I have been writing this article for a few months now. I have been waiting to understand more to publish it, but I realized that I will probably never completely understand how mental health works. So, I finally decided to publish it because now is as good a time as any. Everything I know now, I only understood in retrospect and through a lot of external help. Some of it might sound loserish or even outright ridiculous. You will understand why later in the article. But this is my experience of mental health after brain injury, and it is similar (in severity) to some of the brain injury survivors I spoke to.
We already know that the probability of depression after brain injury is high. But managing mental health after a brain injury is much more complicated than that. Through this article, I list some incidents, and you will see that I had varying levels of insight based on numerous factors. Sometimes, I knew that something was not right, sometimes, I knew what was wrong, and the other times, I had no idea that something was wrong. My biggest challenge with managing mental health is to know where the disease ends and I begin. Isolating the symptoms is often hard because often times, it feels like my personality and attitude needs mending, and ‘self’ is the hardest thing to change.
If my life were a train, there are times when I’m outside looking at it as an indifferent bystander. Other times, I’m on it and though I see it falling into a big ditch, I let it fall without taking control. There are the rest of the times when I’m holding the brakes as hard as I can to stop it from falling into the ditch.
The funny thing is, it is a toy train like in Tom and Jerry but the ditch is very real and so is my experience of falling into it.
Pseudobulbar Affect (PBA)
Although I already talked about my experience of PBA, this was the first complication with my mental health. By complication, I mean something that is out of my control and needs some kind of intervention.
I’m lying in my bed and staring at the roof and wondering how nothing about my life matters anymore. I’m just staring with absolute apathy with no desire to do anything – to eat, go out, work, see people, or talk to anyone. The only thing I can think is how there’s no point to anything, to my existence.
I’m out with friends at lunch and one of the guys made a comment that was mildly funny. Everybody else smiled and left it at it. I laughed uncontrollably for 5-7 min, and everybody wondered what was wrong with me. There was nothing to laugh about. I tried to explain to myself how it could have been funny but I couldn’t.
I’m in my bed all day with no desire to get up. It’s probably 6 PM, and I’m hungry and thirsty. My head is aching from a migraine and appetite. But I’ve no motivation to get up and drink a glass of water. My mind is looking at this and thinking if this is what hunger feels like.
I’m sitting on the sofa and crying uncontrollably for 40 min. I was not sad. I just wanted to stop crying so that I could go to work and act normally. I was angry that I couldn’t stop crying. When I couldn’t stop crying after 35 min, I called the nurse line for help. They said there’s nothing they could give me to stop the episode after it begins but I might have to go on medication to prevent future episodes.
Episodes of PBA are sudden and post-surgery, they always (100% of the time) occurred with migraines. It ranges from uncontrollable crying to laughing to apathy. But how I actually feel inside is so different from how PBA makes me act. I didn’t want to start another medication, so I’ve been focussing on reducing migraine episodes.
I’m on a monorail from the pharmacy, and the door opens. My mind is racing… and I visualize jumping off it and killing myself. It was horrific. I bring my mind back to the present and reassure myself that it’s probably medication.
I recently got diagnosed with moderate depression. Until now, it was too complicated to get an assessment. Though I have been in psychotherapy for a long time, they couldn’t assess depression due to the factors such as medication, PBA, seasonal affective disorder (SAD), and cognitive impairment.
I first experienced depressive symptoms due to the side effects of a medication (verapamil) last year. After I recognized the symptoms, I stopped taking the medication and thought the symptoms would reverse. They did get better for a while but never completely reversed. I did not realize that I had depression until it got very severe and I started having suicidal ideation. As much as I recollect, my baseline mood was very low for more than three months before that. I thought it was probably stress from personal and professional life. The decline in mood was very slow. I could barely see any difference in a week or two. I lost appetite and then the desire to do anything. Activities such as cooking, taking walks or seeing friends that I used to enjoy didn’t bring me any joy. So, I cocooned myself in my flat and stopped doing any of those things. Eating felt so hard that I didn’t see a point to it. I started wondering what the point of surviving the tumor was. It made feel like this second chance was wasted upon me, and if only someone else got to live instead of me, they would have probably used it better. Life felt miserable and hard every minute. My mind would continuously race to the thoughts of self-harm when I saw any objects. I tried to clear my head of any intention of dying, but I didn’t experience any joy in living either.
I’m sitting on the same sofa and crying controllably for an hour. But this time, I think I’m sad about something. I don’t even call for help. After hearing about this, my fiance says, this is probably PBA. You were fine yesterday, and the reason you are sad about did not affect you all this while.
Depression validated the PBA episodes, and when I cried uncontrollably, I couldn’t see that there is no reason why I should cry because my existence felt like a thing to cry about. Of course, both worsened with episodes of migraine. I lost all insight into myself. I did not know that I was sad or gloomy or that I lost interest. I just existed like a fool on the hill (to quote the Beatles :D).
A few strategies that helped me keep depressive symptoms in check:
Going to therapy – About the same time that I was diagnosed with depression, I was also diagnosed with cognitive impairment. So, I was in cognitive and psychotherapy at the same time. It really helped to take inputs from both and use them to gain insight into my psychological and cognitive functioning. I realized that cognitive impairment acted almost like a barrier to insight and suspended my judgment. So, I did not look into myself or check in to see how I’m feeling. I just felt like everything is hard. I felt small and everything too big to tackle. Cognitive therapy helped me with breaking these tasks (my life overall) down into manageable pieces. Psychotherapy helped with managing emotions while going through this.
Eating at least two meals a day – It might sound too simple, but it really helped with feeling better. When I had no desire or energy to cook, I bought bagged salads and forced myself to eat for 5 min at lunch and dinner time. It might sound ridiculous, but it took a lot of effort to bring the food to my mouth. After a month of eating 10-12 meals a week, I tried buying food (ice cream!) that I used to like to bring excitement into eating. It took a long time, but I don’t hate eating anymore.
Exercising – the answer to everything in life! The only thing both my therapists ask me every week is – “how many times did you exercise in the past week?”. We all want and try to exercise more. But when I had this severe episode of depression, I did not even try.
Socializing – my homework for every therapy appointment was to schedule fun things to do with friends and report what I did the previous week. It might sound silly that I had to do it as a job. I treated eating, exercising, and socializing as medication. Like I take a pill for migraine prophylaxis, I ate, exercised, and socialized as a prophylactic for depression.
Reducing the time I spend on my phone and social media – With so many appointments (therapies and physicians) a week, I had very few days when I could get any work done. But those days were taken up with migraines, side effects of new medication, and my slow pace of working. Not being able to work at my usual pace affected my self-esteem and comparing myself to other people who are accomplishing things I’m unable to, made it worse. So, I decided to remove all social media applications from my phone and focus all my time and energy on getting better.
Slowing down at work so I could spend enough time on recovery – There was no way I could keep up with all these appointments and work 40 hrs. I couldn’t even process much at a time to do quality work. So, I worked at a much slower pace. I’m very grateful to my advisors for being so supportive through all this.
Networking with other brain injury patients – I went on a networking spree for a fortnight and spoke to other brain injury patients who have been able to return to work and have a sustainable level of function. Talking to them gave me a lot of hope. I learnt that recovery happens even after a decade and I’m only three years post-op. It gave me something to look forward to. I have a fantastic mentor who checks with me every week, and it has been beneficial to keep me motivated.
Wearing jewelry that I got as presents served as physical reminders to the people in my life who care that I live and reminding myself that they will love me irrespective of what I accomplish.
Setting small goals – I did these over a period of five months. I only set one goal for a week and tried to achieve that. Some goals were as small as cooking two meals a week.
Externalizing depression and having physical reminders – After I did all the above, I started having some level of insight, and I could differentiate my ‘self’ from the disease. I hung a few visible reminders like the one below so I could see them first thing after waking up.
