant parents to help me get back to living on my own in San Francisco.  But once I got there I didn’t know what to do with myself. My driver’s license had been revoked (due to the seizures and parked cars I rammed into while having one) and I clearly wasn’t ready to jump back into my post-MBA job search. So I focused on creating my own activities to get my brain working, like sitting in on business classes (which I had already taken) and learning new activities from ceramics to fly-fishing. I was fortunate to have my family’s financial support, but even without these means, there are lots of ways to activate your brain and to help create new wiring and connections.

TAKE YOUR TIME & (KEEP) LEANING ON
FAMILY & FRIENDS 

For those of us who have the luxury of supportive family and friends, I recommend using them. I know, they have already done so much for you and have been through so much. But they understand that getting back on your feet takes time. If they are able to help you, let them do it. They know who you are, that you’re not a lazy person, that your brain is still healing. You will likely place much tougher expectations on yourself than your family and friends will.

Also take advantage of the resources and support that are now available. When I was sick, we never heard of another single person who had ‘Autoimmune Encephalitis’ (they weren’t even sure it was an autoimmune disease). So to have a resource like the Autoimmune Encephalitis Alliance is a blessing. I am so happy that it now exists so that families no longer have to go through this experience alone.

YOU WON’T BE THE PERSON YOU WERE BEFORE. BUT THAT’S NOT ALWAYS A BAD THING

Going through a life threating illness changes you.

I’m not sure what my life would have looked like if I didn’t get sick. Some doors will close (maybe temporarily) but many new ones did (finally) open for me. If you are able, use this time to do and learn things that you didn’t think were an option before or you didn’t think you had the time for. For me, I spent my first year volunteering. I walked around downtown San Francisco passing out meals to homebound seniors. And because my communication skills were still lacking, I gravitated to areas that didn’t require strong verbal skills such as learning graphic and web design. And eventually, I was able to re-enter the job market by combining some of my old skill set -marketing/business – with my newer skill sets – graphic design and passion for volunteering. I have now enjoyed a long and successful career in nonprofit marketing.

ON A SCALE OF 1 TO 10? AND WHAT IS THE NEW NORMAL?
I was often asked this “scale of 1- 10” question by doctors. I never really knew how to judge the scale. I would say, “hmm… I’m definitely feeling better so I think I’m a 7 now…or maybe a 7.5?” The problem is that there isn’t a magic day when you wake-up and think “I’m finally a 10 again!” And what is your new 10 anyway? You really can’t know yet. And for me, it did take time – in fact many years – to reach my “new normal.” But I also did so many things during that time: I took classes, dated, volunteered, traveled…and lived my life.

For so many years this illness was such a constant part of my identity and who I was. As I reflect on this very strange part of my life now, one of the biggest realizations is that the illness no longer defines me. It forced me down specific life paths and for many years it was difficult to separate the illness from the person I had become, but over time that faded. Now I just occasionally think about it. Many of my friends and coworkers have no idea that I was ever sick – and not because I don’t want to discuss it – it just doesn’t define me anymore. Now I’m a mom, wife, nonprofit consultant, and friend who is very happy to still be around living a pretty wonderful – and normal – life. 

Tracey Ardalan Roden was diagnosed with Rasmussen’s Encephalitis (a form of Autoimmune Encephalitis) in 1995. She has been symptom free for almost 20 years and currently resided in Santa Monica, California with her husband and energetic 5-year-old son. She has worked in nonprofit marketing and social enterprise for the past 17 years.