Since Encephalitis happened I have been feeling as if I have been grieving. However, I find it somewhat unfair for me to be feeling as if I'm "GRIEVING" since I'm very much alive. I mean I've seen people around me grieve their loved ones and I feel like they truly have something to be sad about. They won't be able to ever see their loved ones, to bounce ideas around with them, to have a laugh and to share joyful moments with them. But here I am, standing on my own two feet, feeling empty, feeling as if a big part of what made me ME is forever gone or lost into the nothingness. So if I'm not grieving, what is that deep sense of loss that I am so often experiencing? Why do I desperately keep looking for answers to explain or justify this sense of loss? Although encephalitis left some brain damage on its way, why can't I fully turn the page on an illness that's been and gone?
What's Ambiguous Loss?
That's when I came across a term called "Ambiguous Loss". As if a light bulb moment, things suddenly made sense. Ambiguous loss is a type of mourning process but it also differs from the typical grieving process since it remains without closure. In my case, I know very well the root cause of my ambiguous loss. See I miss the person that was, the abilities that were, I miss being able to simply dive into life without having to plan for the fall into the abyss that will follow. The "ambiguous loss" definition I came across peeked my curiosity and got me reading quite a bit about the work that Pauline Boss did on Ambiguous Loss. In my eyes, anything that makes me feel more normal is worth finding out more about. If I can understand ambiguous loss better, perhaps I can handle this feeling of deep loss better and equip myself with the right tools to better manage this feeling that tends to follow me around. So I did just that...I read and read and read.
Types of Ambiguous Loss
I've learnt that there are 2 types of "ambiguous loss", physical i.e where a person is "gone but not for sure" (e.g.: giving up a child for adoption, disappearance, etc.) and psychological i.e. where a person is "here but not here" (e.g.:Alzheimer's disease, autism, brain injury, etc). Both these types of ambiguous loss leave the family or individual in a state of limbo as they can't know for sure what is fully happening, but at the same time, they offer hope that some things may return.
“Ambiguous loss can freeze the grief process. People can’t get over it, they can’t move forward, they’re frozen in place.” —psychologist Pauline Boss, PhD
In my case, not knowing whether my cognitive abilities will fully return or if this new baseline of mine is likely to remain, better or worsen creates a lot of stress and the lack of clarity on the future state of my weird wonderful brain hinders our family decision process quite a bit. We've seen so many specialists to try to gain more understanding on what may be happening to this brain of mine, but each time we are confronted with a lack of answers. See, the brain is a very complex organ and there is yet so much to be discovered and to be understood. So unlike death where you can draw conclusions on what's happened, where you can acknowledge and celebrate the person that was, we are yet to be presented with clear explanations, we are all too often stuck in a mode where we keep chasing the person that was and where most people around us are afraid to acknowledge the person that was as well.
What helps overcome Ambiguous Loss?
From all my readings, resilience seems to be a bit of a key word. But how do you build your resilience? Pauline Boss  has come up with six guidelines to help individuals live better with their underlying feeling of ambiguous loss:
Finding meaning: How do you make sense of this senseless situation?
It took me a while to figure that one out, but for me, opening up about my own experience with encephalitis and brain injury, about the ups and downs that come hand in hand with this new reality has ignited a desire to raise awareness not only of encephalitis & brain injury but of many of the secondary effects e.g.: depression that we have to deal with on a daily basis. Through publishing my blogs, I've noticed that although each one's journey is very unique, I've realized that so many people can relate to snippets of my own experience. It's all been very comforting to me and is helping me make sense of my own situation.
2. Adjusting mastery: Recognizing that you can't control everything
Following the acute phase of the viral brain inflammation, I noticed pretty quickly that things were different, that things weren't coming so easy anymore and that I now had to deal with things that had never been part of my world prior to the illness. For a long time I kept holding myself accountable to my prior standards, I kept pushing so hard to achieve what I used to be able to do, only to fall short most of the time. I thought I was failing at everything that I was undertaking. I didn't want to acknowledge that the brain had taken a hit and that I no longer had control over some things. Once I recognized that my brain had a brain of it's own, that I had lost some control over what my dear brain can cope with on a daily basis, I gradually started to adjust my expectation. In adjusting my expectations, I was no longer failing all the time and little by little, I started gaining some control over my situation. I started winning again.