This was the complicated thing of all. I was diagnosed with mild anxiety. Being unable to stay on top of things and not doing chores like laundry or dishes made it very hard to stay in the moment. My mind was constantly racing to something I didn’t do or couldn’t do and imagining the worst things that could happen because of that.
Depression:“What’s the point of anything? There is nothing to your life and you can’t do anything now. “
Anxiety:“You’re the worst. Everything is worst. You have done nothing and bad things will happen because you have done nothing”
PBA: BLANK and then TEARS!
It worsened due to medication (zonisamide), and the hyperactivity caused a different type of brain fog that made my brain feel like pulp. I couldn’t think straight, and everything is bigger than it is. No combination of exercise, meditation, or sleep could fix it after a point. The hyperactivity disrupted my sleep, and I’d be up wide awake in the middle of the night. Lack of sleep worsened everything. I experienced a panic attack when I was out at a restaurant. I felt like I couldn’t breathe and everything felt like impending doom. I just stopped the medication, and I’m waiting for the side effects to reverse.
A few strategies that helped me keep symptoms of anxiety in check:
Making to-do lists for the week and setting 1-3 tasks for each day. When I look at the list, it makes me think that I only have two things to do today for the next ten hours. It really helped me calm down.
Keeping a log of the number of meals, hours of sleep, work I finished, exercise, and mood. This helps me reflect on the day and see that I’ve been able to accomplish something. Checking off the tasks for the week also made me feel so relieved. I tried to externalize all the thinking and keep my mind as blank as possible.
Meditating also helped immensely.
It was imperative that I stop everything and work on improving my mental health because I’m the only person who can tell what is happening in my body and mind and get help if I need to. This is probably true of every disease but more so of brain injury – if the person who is going through it doesn’t self-advocate and work for recovery, the recovery stops and in some cases, the disease might worsen. In my case too, when I lost insight, nobody else could advocate for me or tell what needs help. So, I desperately needed to get my mind back into my head and live again.
Of course, depression comes in waves, and I feel like the spring just begun (also literally!). My psychologist advised me to keep doing these tasks every day blindly, so I don’t get hit so hard by the next wave. For now, I can see how beautiful the world is after a long time.
“The tumor is in an inaccessible location so right now, the surgery might cause you more harm than the tumor.”
“The tumor might be operable. But the best case scenario is nothing will get better. we might be able to contain it and the damage it is doing to you. But that is your best chance.”
“The tumor is operable. Nobody can tell if it is malignant from a scan. It has to come out. Your impairment might reverse in some time. I’ve seen these symptoms reverse after the tumor comes out.”
——— After a few calls and a journey to LA ———–
“Brain surgery has its risks. Nothing might get better. This procedure might give you a disability. But we’ll do our best”
———- After what felt like a very long night, I woke up ————–
“The procedure is successful. You can go back to normal in 8 weeks.”
And I did! Eager to prove to myself that I can live a normal life and I can still think, I got permission to work full-time. Everything looked like it was working fine until I crashed again! I started to feel like pre-surgery in less than six months. After a lot of calls, scans, and procedures, they said that my body was rejecting the hardware they put in as part of the surgery.
Uh! Wasn’t it supposed to fuse with the bone three months ago?
“We suggest that you rest for a while until it has the time to heal. Else, we might have to go in again and remove the hardware.”
At the risk of losing everything, I went on a break again. For another four months. I came back feeling much better. The hardware and I were not angry anymore and my brain even started to work for another year or so. Then began debilitating migraines that would put me down for days. Each migraine would last a week and drain every last desire in my body to be alive. I had to start doing the one thing that I thought I escaped – taking medication. After six months of debilitating side effects, switching medications, convincing my healthcare providers that the side effects are actually due to the medication, I thought I found something that worked. It improved my quality of life significantly because I was no longer in pain. But it was such a low dose that the side effects were slow and silent too. I didn’t even know when they were all creeping up one after the other:
By the time I realized it (see lack of motivation), I already was too impaired to be able to work full-time immediately. I really hope nobody ever gets a brain injury or has to go through a brain surgery, but if you have to, I hope some of these things I learnt the hard way will help you through the process. If only someone told me this three years ago or if my doctors would have been honest and realistic about recovery based on the other patients who went through this, my journey would have been better planned, informed, and smoother.
Note: Everyone’s body, brain, injury, the manifestation of injury, and life circumstances are different. So, nobody can tell you what is best for you. I’m certainly not qualified to give you advice but these suggestions would have helped me tremendously and I hope you can take some ideas from my experience. I’m only listing these to help you plan your recovery better so you don’t have to crash and burn like me.
It is probably not possible to return to the pre-injury level anytime soon (or ever!).
Impairment could be very complicated and change every day.
Surgery is another form of injury your brain goes through albeit being a treatment. Surgery and medication will complicate brain injury. Your brain has to now heal from both injuries – disease (tumor/ cyst/ hemorrhage…) and surgery.
For an entire year, don’t try to accomplish anything. Just rest and let the brain take its time. You have the rest of your life to do all those things. Don’t trust anyone who tells you when you can go back to your regular life. Let your body tell you that.
Do not do anything for the first 3-4 months. By anything, I mean, even cooking, grocery shopping, driving or choosing what you have to wear. Just rest. The brain only heals during sleep. No amount of medication is going to help it. This feels like too much dependence but trust me, because I didn’t, I’m having to be dependent on others for much longer. I did not give my brain the time it needed to heal. Get at least 12 hrs. of sleep and take short walks in fresh air every day. Limit your screen time to less than 30 min a day (this includes TV and phone). Don’t read or write or learn a new language or participate in any task that is cognitively tasking. As much as possible, let your brain rest.
By this time, my body cocktail was a mess. All the hormones were flying all over the place. So, if you notice changes (weight gain/loss, mood disorders, irregular hunger cycles etc.), see an endocrinologist and get it checked.
Three to four months post surgery, try to start talk therapy. Have an established psychologist and try to attend at least three sessions every month. That could help with recognizing depressive symptoms early on. The probability of depression after brain injury is very high. Even if you are feeling better, don’t stop therapy for at least a year.
For the next 3-4 months (months 4-8 post-op), ease into a workout routine. Don’t lift any weights because they cause a lot of head pressure. Try simple cardio and build your stamina very slowly. I took a mindfulness class for eight weeks and that is the best thing I’ve done for recovery so far. There will be days when you feel like you cannot move. That is your body trying to tell you that you need to rest. Listen to your body constantly and rest. For the entire first-year post injury, you should get at least 10 hrs. of sleep. Try not to stay awake all day. Take 1-2 naps so you have the energy to stay awake. I was exhausted by staying awake in my bed.
8-12 months post-op, try to ease yourself into routine and cognitive tasks. Start with tasks such as reading 20-30 min (from a physical book or paper) a day and cook an easy meal a day. Try not to stack all your chores into one day. Doing laundry built so much head pressure that it made me sick for a whole week. Find a comfortable routine but make sure to exercise (walk/ jog/ tai-chi) for 30 min. and meditate for 10 min. every day. Exercising and meditating regularly could help with cognitive impairment and reducing stress. If nothing, being able to do those gave me a sense of accomplishment and kept me motivated about working on my recovery.
I regret not getting a neuropsychological assessment at the end of one year. I was busy trying to deal with everything physiological and honestly, if any of my healthcare providers suggested it, I’d have. I learnt one thing through this process – I cannot stop advocating for myself. The moment I stop that, my recovery stops. So, try to get any of your pre-surgery impairments re-evaluated at this point. It is important to know where you stand. This would accomplish two things – it will help you start rehabilitation and help you evaluate what changes you need to make in your life to live a happy, satisfactory, and hopeful life at a sustainable pace. Even you are not at where you want to be, you now have a rehabilitation plan to work on it. but
It could be overwhelming to talk to people sometimes but make sure to spend some time with family and friends. Having a group of people you trust, who have some understanding of what you are going through can make the process much better. Make sure to schedule some “social time”, be it a cup of tea at home or a meal at a quiet place or even just a walk in some fresh air could make a big difference. Do not isolate yourself through this process. Reach out to friends and explain to them why you can’t go to that party but request them to spend some quiet quality time with you.
