I want you to imagine someone who deeply loves you; how they make you feel when they smile at you and what it felt like to be around them. What if life changed in an instant, and they never looked at you the same way again?
My heart would shatter because in my mind I knew there was a chance they might be right; this might be the last time they hugged me. Even if I lived through the hospital stays and tests and “seizures” no doctor could diagnose, what if I forgot so many memories we shared that they couldn’t relate to me anymore?
When my TBI occurred it slowly began to bury every relationship I had. I have had a couple traumatic experiences in my life, and like a cat cashing in his lives, I have always bounced back. But with this brain injury I was not landing on my feet. That strong, confident, feisty woman turned into a helpless little girl who couldn’t even take a bath without supervision, or recognize family members. How do you relate to someone who has changed so drastically overnight?
Each brain injury is unique. Everyone can experience different symptoms, treatments and recovery times. However, there is one part of brain injury that is universal: the evolution of relationships. When the accident first occurs everyone tends to rally around you and cheer for a speedy recovery. When a limb is broken it heals, you rehabilitate, and life tends to move on. When there is damage to the brain or spine, the word speedy doesn’t come up during your recovery.
I remember being in the ICU when the symptoms of my TBI peaked in 2013. I earned myself a bright yellow “fall risk” bracelet, and my head was wrapped in gauze. I would wake up and have no idea who I was, or where I was. I wasn’t able to move the left side of my body and my head felt like it had been manhandled by a gorilla. My vision would be almost non-existent, and if I was really lucky I what I could see would be in doubles.
I would look around the room, not able to recognize my loved ones, a tear would roll out of my left eye and I would say, “Is my brain broken?” I would see everyone around me, dumbfounded on how to answer that question. My mouth would be so dry I could barely move my tongue to talk. “Was I in a car wreck?” I would utter out next. “No, honey, you weren’t in a wreck,” someone would usually confirm. I didn’t understand how I got there, or why I was in the condition I was in, although, they didn’t either.
I was sent home after five days in the ICU with no tools or explanation of what was happening. I would sleep for 14 or more hours a day. I was so weak and fatigued that I couldn’t sit for too long and my head would droop over as if a weight was tied to my neck. Sometimes my eyes looked like a zombie, just soulless. I couldn’t handle too much noise or light. If I reached my capacity with stimulation I would turn into an irritable T-rex that was seeking vengeance on anything that crossed my path.
I remember one day when my best friend sent me a text and asked if I wanted to hang out. I was overstimulated already when my phone began to buzz. He hadn’t heard the news about my condition yet, and unfortunately he found out through a text message sent straight from the wrath of my brain injury. I went off on the poor guy without realizing or remembering what I had done. He showed up to my house about a week later with a Disney puzzle in hand, and sulking sadness and confusion. I tried to explain what I could, as best as I could, and I saw his eyes tear up. He knew to some degree he lost his best friend Nikki, and she may never come back.
After I learned how I treated him on that text, I was immediately filled with regret, shame, and embarrassment. How could I be so cruel to some who cares about me so much? When he left I remember longing for the day we could go hang out again. I was also terrified — what if I said something worse to him, or said something I would never be able to take back?
I began slowly isolating myself from everyone so I wouldn’t be hateful to them, because I knew I wasn’t in a state to control it. I was also too embarrassed to be around them. Some days my speech was slurred and I would mix up my words. I can’t tell you how many times I called my dog a fridge, instead of Nyah. I felt worthless, like I was a burden to my friends and family. I saw the look on my friends and families faces that they would wear at my funeral. I didn’t have the emotional strength to keep facing that.
Significant time had passed and I was still working harder than ever to slowly get my life back. I had family members who would be critical of me because I hadn’t readapted into what they considered a normal life. “When are you going to get a job?” they would ask. Or my all-time favorite, “Is she just lazy?” I would get deeply offended. At the time I was going to 15 appointments a week to try to get to a stage where I could have some sort of quality of life. It took hours and hours of work just to come as far as I had and yet it still wasn’t good enough for them. They talked to me like a failure and a disappointment because I wasn’t healing at the rate they expected. It was ironic to me that all these people had opinions of how far along I should be, or what I should be doing, and yet not one of them had suffered from a brain injury. How could they project such a high standard at me, when clearly they had no education or experience that could relate to my circumstances? Why couldn’t they accept how I had become beautifully broken?
I knew that loss of relationships was a common after-effect of TBI but I was curious as to how common. I know of at least 37 survivors that have lost friends, family, and spouses as a result of their TBI. People who have vowed to be by your side, for better or worse, disappeared when the situation became “worse.”
