It is how we embrace the uncertainty in our lives that leads to the great transformations of our souls.Brandon A. Trean
Since my diagnosis and treatment of anti-NMDAR encephalitis four years ago, I’ve come to realize two very important things. First, there is nothing certain about this disease. It’s chaotic and random and defies any type of standardization. It manifests in different ways, for different periods of time, and with different results.
The second thing I’ve learned is that despite all the uncertainty, there is one thing that appears to be consistent with every patient and family affected: a willingness to share their difficult experiences with the disease. It’s not an easy task, but we endure because we know awareness leads to quicker diagnosis, better results, faster recovery and advancements in research for subsequent patients. The illness is slowly-but-surely gaining more notoriety as a result of the determined efforts of those affected by it. As a collective, we’ve been featured in newspapers, local television stories and national and international documentaries. We’ve written books, authored blogs, opened chat rooms and raised funding for research. Along with the other members of the community we’ve built, I have celebrated the strides we’ve made as a group, and I have optimism for future opportunities to bring awareness to the general public.
There is just one problem: We are not telling the whole story.
Despite the numerous and varying ways we are affected by anti-NMDA as individuals, for some reason, our stories all seem to end the same way…like a Disney movie, tied in a neat little bow…happily-ever-after and magically all better. Perhaps, the unabridged ending isn’t as sensational as the onset of symptoms or maybe our innate human desire for a “happily-ever-after” simply overrides reality. Maybe it’s a matter of time allotment. Regardless of reason, the messy, ugly, hidden truth is that most often, the diagnosis is not the end of the story; it’s just the beginning.
I’m not saying the ‘patient-disease meet cute,’ or dramatic diagnostic climax parts of our stories are not important aspects; they just don’t add up to a complete story in an (unfortunately) non-fairytale world. And I’m certainly not placing blame when I say this — my own story, when featured in a Discovery Channel documentary, ended similarly. What I AM suggesting is that we’re not doing the story justice, we’re not really helping others understand the whole picture by glossing over the significant, often brutal, recovery process that comes in between diagnosis and the jaunty end credits.
With that in mind, I’d like to share what recovery was like for me – which, as I’ve mentioned, may not be exactly how it happens for someone else, because recovery time and process can be nearly as different as the people who go through it. Regardless, I hope it helps.
Brain injury recovery can take 6 months to several years to forever. Recent studies are showing that the brain is ever-evolving, adapting and learning throughout our entire lives, indicating the potential for continued improvement long after we thought possible. However, the time immediately following brain injury treatment can be an unforgiving and challenging process where you can easily get discouraged and lose momentum. Consider all of the knowledge you’ve retained throughout the course of your life – memories, skills, hobbies, procedures, education, names, faces, vocabulary and more. It has taken years, your whole life-to-date, to gather all the data that forms who you are. If the whole database of your brain crashed, how much would you be able to recover? And how long would it take to re-learn, re-train and remind your brain of everything of importance? This is the enormity of the task your body takes on during recovery.
Upon the onset of anti-NMDAR encephalitis, I was fortunate to be admitted to one of the leading teaching hospitals in the area – which can mean more resources – with a variety of different backgrounds and experiences to draw from; more research; and sometimes, more advanced treatments and studies. Because of a previous autoimmune disease, I was already taking immunosuppressants and my medical team had taken initiative to begin to treat my symptoms even before the official diagnosis, about 2 weeks after being admitted. In some ways, I may have had a head start in beating this illness – and I have since learned that many are not so fortunate when it comes to available medical care and resources. But, even with timing and a plethora of resources on my side, I got much, much worse before I got better.
By the time the initial high priority treatments were completed, my brain had ‘forgotten’ how to walk and how to perform simple daily living functions like brushing my teeth and going to the bathroom. I could barely talk and when I did, it came out jumbled and confused and I often forgot things that had happened only moments prior. I didn’t recognize some of my family members, didn’t know how old I was, where I was or how I got there. I could no longer read or write or maintain focus for longer than a few minutes at a time. I had trouble sleeping and eating to the point of self-endangerment. I had gone from a well-educated, intelligent and thoughtful woman to a 33-year-old toddler in a matter of weeks. And truth be told, most toddlers have more self-awareness than I did at the time.
After 2 ½ months of plasmapheresis, IVIg, rituximab, and a litany of drugs that included anti-seizure, anti-psychotic, chemotherapy and steroids, the doctors had done what they could to treat the disease and the rest would take time and rehabilitation. At this point, the hospital could no longer justify keeping me as an inpatient even though I was far from ‘cured.’ On the flip side, my parents didn’t have the resources to give me full-time care at home. A rehabilitation facility would be best for my continued recovery – but they had trouble finding one that would take me. At this stage of the disease (as if both physical and mental complications weren’t enough) I had developed severe emotional deficits as well – mainly anger, and by that, I mean
A-N-G-E-R. The kind that makes those suffering from the disease appear to be psychotic or possessed. Of the many facilities that specialized in brain injury rehabilitation, most were unprepared to treat my behavioral issues (this is also why many anti-NMDA patients end up erroneously in mental hospitals). Finally, they found one that agreed to take me on and I was transferred there to continue my recovery.
