When death stared me in the eyes 8 years ago this week, I never contemplated survival from encephalitis. I fast forwarded to milestones I assumed I’d miss … my son’s graduation, his career, his choice in who he’d marry. Being with my family during holidays. Traveling to new countries. Retiring.
If I were to survive, I didn’t consider the aftermath from encephalitis. I assumed it would be like, “oh yes … it was hell at the time, but I got past it.”
I never imagined meeting my healthcare deductible in the first weeks of the year … every year. As a healthy person before encephalitis, needing a neurologist, internist, cardiologist, and all the other –ists didn’t cross my mind.
On the 8th anniversary of surviving encephalitis, I’m at a crossroads of what “recovery” really means. As my symptoms improved for years, I assumed I was returning to the “old me” … energized, wanting challenges, capable of anything. But when I hit a wall of decline in the last year, I find myself trying to avoid defeat, wondering what “recovered” really means.
Do I have reasons to be thankful? Hell, yes!! I celebrate that I witnessed my son’s graduation. I cherish moments with family and friends. My travel is limited now, but I’ve crossed significant items off the bucket list. And I’m somehow maintaining my career, albeit with significant stress, fatigue and strain.
The crossroads? I feel like a lie every day. By medical definitions, I am a successful patient … employed, socially interactive, highly functioning … But I don’t feel like one. When family/friends ask how I feel, I change the topic. If I’m “recovered,” it doesn’t seem like I should have residuals that plague me … memory loss, fatigue, headache, blurry vision, aphasia, dizziness, unable to sleep without high-powered meds … the list goes on. I don’t think anyone without brain injury truly gets how much of a struggle it is to overcome “invisible” residuals every day, so I work extra hard to maintain my lifestyle and livelihood.
I remain perplexed in how to be true to myself without being a burden on others or discrediting myself. Does having 35+ residuals from this brain injury equal “recovery”?
In many ways, I have it together. I fool lots of people because the one part of my brain function that wasn’t impacted was speed of thought. I can cut corners because I can see around them. Yet as I prepare for yet another neurology visit next week, I am humbled by what my definition of “recovery” is or should be.
For fellow survivors, I’m interested in how you define “recovery.”
15 thoughts on “What Is “Recovery” from Encephalitis?”
Hi, I’m 8 years into recovery, I chose to give up work and focus on myself, as I am now plagued with seizures. It is this constant awareness of my conscience, that determines what I do now. Openess, honesty and facing reality, I feel like a better person, but not the old me, who was that girl? Fun loving and risk taking. The people in my life now are good people, family and close friends, I no longer waste my life with energy draining people, I often consider being back at work, just to take my mind off brain injury, this now constant in my life, I hit a wall at 2 hours, my brain gets tired, just as my lower back begins to ache on long walks. This is my body telling me what to do, body and mind needs rest, not more medication. I wish you well on your journey of recovery/discovery. Be patient and be with your inner peace, be happy. Xx
Becky, I am so on board with your comments. Surviving has been great! After all, I have a wonderful granddaughter who arrived after I was past the critical point. But losing my career? Losing my ability to have the functionality to play an equal role in making financial decisions for our family? Losing the ability to (reliably) drive? Being unable to travel safely alone? Yeah. It’s tough. Then again, I have benefited from being “set free” (???) from the demands of a successful, high-powered career, and I have been allowed (because of enceph) to play a vital role in my young granddaughter’s every day life. It’s been a mixed bag, that’s for sure.
I feel so lucky to have had what would I guess be deemed as a full recovery reading this. However has anyone else found personality changes occurred? I’m no longer as joyful, I have less patience for people or situations (to the point of rage) and am disinterested by people (which I often don’t hide). None of these things are who I used to be.
I have the same problems..
And I could literally sleep all day long.
Yes, I feel the same. I’ve always been challenged by lack of patience and getting easily bored with others due to having ADD, but I was able to hide it much better…and cared enough to make an effort. Now, five years post-encephalitis, self-editing for tact and “pretending” seem so inauthentic that it just doesn’t seem worth it.
I mourn the loss of joy that’s my “natural” way of being in the world, but I’m determined never to give up doing everything I can to re-cultivate it, and find meaning again, too.
Good luck to you. You’re not alone.
My daughter had Encephalitis when she was 6…from a mum’s perspective, reading this resonates enormously. I remember telling my young son, when my daughter and I spent so long in the hospital “it’s ok darling, as soon as we are out of here, everything will be ok, everything will be back to normal” little did I know. Thank you for voicing this Becky 🙂
It is not only the survivors who know about the residuals and baffling and frustrating recovery process of this devastating disease. I feel that as the caregiver/spouse of an E survivor, it is the caregivers who also “get” what recovery from brain injury entails. We are the witnesses and the ones who stayed. We are the ones who made decisions initially as well as currently in finding the right doctors, ignoring not so well meaning relative’s criticisms and even down right cruelties, dismissing the dire advice regarding nursing home placement of your spouse,worrying about finances and dealing with choking grief and loss while still trying to maintain a somewhat “normal” life with a partner who now views you as their savior and caregiver and house mate. We are the ones who handle all of the necessary dealings of everyday life; who deal with all of these changes on a daily basis as well as the profound heartbreak of losing the one person you knew for over 3 decades, fell in love with because of who he was–but no longer is–and yet somehow possess the sheer tenacity and bravery to not bolt even though the love of your once-life no longer remembers much of it. We are approaching year #6. I just miss him.