I understand this a long drawn out plan but I think if only I took the time to recover, I wouldn’t have had to take so many breaks and have so many issues three years post-op. I don’t mean to scare anyone with this story. In spite of all of this, I don’t regret getting surgery one bit. It was my only option and my quality of life improved a lot (see symptoms).
Recovery is very complicated and it is possible that no matter what I did, I would have had complications. But this is a more optimal way of easing into everyday life and always remember:
Love yourself no matter what because you deserve it!
I made up my mind to use public transportation that day, something I haven’t done in the past fours years probably. I have to thank my friends for that (who are kind enough to give me rides because I still can’t drive!) but that day, I just wanted to prove to myself that I could at the least take a bus by myself and get home. It was a cold and misty Tuesday afternoon and I missed the next bus sitting in the rehabilitation clinic scrolling through my phone aimlessly trying to stop the tears from flowing down my cheeks. I just had a consultation with the neuropsychologist who told me that I have cognitive impairment, and the current impairment is worse than it was pre-surgery. She is a very kind and comforting woman who started the conversation with “If you have been feeling like something is wrong with you, it is not because you are crazy. Something is wrong with you.” She showed me graphs comparing my pre-surgery assessment when I had mild cognitive impairment and almost all areas of my brain function are performing worse than they used to. My IQ is under a 100. In my mind, I thought, “I think I’m officially stupid now. Can people tell?” I want to argue you can’t put a number on meta-cognition and I’m more than my IQ but when the assessment was staring in my face, I had a rush of emotions which I could mostly summate to feeling inadequate. But removing the tumor was supposed to stop the impairment and (hopefully) reverse it in some time. If there was one thing I hoped the surgery would achieve even if it was at the cost of my life, that was stopping the cognitive decline. I wanted to feel like myself again like I could think on my feet and read and write to a normal level of function. And there I was, at the same place all over again after three years of working very hard on recovery, eating healthy (mostly… can’t blame a girl for living a little!), working out whenever I was able to, resting whenever my body asked for it, trying to recover on my own without depending much on medication.
I would have pulled my scalp out with the hair because of how helpless I felt and I kept asking myself, “What am I doing wrong? If someone told me what it is, I’d do it right. It’s not anything I do. It’s just happening!”. I was trying to clear my head, keep listening to the neuropsychologist, and have a useful conversation with her as she continued, “I’ve never treated anyone with a pineal teratoma but I looked up some case studies in literature and there is evidence that tumors of this size are symptomatic and sometimes, the cognitive impairment could be permanent.” Firstly, I finally met a clinician who actually looks up case studies and believes that data because to a lot of my healthcare providers, clinical trials don’t mean much if it is not already in the textbooks and nothing if it is a case study. Secondly, if it was permanent which I thought some of it was, it should have frozen at the pre-surgery level of impairment. “I can’t tell you conclusively what is causing this. It could be a result of a residual tumor.” Oh! the glorified residue again. But it has been stable for the last three years and my neurosurgeon would argue that it is just scar tissue. “Or the scar tissue healing. There is also evidence in the literature that repetitive migraine attacks cause cognitive impairment or it could be because of the medication you are taking.” But then, these are two discrete data points three years apart. I have no data in between except my performance at work and a general sense of well-being to understand which of these factors likely caused the decline. The obvious question then was if it is going to worsen. She had an elaborate plan for treatment (neuro-stimulant, cognitive therapy, change in current medication) and then she said, “That is not where my mind goes immediately but you can never rule out the possibility. If this is degenerative, no matter what we do, these scores are only going to go down. We’ll repeat the assessment after a year and see.”
I reached home finally and looked at my apartment – piles of clothes all over, dishes in the sink that haven’t been done in over a week, groceries that are going bad in the fridge because I haven’t cooked in a while, things that I always look for but misplace them because of poor memory… I realized I have been living the life of someone with cognitive impairment already. I know this from working with carers of dementia and how they first found out about their care recipients’ cognitive impairment. Over the last few months, it worsened. I haven’t been watching TV for a while because that felt like a lot of work. But TV is supposed to be de-stressing and is meant for people to understand without causing much cognitive load. Over the past few months, I only watched a few episodes of a TV show I already watched. The only thing I’d do is sit idle and brood over why I don’t do anything. Honestly, sitting idle was the only thing that didn’t feel like an exhausting task. Doing everyday things such as choosing what clothes to wear or what to eat made me fatigued. There were signs all over the place, I just was not looking.
I was not looking because being constantly aware and listening to your body takes a lot of energy and is tiring. Cognitive impairment is interesting because when it starts, my mind always tries to attribute my inability to do basic things to stress or to the increased difficulty level of those tasks because it is very hard to look inside and accept the inadequacy. Through the days I lost in brain fog and somnolence, countless times I thought of giving up everything and running away to no clue where, I always thought that I have to focus and if only I focus more, I will be able to get stuff done. I just kept feeling miserable and like a failure who had no desire to achieve anything. Now I know, that was my body crying for help. My friends tried to talk me into not giving up. Looking back at it, now I know that it was the voice of my impairment that I was fighting. I thought it was me and how I feel now but there was the “regular” me, the voice that would have come out if my body weren’t going through so much of stress. It was there deep down and that was probably the reason why I didn’t do any of those impulsive things my helpless body asked me to do.
But when that happens for a few weeks, I should have realized that this is probably neurological. When you have no motivation to eat or cook or sleep or meet anybody and when you start ideating suicide but don’t even care about it because you are apathetic about life or death, you should probably realize that this is a medical issue. But I did not. In spite of my experience with depression, PBA, and cognitive impairment, I could not realize it because awareness is a conscious process and I took a break from it to live my life like a normal person.
Then how did I happen to get this assessment, you ask? That was serendipitous. I was working on developing a tool for reflection and self-awareness to help with brain injury recovery (ironic!) and my advisors asked me to pilot it with my own data. When I looked at the data and wrote accounts of my life for 30 days, it was clear that I needed help to function in everyday life. I’ve been actively looking at my everyday life and how medication and lifestyle are affecting me and started problem-solving. I don’t have many answers yet but I have something to start working on. I still hear things my restless brain wants me to do. But I know it’s not me in all my senses (if it makes any sense at all). I know when I’m feeling better, I will thank myself and all the people for helping me hang on to that last thread of possibility that this impairment might get better and probably, I will have more insight into myself and won’t walk away from driving my own life even if I can’t drive a car just yet.
Moral of the story: If you feel constant lack of motivation, seek help! It is probably not in your control to focus.
It took me a bit to talk about this because I had to get to a point where I am able to reflect on it somewhat unbiasedly and talk about it openly. An experience like this doesn’t leave any feeling bleeding human unscathed. Neurological, emotional, and mental trauma contributed to quite a bit of alteration (for the lack of a better word) in my psychological health. I will discuss some in this post but as always, the mind is always changing, and so it is difficult to give a first-person account of everything at any given time. This post is my experience of sickness, and I don’t know if a professional could necessarily validate it.
Also, most of us know these in some sense but realizing it through experience put a lot more emphasis on the nature of life.