The rehab facility quickly realized I was not like their other patients. Any number of stimuli could set me off and compromise any progress made that day – noises, lights, too many people, the wrong food, a passing comment. Initially, I was moved into a secluded wing of the building where they could close off the double doors to the rest of the facility and, essentially, leave me to work through my crazy. I may have started out with all the normal adornments of a hospital or recovery room, but before long, the room was stripped down to the bare essentials: No TV or music (it only seemed to fuel the hallucinations that plagued my every waking minute). No cell phone (I made eerie late-night calls and sent random, nonsensical text messages to the various friends, family and co-workers saved in my phone directory). Nothing on the walls (removed after one particularly bad episode where my pounding on the walls caused the clock to fall off and break). No photos without supervision (I had adopted a nervous habit of folding any paper I could get my hands on into teeny, tiny squares and/or completely ripping it to shreds). I was under constant supervision and that feeling of being trapped did little to ease the disease-induced anxiety and paranoia.
Over the next month, my recovery seemed to take one step back for every two steps forward. But, my outbursts lightened up and there were longer periods of time between them. When I was able to stay engaged, I began various forms of therapy. Physical therapy centered around increasing my endurance and strength through walking, yoga or Wii games. Occupational therapy was focused on tactical skills and self-care, which most often meant computer sessions and real-life tasks such as cooking, hygiene, and finances. Speech therapy activities were about memory, vocabulary, reading, and general communication. I also attended group therapy where we were encouraged to talk about our experiences and learn how to cope with the mounting losses to our personal lives.
After a month of inpatient rehab, I was discharged to the care of my parents, continuing outpatient rehab three times a week. At this point my behavior was much more controlled; the hallucinations were gone and I was improving at a steady pace. But even though I ‘appeared’ more and more like myself, the unique personality that made me, ME remained hidden beneath the rubble of destruction the disease had caused. I spoke very little (if you know me at all, you’d recognize how uncharacteristic and significant that was). Most of the time, I just didn’t know what to say. My brain was working so hard to heal that it had little time to pursue other interests. My memory was still very flimsy and I felt utterly lost all the time. It was difficult to make choices or handle complex conversations. The time I was able to spend in crowds was limited – a busy restaurant or noisy grocery store could be extremely overwhelming and even disabling. I lived on a strict daily routine, where any unexpected disruption could aggravate the sensitive balance I maintained in order to function as an adult. With the support of my family, I continued at-home therapies – computer games, word games, books and exercise.
Eventually, I found myself cracking a rare joke and beginning to form my own opinions once again – bits of myself starting to re-emerge as some of the anxiety faded. I still couldn’t drive and had not returned to work. During one of my follow up visits, one of the doctors said I shouldn’t drink – perhaps should never drink alcohol again. And, for some reason, after all I had sacrificed, this one restriction was where I decided to draw the line. No glass of wine after work, no happy hour with friends, no Sunday brunch mimosa? Hadn’t I suffered enough? They had gone too far.
In retrospect, and in contrast to the much larger losses I endured, I can see this stubborn insistence for what it was – me grasping onto one small bit of control in a world where I had none. Eventually, I made a big enough stink about the “prohibition” that I was finally rewarded with an adult beverage one Friday night…which in all likelihood I probably didn’t even finish. Ironically, even after I was cleared for all of that, I never really went back to drinking much. It appears that after spending so much time in my own self-induced altered state, I’ve lost my taste for it. Nevertheless, fighting for that small piece of freedom stirred a feeling of empowerment that became the first important step in finding my way back to myself.
Five months out from diagnosis, I was physically on the right path but still emotionally fragile and deeply depressed. I had only just begun to realize the severity of what I’d been through and I struggled significantly with the black void that sat stubbornly in the place where memories from the previous months should have been. This enormous feeling of loss weighed heavily on my heart and I broke a bit more each time I added another piece of my life to the tally of losses suffered as a result of the disease I didn’t know who I was anymore. And on top of it all – I was both physically and mentally EXHAUSTED. My body was drained all the time. I slept more than I was awake. In a brain injury recovery, your body is using every bit of energy it has available to recuperate, the littlest things can wipe you out. A shower, a flight of stairs, a difficult conversation, a quick outing – all compounded the constant fatigue that consumed me.
Eventually, I started to snap out of it and I pushed forward. I re-learned how to drive – just like I had done over 15 years prior – on my dad’s manual transmission with his careful guidance. I finally returned to work after more than six months of leave. Initially, I only worked for five to six hours a day and I slept as much as I could before and after. There was little time for much else. For that first month back at work, I felt like I was starting all over. I was self-conscious and unsure of myself. Honestly, I faked my way through more than one of those days, nodding politely and fighting to stay focused and aware. I often escaped to the bathroom, where I could close and lock the door and sit on the single chair placed in the corner of the room and just close my eyes for just a few moments. I was lucky to have the support of my manager and co-workers – they gave me confidence to keep going.