3. Reconstructing identity: Who am I?
This one is still a work in progress for me at the moment. So who am I? I am a daughter, I am a sister, I am a partner, I am a mother, I am a friend and I am an employee. The core of me is still the same. Deep down I still very much like all of what the old me used to undertake so opening up to new opportunities & traits of my personality hasn't and isn't always easy. That being said, I am also learning a great deal about myself through dealing with this weird wonderful brain of mine. I've discovered empathy, I've learnt to appreciate way more all the small things that surround us, I've learnt that JOMO (Joy Of Missing Out) can bring me so much more joy than FOMO (Fear Of Missing Out), I've learnt that slowing down is a good thing, I've learnt to better navigate boundaries and a big one for me has been to recognize that whether we want it or not, we are all very vulnerable, that vulnerability doesn't correlate with a position of weakness.
4. Normalizing ambivalence: Mixed emotions
I've found that this step comes in pair with reconstructing my identity...which as per above is still a work in progress. Mixed emotions definitely come left and right. Reconstructing my identity has made me realize that identifying where to next is far from being an easy task. Some days I don't like what the new me has brought me, some days I just truly miss the old me. Some days I just hope life could resume as if encephalitis had never happened, but I know and fully realize that I've been handed a different set of cards and that I just have to do the best I can. Going from happy to sad or from calm to angry and maintaining an equilibrium between the two opposite emotions can be somewhat of a challenge. It's not always easy to make sense of those mixed emotions, but you have to keep trying because giving up isn't an option for me, all part of my make up. I suppose that's where the whole building resilience comes very handy aye.
5. Revising attachment: Letting go while remembering
I am definitely getting better at going back and forward between the old and new me. Until encephalitis happened, the old me had worked really hard to build me up to be who I was. Over those years I developed sets of attitudes and assets, I undertook some awesome experiences and lived life to the fullest. I believe that so many aspects of the old me are allowing me to deal with my new set of circumstances the best way I can. The old me was great, but as time goes by, I'm realizing that the new me is pretty cool too. Letting go doesn't mean forgetting all about the old me. I think that letting go is all about learning and discovering what are the true foundations of the old me which will in turn help me support and reconstruct the new me. You can still hope for the best, but you have to be realistic enough to accept things for what they are at times as well.
6. Discovering new hope: Imagining a new way of being
Nowadays I find hope to be a very tricky word. In a ever changing world, I think that no one can actually sit still and that our hopes too may be ever changing. Our plans have to continuously evolve in order to adapt to new sets of circumstances whether they come to us through an illness, an accident or whether they are imposed on us.
One of my new hopes is to keep finding the courage to talk about issues that are important to me. Writing has definitely been a way for me to deal with "ambiguous loss". Addressing sensitive topics in my blogs has helped me make sense out of this senseless situation. It has helped me to constantly re-adjust to my new reality, it has helped me deal with all the mixed emotions and it has been a way for me to try to rebuild myself. By publishing my blogs and putting myself bare in front of others, I've come to realize that so many people around the world can relate to my own experiences. I am not alone anymore, ambiguous loss is all around us and takes many shapes. If me sharing my experience can help one person, then it was worth writing about. Can this truly be classified to be a new hope? I'm by no means an expert but I feel that at the time being, it is for me.
How do you deal with ambiguous loss? How do you build your resilience?
I'd love for you to share your thoughts on this as I feel there is much to learn from each person's journey.
Other blogs that might be of interest:
#ambiguousloss #encephalitis #encephalitissurvivor #encephalitisawareness #encephalitisrecovery #braininjury #resilience