The first thing I felt as I came out of anesthesia and pain was a sense of liberation as if I am less attached to myself and realized how fleeting everything about life is. This is a hard feeling to explain because it is more of a perspective towards life rather than a feeling at a time. De-personalization (see Symptoms) helped me realize that my consciousness is separate from everything tangible to medicine. It may come close to the cognitive reserve or meta-cognition, but it is not visible on an fMRI. Coming so close to death and then learning that I am going to live liberated my consciousness from being caught up with the rest of me. This might sound very abstract and even imaginary but being sick is a very spiritual experience. I did have a lot of time to lie in my bed and ponder about the realities of life.
Once I came out of that wise ‘sage-like’ phase, I started having an irrational fear of death. Not that I lost that perspective towards life but survival instincts took over soon enough.
A lot of people tell me that I have been brave to deal with this. But I honestly don’t see it as bravery. We all know that we will die one day or another. We are not scared of death itself. What terrifies us is not having lived a happy and satisfactory life before death takes us. Having to live without a loved one and mourning them for the rest of our lives is petrifying. Old age is not scary because we might die but because we might decay to death. Not that I never had the absolute fear of death, I cried like a baby when I someone (Thank you!) made me realize that I should stop believing that someone somewhere is going to give me a magic pill that will shrink the tumor and it hit me that I could be one of the people who might die of brain tumor or have brain cancer. But I cried and woke up the next morning, and my survival instincts said, “We choose life. Let’s get to work”. One of my favorite quotes of all time is from Game of Thrones:
“There is only one God, and His name is Death. And there is only one thing we say to Death: ‘not today’.”
―Syrio Forel to Arya Stark
One of my friends (I should write a book about him!) said, “There is nothing after you die. So, it won’t matter to you what happens after you die. All the struggle is while you are alive and if you die, everybody who loves you has to live the rest of their lives with that grief”. After that, there was no absolute fear of death. What I was certainly scared of was the decay because I was losing myself slowly. My body was starting to give up on functions one after another, so I was terrified of losing my consciousness in that fight. I have an irrational fear of decay.
Having realized that everything we build in our lives is so uncertain makes me very paranoid about having to experience loss of a loved one. It is so irrational sometimes that my mind just visualizes how something as harmless as a skateboard could cause death. I tell my friends multiple times to drive safely. I had this intense urge to ball up my sister and keep her somewhere safe (almost funny!). Good things happening to me scares me because I wonder if something bad might happen next. I was scared of emotional attachment and letting go because the fear of loss is too hard to overcome to invest yourself. It is ironic that the feeling of liberation towards my own life and fear of losing someone I love co-exist. I am undergoing therapy for this and it is starting to get better.
Loss of self
Everybody I know will attest to the fact that the journey made me a better person (doesn’t reflect too well on my past self… haha!). But along with it, I also lost the person I was for 25 years of my life. I don’t know how much of me is the person I knew. Everything, before I woke from surgery, is blurred and emotionally distant in my head. I did mourn the loss of my past life for a while, but the joy of being alive is much stronger than the gloom of loss.
When I looked at myself in the mirror after surgery, I couldn’t recognize myself. I aged 5 yrs in 6 months. My body and face looked as if they belonged to someone else. De-personalization could have partly contributed to that. But it shook my self-image. To this day, I am unable to let go of that past image. Sometimes, my eyes deceive me when I look at myself in the mirror. But when I look at pictures of myself, I realize that was not how I saw myself (and not just, it’s a fat picture kind of way). There is a different person in the picture whom I still have difficulty associating with.
Decreased sense of time
I noticed that I underestimate how much time has passed. For instance, I do sit idly sometimes staring out the window and not realize that it has been an hour since I have been doing that. I find it hard to estimate the duration of time passed not because I am having a great time with my friends but because my sense of time is somewhat distorted.
Lack of motivation
This could be a neurological effect more so than the result of trauma. Most brain injury survivors I know also say that their motivation levels are deficient compared to before. Not that I lost the passion for what I do, but it is often tough to find the motivation to do anything, even to eat, at times. I see a stronger purpose for me in the larger picture of life, but at a more mental/ hormonal level, it is difficult to have a purpose in those moments. Some say it is the fear of neuro-fatigue and other say it has something to do with the happy hormones. Either way, I have low reserves of motivation, and I try to pile it for the urgent and important things. I have to ration energy and motivation in my daily life.
I never experienced apathy before the brain injury. It is the lack of any feeling. Apathy is indifference to everything. I don’t feel any emotion about anything, not even myself. I only experience apathy when I have severe migraine attacks coupled with PBA. It is cognitively miserable but emotionally blank. I realized that emotions are the key to everything we do only after I saw what it is like to not have them. To feel hunger, thirst, and fatigue purely physically and not emotionally respond to it is a weird experience. Apathy suspends my survival instincts to the point that I don’t eat or drink or walk or do anything. Cognitively, I can look at it and ask myself to get up and eat, but I don’t have the drive. Meta-cognition is sort of looking at this scenario and saying, “Oh, this is what it feels to not have emotions”.
This experience made me realize the importance of living life to the fullest. After 25 yrs when I thought I was going to die, I was not ready. I did not feel like I lived my life at all. It put things in perspective and helped me prioritize things in life. I feel grateful for being alive every day because there are a million things anyone could die of each day but we survive. Almost every day, I ask myself, “If today were my last day, would I still do what I am doing and feel like I have lived a life worth living?”. This drives most of my actions and helps me be a better person.
Sorry about the depressing post. I want to reach out to other brain injury survivors and let them know that it is okay and probably normal to feel this way. But, it is important to seek help because it is easy to get lost in this abyss. Lots of love!
Updated on 23 Dec 2018: 3.5 years after Brain Surgery
This is the current status of my symptoms in the order of relieved– mostly relieved – on-going but may be relieved – may not be relieved.
When I say relieved, I mean the symptoms don’t occur on a daily basis and that the frequency, severity, and duration reduced to a drastic extent but do come up when my body or brain is under a lot of stress. Please note that brain injury causes trauma in the body that might take a while (undefined!) to recover. It is a continual process that requires the person with the brain injury to regulate and be mindful of physical and mental activity. I know logic says that I got fixed and so I should run at the optimal speed but the human body is a very complicated thing to mend.
I was told that it might take anywhere between 3–10 years for my body to feel as if no intrusion took place. For now, it’s still recovering from the shock of my pineal gland going on a sabbatical. Apart from symptoms of the brain tumor, I experience problems from the injury caused by surgery and side effects of medication. At this point, it is very hard to point out the cause of each symptom. I’m very attentive to what my body (my brain tells it obviously!) needs, for example, if it says you can’t walk anymore, I just stop and take a cab back home. I try but find it challenging to be mindful of any new symptoms when I begin a new medication.
It’s very important to listen to your body and learn to differentiate the signals it is giving you. It is very easy to confuse chronic fatigue with laziness, lethargy with a lack of motivation and comprehension problems with lack of focus. These were the initial symptoms I couldn’t understand and didn’t pay attention to. Also, let nobody come between you and your body. Let nobody tell you that you should or should not experience a certain symptom. Your body is unique and statistical significance should not convince you to feel a different way or play a part in your diagnosis.
Inability to process information
I’d go to this cafe beside my house every other day because they had delicious food for every day I got bad news (which was more often than every other day). Their menu is half a page (5-6 pages) and I’d ask them every time I visit what they recommend. It had to get old at some point! I couldn’t read a menu, stack the items in my mind and compare them mentally. I needed help with everything that needed processing information. It would take me forever to decide which tea I wanted to drink from my kitchen (I do have a few more than usual but that’s not the point). Pictures weren’t of much help either. Ayan, my punchbag ;), would say, “Don’t look at the menu. Just tell me what you want.” I’d te like tangy tell him something like fish soup with bamboo in it. If he didn’t find it on the menu, he’d find another restaurant to go to :).
