Survivors' Stories

Joanna’s Brain Injury Survivor Story

Brain Injury Survivor Story–Joanna fell down a flight of stairs, at ER she was told she had a concussion. Later tests revealed she’d had a Traumatic Brain Injury (TBI)

Thank you for your important work. I am a 34 year old, licensed speech therapist and mother of 2 young boys, living in a western suburb of Chicago. Here is my story:

I was at the bottom of the stairs, alone, unconscious, and with no idea how much pain I was really in. When I became aware of my surroundings, I remember thinking, “Why are the lights so bright?” and, “Where are my children?” 

I remember when blogging became a popular thing. I was pregnant with my first son and I had so much fun uploading pictures and stories of my pregnancy, and then later of his first few years. I found it to be a wonderful way to share what was happening in my life with my family and friends. 

When my second son was born, I tried desperately to keep the blog going. His posts were less frequent and were split between stories and stats of him and those of his brother. 

At some point, trying to raise them and write about raising them became too overwhelming so I stopped updating the blog. I felt so guilty. Why couldn’t I handle this? So many women could handle this. Why did it seem too tedious? Did it matter that I didn’t really enjoy it anymore? I felt like I should be keeping up the blog because I had started it, because other people said they enjoyed it, because it had become part of my routine. 

Mostly, I felt like I had to keep going because I knew that one day I would be so happy to be able to look back on all of these memories.

One day.

Who cares how it made me feel that day, I was worried about one day.

This was the first time since having kids that I allowed myself to feel like life was going too fast and I couldn’t catch up.

It only got faster from there. While I started to sleep more (not much more, but more), I also had two growing kids, a career, a few hobbies beyond sleeping and cleaning baby food off my couches, an extended family with its normal share of dysfunction, and a life in DC that always seemed too busy, too expensive, and too fast.

Don’t get me wrong – I was happy. I was normal, overtired, overwhelmed, mother of two young kids happy. I felt like life was hard but it was supposed to be hard. I felt like I was tired but I was supposed to be tired. I felt like things were tough now but they were going to get easier…one day.

And then I fell down a flight of stairs. It was November 2014. My second son was 6 months old, my first son was 3 1/2 and I was on my last day of maternity leave. I was on a stool reaching for something on top of the pantry when a large glass bottle of balsamic vinegar fell on my head and knocked me unconscious. I fell down the flight of stairs adjacent to the pantry which led down to our basement. 

Because I was unconscious when I fell, I hit my head multiple times on the way down due my inability to brace myself. My husband, upstairs with my boys, came running down. I remember telling him I couldn’t feel my legs. I remember him asking me who the president was. I remember my mother showing up (because, in an emergency, don’t mothers always show up at the exact moment you need them to?) 

An ambulance came and took me to a local trauma hospital. At some point on the ambulance ride I realized that, in fact, I actually could feel everything, but holy s*%t, everything hurt. I remember them giving me pain medication, I remember being thrown from the ambulance gurney to the ER table and screaming because things felt broken and the room was so, so bright and loud. I remember needing to throw up and how dizzy I felt. I remember my husband pacing nervously and asking questions. And then I remember being told to go home.

They told us that I had two injuries – a broken collarbone and a concussion. Neither required any further attention at that time and in fact neither of them had a real “fix.” Rest, buy a sling that you like, and take some time off work. They will both heal on their own with time.

In the months, and then years that followed, my injury (concussion) turned into a life changing event for myself and for my family. Like many people who suffer from a concussion, I had a few weeks of absolute horribleness (couldn’t come out into the light, nauseous, headaches, inability to handle noise, word finding issues, balance problems, etc.), followed by many months of sort-of horribleness (can’t handle a full day at work, extreme fatigue, meds and med side effects, therapies of every kind, so many doctor’s appointments, etc.).

Despite making some progress, six months after my accident I knew something was still wrong and I was tired of hearing, “there’s nothing you can do but rest.” I found a new medical team, endured new, longer tests, and had more frequent follow-ups. I asked different questions, I talked to other people who had been through similar experiences, and I read up on my own research.

At that time, an MRI revealed new findings. I had (have I guess) something called a Diffuse Axonal Injury (DAI or traumatic brain injury), meaning that the axons in my brain are damaged and that they aren’t damaged in any specific place in the brain but rather in a diffuse pattern. Typically after a concussion, a patient’s MRI will still show up normal despite the fact that their symptoms could be incredibly severe. We just don’t have the technology to see that level of injury yet. But my my injury was crystal clear.