Brain injury survivors once were nurses, mechanics, doctors, business owners. A brain injury can happen to anyone. Whether you are on your way home and God forbid get in a car wreck, slip on the ice, or collide while shooting some hoops. What would you do if everyone you loved started trickling away from you? Nothing hurts more than losing relationships with family, friends, and everyday life. While your lives have moved on and you pulled away I was still learning how to get dressed by myself.
If you want to support a loved one who has TBI, drop the expectation of what they are supposed to be. First off, unless you have been there, or have some sort of doctorate in the field, you are not qualified to tell me “how I should be progressing” in order to have you in my life. I have come to peace with my condition. I love every part of myself, even if that’s not good enough for you. I wouldn’t apologize for accidentally breaking my arm and I won’t apologize for accidentally breaking my brain. I am “beautifully broken” and I am proud of how far I have come, even if you don’t understand my journey.
If you ever do find yourself in a predicament like I was in, I hope you are treated with love and respect. That you aren’t abandoned by society because you don’t meet their expectations. I hope friends come by your side, and have patience with you even though you have failed to do so with them. If you find yourself in a situation similar to mine with no one around, know that you can reach out to me. I will be your friend and help you, even if you didn’t treat me with the same respect. Survivors are people that matter, and deserve to be treated as such.
Five Ways I am Different After My Traumatic Brain Injury
1. After my TBI I used to repeat myself often, and here and there I still do. I was OK with people calling me out for it, because it pointed out my much-needed growth. If someone was cold, or made fun of me it would make me feel mad and frustrated with myself. Sometimes it could put me in cycle where I would feel worthless.
I know it can be irritating to hear the same broken record, but it was sad to me that I was that record and couldn’t remember it. I may not have remembered telling the person, but I do remember some people’s reactions and it hurt. Saying things like “That’s right, you had mentioned something about that earlier, thanks for reminding me,” was really helpful. I know there were many times when my mom would pretend it was the first time she had heard something, even if I had already told her 10 times that day. I can’t tell you how grateful I am for her support. She was always kind, gentle, and encouraging; it has allowed me to mostly heal my injury.
2. When my brain would be overstimulated or something wasn’t functioning properly, I would turn into an angry wildebeest. My tongue would lash harsh phrases at people and I wouldn’t have a recollection of everything that I said or did. The brain goes into fight or flight (survival mode). It does what it can to survive.
By yelling and going off on everyone two things tend to happen. The brain produces different hormones and begins to change the chemistry of the brain, and a lot of times people would back away from me which brought down the level of stimulation. Arguing with me would only make the situation worse since my brain would go deeper into survival mode. Even if I was really hateful, I was fortunate enough that my parents understood. Them leaving the room and not arguing was extremely helpful, even if I was arguing something ludicrous like the San Francisco Bay Bridge was in the UK. I would also find a sanctuary in my laundry room. I was so hot (mostly because I was pregnant) and I would lay on the floor in the dark to let everything calm down.
3. Before my TBI I used to travel all the time. It has been a hard thing to not be able to just get on a plane and go. My brain is not able to adjust to altitude or barometric changes. When experiencing these drastic changes my head feels like it’s in a microwave and any minute it’s going to explode like overcooked leftovers. The pain is astronomical and I have cried when it’s too intense. I get extremely nauseous and irritable. I am exhausted by the time I get back to the altitude or barometric pressure I am most acclimated to.
4. I have a tendency to forget to do something easy like mail off a bill or make a phone call. It didn’t help the situation to have someone angry at me for forgetting. It wasn’t intentional and I am still very proud of all the things I do remember. Doing things like getting me sticky notes or organizing a calendar with me were very helpful. I also started relying heavily on my phone to track appointments, phone calls, and any other tasks I needed to do.
5. I have always been very confident and witty. I could crack jokes with the best of them. When my symptoms were really bad I couldn’t even understand a knock-knock joke, never mind tell one. I had a hard time relating to people because they were out doing so many things and I was always in the same routine. Go to appointments, and fight to heal the brain injury. I would eventually be vague with people because I was always telling the same ol’ story and I didn’t want to bore them.
Or I got reluctant to hear questions like “When are you going to be better?” or “When are you going to be back to normal?” I myself couldn’t even answer that question and I felt worthless. I have fought this hard to be where I am and I still didn’t feel good enough for them. Like you will only be by my side if I change back to my old self. And sometimes I would utter rude things to myself like, “Newsflash people, I don’t even remember who I was. How am I supposed to ‘get back to normal’ if I don’t even know what that ‘normal girl’ is anymore?”
I was able to build deeper friendships and relationships with the people that would keep encouraging me. If I disclosed a baby step of progression I would get positive affirmations like “awesome” or “I knew you could do it.” It encouraged me to keep fighting, and I felt some sort of self worth. Like I was finally climbing out of the darkness, into the light.
Follow this journey on My Traumatic Brain Injury.
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Thinkstock photo by byakkaya