I needed someone to help me cross the road when the pedestrian signal was on. I caught myself standing in the middle of a road with vehicles honking at me at least twice before I realized something was wrong. By the time my mind processed that I could cross the road, the signal changed. On my physician’s recommendation (a gentle, calm and very caring man who doubled as my Psychologist for the first few months), I tried using simple techniques like following other people whenever I could or using the skyways and subways.
Aphasia (Transcortical Sensory)
Aphasia is an impairment of language, affecting the production or comprehension of speech and the ability to read or write.
I couldn’t make conversation without stammering for words especially when I had to talk to one of my colleagues or professors about work. It was as if I forgot all the jargon in my field overnight. I felt very incompetent and unqualified to participate in meetings.
Now, I experience dysphasia due to migraines, side effects of medication, or when I’m very stressed out. The difference is that with aphasia, I didn’t know that there is a word for something or that I know that word. On the other hand, with dysphasia, I know that there is a word for it, and I know that I know it but I can’t remember it just now. I always keep a thesaurus open on my phone to get around dysphasia.
Tinnitus is the perception of noise or ringing in the ears. My ears would start ringing out of nowhere and it took me a long time to realize that the noise was not external. Sometimes, it would be loud to the point that it hurt and I couldn’t hear anything from outside.
Increased heart rate
My heart rate would randomly go up and I’d hear my heart pounding while I am sitting or watching TV. It would take a while (5-15 min) to go back to normal without any help. I usually did not do anything physically intensive. Increased cholesterol levels may have contributed to fatigue and increased heart rate while taking stairs but nothing explained the increased heart rate while lying down.
Loss of temperature sense
You obviously know where I live and how cold it gets here. I had a minimum to no sensation of cold even during winter and I could not tell how cold it got. I could go out in the snow with no footwear without feeling very cold. Some days, my hands and feet would freeze blue but I could not feel it.
By the time I got operated, my eyes were half closed with the drooping eyelids. I think it’s a sign of muscular fatigue but in my eyes, it was another thing I was losing control of.
I’m not sure if my medication caused it but I’d feel severe tingling in my feet and hands. It’s more of an annoyance than pain because there is nothing you can do with tingling hands and legs.
I saw shaky things through a misty cloud for a couple of months and it magically cleared up when I woke up from surgery. I get blurry vision when the intracranial pressure increases from lifting weights or migraines.
For more than 6 months, I could report at least two types of headaches (numbing, pinching, aching, shooting, shocks, pulsating) in two different locations (forehead, temples, top, behind, left-behind, right-behind, top-left, top-right, closer to neck) at any point of time (yes! I could feel even in such deep sleep). I forgot what it is like to not have a headache. A month after the surgery is when my headaches started clearing up and the world suddenly looked so much brighter.
I do experience headaches now and then but they are not so complex and often associated with migraines or strain.
Alexia without Agraphia
Pure alexia, also known as agnosic alexia or alexia without agraphia or pure word blindness, is one form of Alexia which makes up ” peripheral dyslexia” group. Individuals who have pure alexia suffer from severe reading problems while other language-related skills such as naming, oral repetition, auditory comprehension or writing are typically intact.
I could write but not read. I could read out what letters and words there were in the text and even tell what each word meant. But I couldn’t make sense of the words put together. It would take me very long to understand what a paragraph meant and by the time I got to the next paragraph, I’d forget what the previous paragraph meant. A very handsome young neurology resident told me what this condition is called and that I’ve it. He did make it easy to learn by being so cute but living with it in graduate school wasn’t the least bit funny. It was embarrassing and killed my confidence almost instantly because if you aren’t reading, then you’re doing nothing in the life I chose. Now, I only have issues with reading or writing when I have severe migraine attacks.
Sleep paralysis is a feeling of being conscious but unable to move. It occurs when a person passes between stages of wakefulness and sleep. During these transitions, you may be unable to move or speak for a few seconds up to a few minutes.
I used to have it quite often before surgery. Once or twice even while awake. I was taking a shower one day and realized I couldn’t move anymore. I stood in the bath for almost 30 min and there was nobody in the house I could shout for help. I was so scared that I thought I was going into a coma or something bad was going to happen. But after 30-35 min of being scared for my life, I was able to move. I went out of the bathroom and only saw my roommate’s puppy. So I said, “Bailey, please don’t let me die today.”
I called the emergency line and the nurse practitioner thought I could have had a stroke. So I went to the emergency room but they didn’t see any signs of stroke. The ER physician contacted my neurologist and neurosurgeon (not the one who removed the tumor). Both asked the ER physician to discharge me and increase the dosage of Diamox (to reduce intracranial pressure).
Depersonalization-derealization disorder occurs when you persistently or repeatedly have the feeling that you’re observing yourself from outside your body, or you have a sense that things around you aren’t real or both. However, people with this disorder do not lose contact with reality; they realize that things are not as they appear.
As I kept losing control of more and more of my body functions, my consciousness started isolating itself (even from cognition) and looking at my body as a container rather than a wholesome person. It could have also been a coping mechanism to deal with chronic pain and fatigue. It is hard to describe as some of the psychiatric symptoms tend to be philosophical. I don’t know what that feels like anymore but I found this excerpt from my diary entry on 15 Jan 2015:
“I want you to picture this scenario – one of the headlights of your car broke and needs mending. What do you do? Do you stop going to work until you get it repaired? Or do you still keep doing everything as usual and get it repaired when you find the time? I’d assume the latter.
A lot of you have been asking me what it is like to have a tumor. Well, quite similar to the above scenario, only a little different. If you hurt your hand, your brain would know it. But if there is a problem with the brain, I’d know it! The body is very similar to a vehicle – it gives you a physical manifestation, the brain being the control center. The subtle difference is that there is a ‘me’ that the brain belongs to. So, in short, to have a tumor in your brain is like separating your consciousness from the rest of your body and then looking at what it has to offer.”
In addition, I also from constipation and loss of libido which are usually caused by most tumors and excessive medication use.
Irregular Sleep Cycles
I had chronic insomnia for almost five years but all the doctors I saw gave me the usual advice – turn off your devices, go to bed at the same time, try yoga? I’d hardly catch three hours of sleep on a regular day and five hours was a luxury. I envied anyone around me who slept for eight hours. I thought I was superhuman because I don’t need so many hours of sleep and I could function perfectly well when everybody else complained about how they got only five hours of sleep the previous night. If I got five hours of sleep, the world would be greener and the people I met would look happier miraculously 😀 All the advice in the world didn’t do anything to my sleep routine.
From mid-September’14 and I suddenly started experiencing somnolence, sleeping irregularly and continued just sleeping for the next six months. I’d sleep for more than 15 hrs a day and wake up sleepy and fatigued. There were days when I slept for more than 20 hrs, woke up only to eat what’s on the kitchen counter and went back to sleep. Most days, I’d have no idea which day it was because I would have been sleeping. The only times, I kept myself awake was when I had to go meet doctors because I had to do something to entertain myself apart from sleeping. It was as if I was sleeping for all the five years and I got such deep sleep I never even had dreams. I used to feel extremely drowsy even during the few waking hours I had.
I try to get 7.5 – 9 hrs of sleep every night and take a 30-45 min nap in the afternoon. Because I’m still recovering, I don’t mind getting some extra sleep if my body needs it. Sometimes (not always), sleep is the only thing that makes me feel better. Migraines still throw me off balance and make me switch between hypersomnia and acute insomnia. Insomnia causes very bad headaches, irritability, and nausea all day. Now, I cannot function if I didn’t get enough sleep the night before. You’d think hypersomnia would make me feel recharged but it makes me feel fatigued, drowsy, and gloomy.
So please take it from someone who has been on the extreme ends of the spectrum – get enough sleep, there is nothing in the world that can’t wait until tomorrow. Sleep regulates most of the cycles in your body. So if you don’t or can’t get enough sleep, get help immediately!