I moved into a place of my own again two to three months later – with a few stipulations. It had to be a ground level unit so I could avoid carrying anything up and down stairs because I was still weak and unsteady. I hired a monthly cleaning service to help keep it germ-free for my compromised immune system. Recovery had seemed to come to a standstill and I assumed I hat hit my plateau – I was about 85% recovered a year after entering the hospital and figured that just might be as good as could be expected.
That was one time, I was grateful to be wrong. I was pleasantly surprised when my passion for all things artistic and crafty reappeared and I found I had enough energy to take up some of my old hobbies, allowing me to continue to heal in whole new ways. Since then, I’ve realized that injury or not, we never stop improving and growing. (Cue Rocky montage music here). It’s a part of a life well-lived. Embracing that concept has led to new experiences and skills for me in subsequent years – online dating, purchasing a home, attempting a 5k, creating and writing my blog.
Four years out, my journey with anti-NMDA is still not a neatly tied bow and still doesn’t quite warrant jaunty end credits. I still struggle with reading and concentration and I’m forever searching for the right word. My balance is consistently off and I get worn out easier than most – especially when the weather is extremely hot or cold. Some days the brain fog sets in again and I have a minor flare up. Some days my anxiety feels like it will strangle me and others the migraines keep me in bed. But, I know what to do when these things happen and I know it could be worse, so I’m OK. I see more good days than bad and even though the process has slowed significantly, I like to think I am still getting better… Every. Single. Day.
These days, my “group therapy” comes from the network of amazing brain injury survivors I’ve connected with over Facebook and through organizations like The Anti-NMDA Receptor Encephalitis Foundation and the Autoimmune Encephalitis Alliance. I still play strategy and word games to exercise my mind and this year I’ve taken up both swimming and meditation, which have been good for my soul. I’m learning peace and acceptance of the life I have.
Brain injury recovery can no doubt be a long and arduous journey, to say the least. You have to remember that it’s never going to be black and white, it probably won’t be easy, and your path may not follow a straight line. But also remember that every small step is a victory and YOU get to decide what your happily-ever-after looks like. You must never stop wanting to better yourself.
It always gets better if you try – and that’s the whole truth.
My 16 yr old son was just diagnosed after a brief illness that started as anxiety, led to psychosis, insomnia then to mutism. He is being treated at a great children’s hospital , has had steroids, IVIG and plasmapheresis so far. Making great strides but I worry about his Neuro future. Scary
Hi Liz: Sounds like you guys are on the right path. Best wishes to you and your son. We have a great community of survivors that are here to listen and offer support if needed. Please feel free to reach out. Sending positive thoughts to you and your family!
Well written post and sheds a good light on the horrific journey anti nmdar takes a person on. My daughter is 16 has been unwell for the last year, endured 8 months in a tier 4 mental Health hospital and is now home with minimal support from the local community because of the lack of understanding for this illness. Our fight continues to get more support.
Sending positive thoughts for you and your daughter. Hang in there! ?
I agree with your dad, best post yet! ❤️
Even though this has taken so much from us,I feel like it’s also brought me so much by the people I’ve gotten to know as family. I love all of you❤️ & am beyond thankful for each day we keep fighting. ?
Very well written and informative. It is heartbreaking to read but also very uplifting to know how far you have come. May you continue to get stronger and improve.
I didn’t complete my comments…this is an amazing article and the best one yet on this blog!
Wow, amazing article, the best yet on this blog!
Thank you for your blog posts. I 2 yes our post diagnosis and many of the things you talk about as still struggling with I do too. I am glad to hear some of these things are normal. Again thank you for sharing your story….
Glad you find it helpful, Candice! Best to you on your continued recovery!
Enjoyed reading your story, as you say everyone seems different. My daughter is experiencing this AGAIN after 23 years but she wasn’t diagnosed or treated then as it was unknown. Only now is she having treatments available.it has severely affected her muscles/nerves this time and she is unable to do much physically. Very hard to have it again but have to stay positive. I have to be her fulltime carer (at 74 not what I expected to be doing)
I’m so sorry to hear that your family is going through this again – especially after such a long time. Hopefully the treatments available now will offer some relief. I’ll be sending positive thoughts your way. Take care!
Erica, as I read your blog, I could see my daughter in my mind eye. Like you and so many others, she continues to grow and improve, even 6 years out. The same, yet different, living a new normal. Thanks for being such an inspiration.
P. S Please forgive my spell check!!!
Thank you! Best wishes to you both!
CONGRATULATIONS Erica! Thank you for continuing to shine a bright light on all the facets of anti-NMDA! May the muse continue to accompany you on your healing journey.
Beautiful! I love you!
Back at ya, Lauren! ?