I am so sorry for all you have lost. It must be incredibly difficult. There is no recovery from that, except acceptance. Far easier said than done.
I’m lucky to be independent and more or less OK, but my husband was a saint while I was really sick. He did everything at home, and gave me IV meds at midnight for an hour every night for 6 weeks while working full-time and commuting two hours a day. I couldn’t drive for months (in California, eek) and couldn’t work more than a part-time, minimum wage job for two years. He busted his butt and drove me everywhere since we had no family close by and friends were gone at work most of the time.
We have huge debt now, and I know he suffers from trauma from everything that happened at that time.
Sending warm thoughts to you and your spouse. I hope things get better for you.
Becky, thanks so much for sharing this. I was diagnosed and treated quickly so I had, according to my doctor, ‘minor’ residuals and was able to go back to work after a few months of recovery at home. The only follow-up care he suggested was a psychiatrist because I ‘seemed depressed’. Everyone knows I forget a lot but nobody I know really has a clue as to what “E” has done to me. I am so glad I was able to continue working until I made 25 years at my job and turned 65. I retired at the end of July. Sometimes though, I am annoyed that I made it. It is very frustrating to try to remember something and the harder you try, the less you remember. My mind will go absolutely blank. I used to be very social and now I will not go to a party. I do not hear one individual speak; I hear a roar. I don’t complain to anyone about my headaches anymore because none of their well-meaning suggestions don’t work and I don’t want to explain my illness anymore. My neurologist keeps giving me games to play to help but I don’t have the concentration to keep up with them. I think now that the only reason I’m really glad I survived is because I am here to help others deal with their illness and residuals. Ingrid
Thanks for sharing your story. I also can’t differentiate one voice in a loud room, and also have had depression. I spend a lot more time alone than I used to. I get so tired. All the best to you!
I think recovery is very dependent upon your definition of the word. I survived viral meningoencephalitis. It inhibited movement more than all the other mental areas that encephalitis effects. In a way I can be seen as lucky: I may not be able to walk, but at least you can see that much. I have noticed little psychological things, but not much. It’s also hard trying to get back to where you were.
I meant to tell you… This one struck me especially. You are so good at being heartfelt. I’m certain that resonates with so many other survivors…
Twas great catching up last night. And I see now that this blog came out just before the awesome neurologist visit that has you feeling so much better! That’s a big AMEN.
See ya Sunday,
Kym Webster President *While You Work, Inc.* http://www.whileyouwork.net 214-924-0480
On Thu, Feb 4, 2016 at 10:34 PM, Becky Dennis wrote:
> Becky Dennis posted: “When death stared me in the eyes 8 years ago this > week, I never contemplated survival from encephalitis. I fast forwarded to > milestones I assumed I’d miss … my son’s graduation, his career, his choice > in who he’d marry. Being with my family during holiday” >
Im a 54 yr old male and I was struck with encephalitis December 2017 but wasn’t diagnosed till July 2017. I know I’m still in the early stages of recovery but my life has been severely impacted. My memory is horrible and don’t remember things that have happened within 2 weeks time. I have fatigue, vision problems, muscle aches, heart palpations to name a few. My personality has changed severely that I’m very emotional. Im still working but it has been a challenge. I rely on my wife to help me navigate this scary path I’m on.
thanks Becky for your heartfelt post. I can so relate. I am 6yrs post encephalitis and I lost my career that I loved and can’t drive further than around my small country town. Even travelling as a passenger and wearing an eye mask is a challenge and causes a lot of fatigue. Fatigue is my constant companion, some times its moderate and sometimes its debilitating. Can’t multitask at all so can only manage one person at a time. I have a lot of alone time which is good and helps me manage the whole sensory overload thing.
Amongst all this tho there have been many gifts. I enjoy a simple, uncomplicated life, I am grateful for everything, and have a heightened connection to family, friends, animals and nature. I have learnt to calm my mind and be present to each moment, and I no longer fear death. I no longer worry about all the things that don’t really matter because I need a quiet mind in order to cope and that has been a great gift, an uncluttered mind is heaven.
Its been a long road and who I used to be seems like a past life these days. I was a very confident, innovative creative artist and I loved my career and my independence to get in the car and go anywhere I want whenever I want I lost all that and had to grieve the loss, but I have come to know what really matters in life and that is a huge gift. I see friends rushing around and stressed out with the weight of their lifestyle in the modern world and I feel fortunate for what I have now…a peaceful, gentle life filled with the energy of Love.
Hi – I have just finished my first month at home alone since being discharged from nearly six months in hospital with Encephalitis. The last (nearly) three months of last year have been completely erased from my memory and I was left in a lock-up ward for stroke patients for two months – January through to March whilst a set of medications was determined for me and whilst the doctors tried to work out what the disease was, that was changing this strong, intelligent male, now fading towards “ghost-like”.
It is great being at home but as so many of you have stated, it is not the same “me” that existed before all this. My sense of humour has failed to function…to the point I stop people from telling me jokes as I hate having to put a sickly grin on my face at the end. I have however experienced such kindness and generosity from all my friends that I am often reduced to tears by the warmth and love that I have been shown. I am not ready for a return to work… and am contending with constant absences, stuttering on words, forgetting the flow of my thoughts and trying to steady my shaking hands, that work is farther from my mind than I figured on it being at this point.
I am still waiting to get a medication listing to control all the above and try to remain positive about my future. I still hope to get back to running in the hills behind my house for hours on end…at the moment a 2 hour walk is all I can manage. My love to anyone who posts here. Please do respond to anything that I have said.
Regards and love