Issues with memory
It is interesting how you can differentiate the different functions of your brain when they are impaired. I could actually understand that I had difficulties with processing information, storing information, retaining information, and recalling information. Even when I could process information with some difficulty, I could not memorize it very well. Remembering and recalling placement of objects, paying bills, appointments, and other details (both minor and major) of my everyday life was very hard. I think being pre-occupied with the notion of getting well helped me get through everyday life but my neuro-psychologist saw it as an impediment to me feeling fine (well, I wasn’t fine and I was not going to let the inadequacy of modern medicine dictate how I feel).
One of the first symptoms I noticed is how impaired my working memory got. I could not remember simple things such as parts of sentences or a 4-6 digit code to copy. This is still an issue in my daily life that keeps popping every now and then. It presents the worst when I try to multitask and push my cognitive abilities. I almost immediately get fatigued and my brain goes into this foggy sleepy mode triggering hypersomnia or a migraine (depending on how well I was doing the previous days).
If I just as much used my hands, they would start hurting. By using I mean, showering, picking up a purse or eating. My physical exercise consisted of getting up from my bed and walking to the car (I lived in an apartment downtown!). Sitting in the car on the way to the hospital about 5 min away while someone else drove it would drain me out for the rest of the day. It was as if I was exhausted by existing.
If my pre-surgery fatigue was at a 10/10, my fatigue levels right now are at about 1/10. I do get a lot of things done now compared to a few months ago but I still have to go from 6/10 to maybe 10/10 on the energy scale. I do see improvements every few months. Yet, it takes a lot of patience to not be frustrated and disappointed with myself on a day to day basis because my life acquires new normalcy every few months and is often different from the previous and vastly different from the one I had before my symptoms started. Regular and controlled exercise helps with improving energy levels gradually but migraines regularly interrupt that and set back my progress.
Mental fatigue comes in thinking processes, learning and information processing, watching television extensively, doing computer activities, but also solving problems, interpreting the behavior of other people and thinking logically.
Critical thinking can exhaust anyone but sometimes thinking about simple things such as what to wear or eat is exhausting. With brain injury, mental fatigue caused by decision making or critical thinking can be experienced as physical fatigue. I can feel my body physically shutting down after a few hours of writing or brainstorming. It is often like hitting a wall. With physical fatigue, I could push it a bit more and rest. But with neuro-fatigue, when I hit the limit, my body shuts down physically, mentally, and emotionally. I have to call it a day and get a lot of sleep to recharge. My body needs a lot more sleep than before and I don’t feel recharged until my brain had time to recover from sleep. I have to plan my week with a day of rest in between to make sure I don’t crash.
Moving traffic, doorways, patterns on floors or walls, strobes, too much text or information make me feel very dizzy and nauseous. Now, I can handle most of them better quantitatively with the exception of strobes.
Pseudobulbar Affect, PBA
Pseudobulbar affect (PBA), emotional lability, labile affect, or emotional incontinence refers to a neurologic disorder characterized by involuntary crying or uncontrollable episodes of crying and/or laughing, or other emotional displays. PBA occurs secondary to a neurologic disease or brain injury. Patients may find themselves crying uncontrollably at something that is only moderately sad, being unable to stop themselves for several minutes. Episodes may also be mood-incongruent: a patient might laugh uncontrollably when angry or frustrated, for example. (Source: https://en.wikipedia.org/wiki/Pseudobulbar_affect)
Often times, PBA is confused with depression/anxiety and it goes undiagnosed. I recognized it with a simple test – Do you feel the same way inside and out? In a case of depression, you will. With PBA, you often don’t. I’d lie in my bed for hours just staring at the roof without any motivation to get up and do anything, not even eat when I know I’ve been starving. I’d wonder what’s wrong with my motivation and watch TED talks to pick me up. This happened for a couple of months before the headaches or fogginess showed up. It made me question all my life’s decisions (not that I made many by that time :P) although I knew I had a perfect life. It created a constant indifference to everything – to people, to myself, to life in general and even to death. I felt a state of mind in which sometimes, I would experience neither positive nor negative emotions and the other times, I’d pour my heart out into my diary and cry for hours. A little after surgery, I’d laugh uncontrollably for no reason at all and be embarrassed for doing that.
God bless the people who dealt with my PBA + PMS. You wouldn’t have met a more irrational person in your life! I’m indebted to the victims of my PBA + PMS eternally and love them more than ever.
After surgery, the PBA episodes get triggered when I have migraines from pressure/ temperature changes, I exhaust myself physically or mentally, stress, lack of sleep, or a combination of these factors building up. I experience apathy and amotivation for days and random crying episodes intermittently. Though the reasoning in my head says, “Wake up – show up – eat – drink else you will get dehydrated and fall sick – get to work…”, I will have no motivation to do anything. It is a miserable experience to fight this conflict. I feel very embarrassed to go out from the fear of bursting into a crying episode. The crying episodes last between 15- 45 min and the apathy last from a few hours to days. A severe episode of PBA leaves me exhausted as if every last ounce of energy has been drained out of my body and lasts for a full week.
Loss of taste sensitivity
Most foods tasted the same except Nutella (of course! :D). Sweet was pretty much the only taste I could decipher. Everything else tasted like nothing.
I kept complaining to my friends about how I couldn’t think straight. It was like I couldn’t push my thinking beyond a point because my head was in the clouds. This is as accurate as it gets because it’s a very hazy feeling to explain. It was as if I never really woke up completely for more than 6 months. I couldn’t tell reality apart, for example, if you convinced me enough that a certain thing which actually happened, in reality, didn’t happen, I’d believe you because my perception of reality was so limited. My life in that very moment felt surreal and I could never be sure what yesterday looked like. Now, I usually have brain fog in combination with migraines or PBA.
I also experience brain fog in two ways – (1) when I feel numb and my brain can’t think (2) there is hyperactivity in my brain and my brain feels like pulp. Although both lead to challenges with critical thinking, the experience is very different.
I don’t know if it was my body compensating for the lack of serotonin(one of the four happy hormones) but I used to physically crave for anything sweet. The pineal gland is responsible for secretion of melatonin, a serotonin derived hormone which is responsible for regulating sleep cycles. I’m not sure how but my pineal gland got confused and secreted a lot of melatonin putting me to sleep all the time. I think I was low on serotonin which in addition to not making me happy, gave me insatiable sweet cravings. God bless the chap who invented Nutella. I’ve no clue how many jars I finished.
My hunger cycles were very confusing! For a few weeks, I wouldn’t be hungry at all. The thought of food would make me feel nauseated. A few weeks following that would be days of constant hunger pangs. I’d be hungry even while I’m eating and nothing would satiate my hunger, not even a litre of water. I’d be hungry through day and night and eat everything in my sight.
For more than three months before surgery, I woke up with limp hands and legs that didn’t work until I stayed in bed for a couple of hours (on good days!). If I got up straight away, my legs would buckle on standing or not walk. It was really funny when I said, “My legs aren’t walking yet”. It’s difficult to understand how that works and I did get asked, “How can your legs not walk?”. But they didn’t! It was similar to my hands as they couldn’t grip objects unless I paid attention to not let go. My legs would work at some point in the day but I mostly lost control of my hands. I couldn’t hold pens or brushes or open water bottles for a long time. Sometimes, I had to hold one hand with the other to make it sign (which was the only writing I’d do) but that wouldn’t work for more than 5-10 min. All the table manners I was taught all my life weren’t of much use when I couldn’t hold a knife and fork the right way. On most days, I’d wake up saying, “My hands and legs are not working again today”. Please tell me I’m not the only person who finds it funny. Now, I only experience this when I have severe episodes of migraine.
