First of all, I want to make it VERY clear that recovery is not something that can be rushed. Every time I try to push myself to do more, to get better faster, I experience the opposite of what I want – I have a delay in recovery and an increase in symptoms which result in hours or days of frustration, forced rest, etc. Now, after months of self-flagellation after a significant relapse, I know that I have to accept these experiences, learn from them, and love myself through the relapses.

Self-compassion is everything in this journey.

With all that being said, I am going to present some non-medical actions I took that have helped me the most:

1. Create or join a community of people who understand what persistent post-concussion syndrome (PPCS/PCS), a form of traumatic brain injury (TBI), is. It is important that this community is a safe place, and also a place of hope with people who are actively recovering. Sometimes it is difficult to find a community of people with PPCS. If you have people supporting you, at least some education about the condition is very helpful for everyone in your support network.

Without support it’s too easy to fall into the trap of “what am I doing wrong?” or “I should be doing more” or “if the doctors tell me I’m fine, maybe I’m really crazy,” etc. A support network, and especially people who have been through this path and have managed to return to a fulfilling life, is fundamental to trusting yourself, and only with that trust can we undertake such an unknown and confusing journey as post-TBI life and recovery.

In my case, I spoke with a wonderful physically disabled person who gave me this advice. Luckily I found The Concussion Community (in English) and LoveYourBrain (in English). I haven’t seen resources like that in Spanish and that’s why I’m writing this blog!

Tip: Always bring someone you trust with you to medical appointments, if you can. If you can’t, write everything down or record it.

2. When I have good and understanding guides/doctors, I learned to tell them the full truth. At first I hid some shameful aspects of the condition. I didn’t mind talking about how I felt physically – vertigo, visual disorientation, dizziness, feeling like I was drunk, hearing problems, urinary difficulties, etc. But the emotional part scared me. I knew I would cry if I talked about it, and I was tired of crying over losses – many plans, some friends, and even my personality, but…

What I didn’t expect was that it would be so hard for me to control my thoughts. Many of my worst fears slowly began to re-emerge inside me, creations that I thought I had already overcome. But there they were, dancing gleefully in front of me, and growing. Since many of these fears had a spiritual nature, I went to mass more again, spoke to a priest, etc. In fact, it was the priest who told me that he thought it might have been something more psychiatric (he is a very intelligent and wise person). This was the beginning of understanding my new fears as something physical and not a lack of determination or beliefs. Another doctor, a few months later, told me the same thing – that this was a physiological manifestation of the brain injury, and he started looking for a way to heal the part of my brain responsible for my inner struggles. Little by little, those fears went away and/or I faced them, and I now have a much more balanced interior, and perhaps even more balanced than before, thanks to my doctors and to my EMDR-trained psychologist.

I now have a lot of faith in the ability of medicine to help us with “mental health problems.” I am very grateful to all of my doctors, and to myself for having had the courage to speak up.

3. I have had to accept the situation as it is and that includes grieving. And I have grown through this process. Grieving is not something I expected to have to go through after the accident. I thought that in time I would just become my old self. However, life has taught me that I might not go back to the old self. Or maybe I would get back to 97% of it. 97% has been the goal. Because of the accident, I missed out on two very good professional opportunities. But more importantly, I was losing myself. The physical individual world I lived in was that of a hollow person. My body existed, the senses technically worked, but the personality, the creativity, the sense of humor, the capacity for empathy, the quick intelligence, the ability to converse… I couldn’t find any of this. Hollow.

I cried many times when I realized that perhaps this new person was the one I was going to be forever. I lamented that my brain – the organ that had “paid” for my university studies, that had learned Spanish, that had helped me get through many difficult times and that my husband had fallen in love with – was no longer around. And who was I then?

A person with new lessons to learn:

• Patience
• Respecting and honoring emotions
• Listening to the body
• Empathy through experience
• Self-compassion
• The power of breathing
• There are people who love me even though I am of no use
• Many older people listen very well and are very compassionate
• My body knows the difference between people who are safe and those who are not
• It nourishes me to be creative
• People who want to understand understand, those who don’t, don’t
• Self-esteem may be innate, it doesn’t have to be proven

I don’t know what percentage of ‘me’ I am now, but I have a different peace…at least most days.

4. Learning to fill the days when I ‘couldn’t do anything’ was a challenge that required creativity! This is because the list of activities I couldn’t do was quite long. To change perspective, I made a list of activities that I was able to do:

• coloring pictures
• drawing
• painting (I found that I like watercolors)
• origami
• walking outside, especially where there is more nature/less noise (with sunglasses and a hat!)
• doing crossword puzzles
• writing – poetry, short stories, journaling, etc.
• playing piano or guitar
• gardening
• meditation/mindfulness
• finding easy games on my phone
• cuddling with my dog
• reading, depending on my mental/emotional capacity
• cooking (I couldn’t at first but now I can)
• listening to audiobooks and/or podcasts (if you don’t have phonophobia/hyperacusis)

5. I learned to eat well to keep symptoms as low as possible. Despite having been on the verge of being vegetarian, I had to go back to eating meat, and good quality meat. In general, I didn’t like eating at first because I always had an emotional low after eating. I did eat fresh vegetables, though – broccoli and carrots in particular. I gave up lactose, gluten, sugar, caffeine and alcohol.

I’m slowly getting back into some of the foods I’d been forbidden to eat. I think I’ll have to give up lactose altogether.

UPDATE as of the beginning of January, 2025: I still avoid alcohol and too much lactose, but I am back eating everything else. Sugar will always be limited, but there are days when my energy levels drop suddenly and I really need it!