I am able to hold a pen and write a page or two on good days. But my handwriting changed due to the loss of dexterity. I can’t write long strokes or cursive smoothly anymore. I still cannot hold a thin paintbrush and draw straight lines or paint on a small area. On other days (randomly sometimes), I cannot hold a pen and write a paragraph. My hand hurts severely (as if the nerves are pulling back and muscles are cramping) when I try to force it to write before giving up completely.
I didn’t know for more than two years that I also had psychomotor impairment in my left hand. Because I’m right dominant, I only noticed that I can’t do things with my right hand as well as I used to. It was only when I got a neuropsychological assessment that I found out that my left hand is more impaired than the right. The neuropsychologist was surprised how someone couldn’t notice this level of impairment.
Challenges with balance
Three months after surgery, I got tested for balance and found out that the left side is worse than right. I’ve been working on exercises for improving balance. I didn’t get an assessment but I think balance on my right side is back to normal.
“I did type by a ‘p’ this time. Why does it show an ‘i’?”
“I’m very sure I moved it sideways. Why did it move downwards?”
My fingers weren’t quite listening to me. I also noticed it when playing games on my phone because they move sideways onstead of down. It took me very long to type because it required conscious control of my hands and looking at every key and sometimes, using one hand to make the other hand type. Now, I only present this symptom when I have a migraine, try to push my cognitive abilities, multitask, or try to do things quickly rather than at a steady pace (ex., when I try to type quickly at my pre-injury, my fingers start misfiring and soon, my hands become limp).
I’ve episodes of severe, shooting or jabbing pain that feel like an electric shock in my ears. Each episode might last a few minutes and episodes occur close together. Then, I’d go without any episodes for a few months. At first, I thought it was just the nerves regnerating in my ears because I had the same experience with facial nerve regeneration a few months after surgery. But these happen only in my ears and haven’t stopped in two years. Right now, I’m not seeking any treatment for it because it is not so bad that I spent time and effort on pursuing it.
I couldn’t see any bright lights be it natural or artificial. Neon lights cause headaches, dizziness, and nausea and I couldn’t attend classes or meetings due to that. I used to sit in dark rooms for days because I couldn’t go out to see even daylight. I could not wear any glasses because the weight of the frames caused a lot of pressure to build up.
After surgery, I use indoor and outdoor migraine glasses to cut out artificial and natural light (https://www.theraspecs.com/). I don’t need to constantly wear them now but I always carry both the pairs. I can even watch 2-D movies on standard screens now (no 3-D or IMAX).
Any sounds used to cause extreme headaches and confusion, even conversations. I couldn’t use a phone to my ear. I could only take calls on the loudspeaker with least volume level. Any music or TV or sometimes even people talking loudly or quickly caused a lot of dizziness and annoyance. I couldn’t walk on a street or stay in any public spaces like restaurants for long. People talking inside a car was very difficult to tolerate. Going to a party or a movie was out of the question.
I got much better with the noise sensitivity – I can now sit through a movie and even a party without loud music for a couple of hours. But I always carry earbuds in case I need to block out some noise and prevent over-stimulation.
Nausea and headaches worsened each other. I had constant nausea for almost six months. After my initial diagnosis, I was on constant medication to reduce nausea so it wouldn’t lead to vomiting, dehydration or worsening headaches. I took medication for nausea after each meal. Any change in pressure, temperature, motion, altitude, or medication worsened nausea.
Now, I have nausea from migraines and medication which occasionally leads to vomiting. But I am not on medication anymore.
Problems with Comprehension
It first started with the inability to read (see pure alexia) and then progressed to me not being able to understand normal conversations. Irrespective of language, I couldn’t comprehend language, sounds, visual signals, or even touch effectively. Sometimes, there was a delay in comprehension, other times, just dizziness and brain fog. I couldn’t attend meetings or classes and make sense of what people said. I couldn’t be a part of conversations that had more than one person (other than me). I could only understand if the other person spoke at a lowered pace and voice. I had to record all my doctors’ appointments and listen to them later to make sense of them. I couldn’t understand or learn new information well.
I still have problems with comprehension when I’m stressed or exhausted. It usually presents as brain fog first.
Although everybody experiences head rush from getting up or bending down too quickly, I have to more careful to make sure the head rush doesn’t increase too much pressure in my brain and lead to headaches or brain fog.
The injury caused by the tumor and surgery resulted in extreme weight gain, vitamin deficiencies, and hormonal imbalances (testosterone, estrogen, serotonin). I gained 30 lbs in a year through diagnosis and few months after surgery. Due to the fatigue and amotivation, I could not focus on getting enough exercise for a long time.
I am now trying to improve my metabolism and reduce inflammation in my body through healthy food and exercise. I had to take a very high dosage of supplements for vitamin D (60,000 IU) for a few months. But apart from that, I am just being patient with my body to return to its original state.
Any change in medications or living conditions causes my body to retain water and plump up like a balloon. It also goes down by itself as my body gets used to the new conditions but it is bothersome when traveling (when my clothes or finger rings don’t fit) or people around me say I gained more weight (shakes my self-confidence). I had to take medication only once so far on a month long trip.
This is one of the visual symptoms. Although invisible illnesses are hard to live with (some people do say things like, “You look fine to me”), visible symptoms are equally annoying because it is hard for others to empathize with your struggle underneath. I’m fortunate to have as much support as I do from friends, family, and workplace. It is still hard for them to empathize with something that is unfathomable.
Swelling of neck
Whenever I experience stress or strain, the intracranial pressure increases causing my neck to swell up. It causes increased headaches and a feeling of heaviness in my head as if a huge rock is sitting on top of my neck. I don’t have a diagnosis of IIH (Idiopathic intracranial hypertension) but mild symptoms related to it are common after craniotomy. It also triggers some of my cognitive symptoms such as comprehension problems.
Restless Leg Syndrome (RLS)
Restless legs syndrome (RLS), also called Willis-Ekbom Disease, causes unpleasant or uncomfortable sensations in the legs and an irresistible urge to move them. Moving the legs or walking typically relieves the discomfort but the sensations often recur once the movement stops. Symptoms commonly occur in the late afternoon or evening hours, and are often most severe at night when a person is resting, such as sitting or lying in bed. Since symptoms can increase in severity during the night, it could become difficult to fall asleep or return to sleep after waking up. RLS is classified as a sleep disorder since the symptoms are triggered by resting and attempting to sleep, and as a movement disorder since people are forced to move their legs in order to relieve symptoms. It is, however, best characterized as a neurological sensory disorder with symptoms that are produced from within the brain itself. (Source: https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Restless-Legs-Syndrome-Fact-Sheet)
I had severe RLS in my insomnia days which in turn made it worse. Now, I experience it when I’m sleep deprived, exhausted (physically, mentally, or emotionally), or don’t get enough exercise. Migraines, limp limbs, and RLS play against each other and I dread having to deal with them at the same time. The only thing that helps (sometimes) is a heat pack on my legs.
Migraines are the most debilitating result of brain injury and they are triggered by any or combination of a number of triggers:
Sudden temperature change
Barometric pressure change
Extreme weather (heat is worse than cold)
Sleep deprivation & jet lag
Overstimulation (any sensory)
Low/ high humidity (than average)
TV/computer (bright or loud)
Last call duration/ excessive phone usage
Ice water / cold drink
Visual clutter / running patterns
Sleeping flat (I get away with just 15 degrees elevation on good days)
Increase in blood circulation to brain (from bending or activity)
Caffeine (this has been getting better)
Excessive mental activity
Menstruation (the cramps and migraines compete!)
Spicy food (and I grew up in India!)
Bright sun coupled with exhaustion/ sleep deprivation/ jet lag (got much better with daylight though)
Often, they cause brain fog, comprehension problems, limp limbs, irregular sleep cycles, PBA, nausea and vomiting, and drowsiness. My scalp also becomes very sensitive and tender and hurts when I touch my hair. In spite of keeping it short, my head and hair feel very heavy during migraines.
With chronic conditions like migraines, life feels like just surviving every day rather than living without fear. My daily life is severely limited by migraines because so I couldn’t find any medication that worked so far. Thunderstorms are my worst fear as they incapacitate me for days.
I started taking a daily prophylactic for migraine after trying to deal with it naturally for almost a year and a half. Although it is effective in reducing the intensity, the medication cannot help much without changes to lifestyle. So far, the things that helped me reduce the number and intensity of migraine attacks are:
keeping a routine (my body craves for homeostasis) and balancing the amount of activity each day (I have learnt to say no to things that might create stress or require a lot of physical or mental activity. Although being in graduate school is like punching my brain with no routine and critical thinking day-in and day-out, I try to balance it out with days of easy and hard tasks)
working out every day (I mostly do 20-30 min beginner workouts without putting much pressure on my neck or head avoiding a head rush at all time)
hydrating through the day
staying in a temperature, pressure, and noise controlled environment (reduce sensory overload as much as possible. This is the hardest and sometimes, impossible to do)
eating fresh vegetables and fruits
sleeping 7-9 hrs every night and taking a nap in the afternoon as needed (listening to my body when it needs more sleep helps me from getting a migraine attack before I recuperated from the previous one)
reduce sugar and salt intake (I don’t buy lunch meats or ice cream anymore)
avoiding caffeine after 4 PM and sweets after 6 PM (I stopped drinking coffee after surgery. I only have green tea or matcha before a workout and limit it to 1 cup a day.)
reducing icy drinks or foods (I always ask for hot water at restaurants. Ice water gives me an instant headache on most days.)
reducing stress as much as possible (This has been almost impossible as it is easy to get overwhelmed from overstimulation or being unable to function at a normal pace due to the impairments. I meditate every day to reduce stress but it still remains the worst trigger of all.)
Loss of Hearing
Due to the noise sensitivity, I didn’t know I was losing hearing in my right ear. This was one of the early symptoms as I found out (incidentally!) that there was a slight difference between my left and rights ears a year and a half before my diagnosis. But the physician just said this may be due to using phone or headphones for long periods of time. At that time, he only diagnosed decreased sensitivity in hearing in my right ear. I did follow his advice but the hearing in my right ear only worsened till surgery. The actual hearing loss was again, an incidental finding during one of my neuro ENT visits.
There is a drastic difference in hearing between my ears but I couldn’t tell the difference until the sensitivity got better several months after surgery. I don’t wear a hearing aid but I can tell the difference in hearing. My surgeon said it might get better as the nerves regenerate. I got it checked two years post-surgery (May 2017) and I still have mild to moderate conductive hearing loss in my right ear which I’ve been told will not reverse.
Retrograde amnesia is a loss of memory-access to events that occurred or information that was learned, before an injury or the onset of a disease. “This is the kind of amnesia that is most often dredged up as a plot element in bad comedies and cheap mystery stories; so-and-so gets hit on the head and then can’t remember who he is anymore, wanders around aimlessly, finding himself in zany predicaments, until he gets hit on the head again and his memory remarkably returns. This almost never occurs in real life. Although retrograde amnesia is real, it’s usually the result of a tumor, stroke, or other organic brain trauma. It isn’t restored by a knock on the head. Because they can still form new memories, patients with retrograde amnesia are acutely aware that they have a cognitive deficit, are painfully knowledgeable about what they are losing.”
I lost memories of the visuals of most of life before surgery which caused derealization. I know the story of my life broadly but it is as if there is a distance between me and my life before surgery. I do regain some of them randomly or when I re-visit some places. I did forget a few people’s faces and a lot of places (my college :O). There are things (ex. music) I like but not sure why or from when. Because I lost most of the visuals, I don’t feel very emotional about incidents in my past. I have difficulty feeling emotionally connected to people I knew in the past. It causes a lot of emotional conflicts constantly interfering with re-inventing identity after injury. I mostly have emotional memory loss but some episodic memory loss too. I lost a lot of happy memories but then, I am not hurting from any of the sad memories either. One of my friends who also suffered from amnesia said, “You have a life now and plenty of time to make new memories. Don’t worry about what is gone. You can be the person you want to be rather than the one you were.” The curiosity to piece my life together from snippets I hear from people never dies. But then, human memory is faulty. I hear different versions of the same story from different people. Other times, I have a gut feeling that the story is not quite right but I don’t know what the actual story is. Listening to someone talking about past incidents I don’t remember gives me a bad headache instantly.
I have a prominent surgical scar and a dent in the back of my head. It is not visible from the hair but it took a long time to heal. I keep my hair short so that the hair doesn’t pull the skin around my scar and make it sore. Although it healed and the scar formed, it doesn’t take much for the scalp around to get sore and sensitive to touch.
Note: This is a living breathing document. It will change!
Life without the partner
She was on a date with her life – dressing up, writing, cooking, reading… they did everything together. It almost looked like a perfect couple with little tiffs like deadlines and charred meat to spice it up. A tear or two always came to her rescue when she gossiped to the diary. Her art was living and breathing. She took pride in taming the most beastly thing she knew – her desire!
She never met him, never even glanced! His glimpses always escaped her attention. He started to take over on the sly. Fall began and so did his work on her. Before his entry, she was a sculptor and the sculpture. She was on a holiday with her friends when he started creeping into her.
“I’ll be done with that assignment in 20 min.”
“But this is difficult and I’ve been on it for 2 hrs.”
“I’m going to be off in half an hour. Don’t waste so much time on it”
But she didn’t finish it in more than two hours. “I must be preoccupied or sleep-deprived or just tired! Maybe the assignment is actually difficult.”
The holiday ended in what she thought was sleep deprivation and exertion. But it ended in two weeks of just sleeping. Then came the headaches. Slips and misses at work followed. It took a while but it finally dawned upon her – she couldn’t understand what she read anymore!
There were doctors. First, a couple of them and then more. Then, what she thought was the revelation. He presented himself – they called him a cyst. But this was just the beginning.
“But I’m the first born. I have so much immunity that I never fall sick.”
“Infection? Tumor? Hemorrhage? All of them sound bad!”
“Could you fix me right now because I’ve work tomorrow?”
The fear didn’t sink in yet. Her will was undeterred because it was hardly put to test. Her energy levels were sinking and fatigue started crippling her days. But her drive to get this sorted was so unrealistic that anything could hardly happen!
Months and weeks slipped through her fingers. There weren’t any diagnostic procedures left to run on her. Consultations followed procedures but nobody said anything useful. It was like white noise passed from the doctor to the patient to the support system. Now, they called it a tumor and that’s all 21st century medicine could do in three months. she cooked and ate sometimes. The rest of the days, she spent in bed. The tumor wouldn’t tolerate any attempt to read or walk. She would be severely punished for that with better headaches and body pains.
The tumor grew. Her symptoms worsened. But the men of science found no correlation between her suffering and the images. She thought they would take her problems and own them. But they don’t and they didn’t. There was frustration and anger. Most of all, there was self-doubt. When sanity is in question, the best of us lose ourselves to the answer.
“Could you please put an end to it one way or the other?”. She ‘d rather die fighting for a life she could live rather than barely survive
Then came her knight in shining armor and it all happened like a fairy tale. Everything happened so quick there was hardly any time to think. She lived!
Mycroft Holmes: “In the end, are you really so obvious? Because this was textbook: The promise of love, the pain of loss, the joy of redemption”… There is a reason it’s textbook. Because it always works! It’s always said in retrospect but every moment was worth it. She thought she knew happiness and now came bliss. Then she walked into the sunset with all the hands that held her for now and for life.