I remember walking into my doctor’s office to discuss the MRI results. It had taken me months to get in with this doctor and I had only seen him once before when he ordered the MRI. I trusted him instantly. He had answers to all the questions I had needed someone to answer. He was smart and patient and had the ability to bluntly tell me things no one wants to hear while still seeming like a protective father shielding me from the bad stuff in life. He said, “I have good news and bad news for you.”

“The good news (I still question his use of good here) is that you have a different kind of injury than we thought, and that explains all of the symptoms that you’ve been having, the difficulties you are experiencing, and the slow progress you are making. Looking at this MRI, I would have never expected you to come into this office talking, walking, reasoning, and getting here with no assistance.” He went on, “the bad news is that there is really no different treatment plan that we would suggest to you based on these new findings. Your MRI might be different but head injury is head injury. We’ll continue the path we’re taking already for treatment.”

My mind was spinning. Surprisingly, I remember his next words so clearly:

 

“At this point I think we can say that this injury is not going to go away. You will need to change your life a bit. You will need new strategies to achieve things that before might have been much easier. You are going to have to create boundaries and schedules where you may not have needed them before. This is your new normal. You will need to learn to define it and live it in a way that works for you and your family.”

 

How does one redefine their life?

Recovery from a brain injury is different for every single person. It’s not easier or harder for any one person or group of people. 

But I would argue that being a parent of young children makes doing anything for yourself, much less a strict recovery plan based on relaxation and routines, very difficult. 

Prioritizing adult life and adult needs for a completely healthy parent is hard enough, so finding the energy and finances to spend on brain injury recovery can feel impossible. I’ve found strategies, (mostly through trial and error), that have helped me strike a balance between raising two young, loud, insomniatic kids and the peace and care that I need to give my own brain, body, and mind. Some of those strategies are actual things I do (the iPad is our friend) and some of them are mindsets that I’ve gotten used to creating for myself (You are not a bad mother because the iPad is our friend).

I’ve since spent a lot of time reflecting on what happened, trying to figure out how exactly to move forward and accept these new changes in my life that I did not choose. I hesitate to say that some event has changed me completely for the good. No, I am not a walking talking advertisement for how brain injury has made me this new amazing person worthy of telling anyone else how to live/change their life. But I am willing to say that the woman who was once worried about one day, has learned to focus a lot more energy on this day. Maybe I’ll figure out a better way to describe it after I’ve lived it more but for now, life just feels different.

Before my accident my body was overloaded. I was too weighed down with things that didn’t matter. My mind was so full of crap that it didn’t even have the common sense to be safe, to slow down, to THINK. I’ll never know exactly why that bottle fell. I believe that trying to find the “how did this happen” or the “why did this happen” are less important than the “what happens now.”

I have three choices as I see it. I can keep falling, maybe into a depression or a world of self pity. I get how people go there after something like this. Or I can stay lateral, moving slowly through a safe and predictable world where nothing ever really happens, where I don’t take chances, or make changes.

Or I can rise up.

This has been my choice. I’m slowly, uncomfortably, awkwardly rising up from a hole that evolved between my old life and my new life.

It took falling down for me to learn how to rise up. To learn how to dig out of this hole, or any hole. I hope to rise up to life that is authentic and simple but at the same time full of the chaos and love that is important to being alive. I don’t have all the answers to living like this, most of this I’m making up as I go. The important thing for me is to keep rising.

5 thoughts on “Joanna’s Brain Injury Survivor Story

  1. Hi,

    My name is Thomas Massey an ABI victim, blogger and someone trying to raise awareness on the subject of ABI, the way it manifests itself, the severity of the condition and the impact the injury has both on the life of the patient and those people around the patient. I was wondering if I would be able to use a part of this blog as a quote for part of my work if I were to fully reference you as the source. I am currently in the process of pursuing career options in the field of ABI awareness and ABI rehabilitation and in the process of developing presentations to be delivered for a prominent Brain Injury rehabilitation unit here in the UK.

    I follow Alphabet Brains on Twitter (my handle is @ABIblogger) and you follow me. I came across Joanna’s story on Twitter and found that what the Doctor said to her regarding the nature of brain injury and the way that her life and the way she would have to change and adjust it to suit both her and those around her was exactly the kind of personal insight into Brain Injury that our experience with doctors in the UK lacked. I feel that being able to use this as a quote would really strengthen the point of my presentation about the idea of constructing a rehabilitation program and lifestyle that will work for you and allow the doctors, consultants and carers to enable the patient to maximise their potential for rehabilitation. I would love to be able to quote the following section to illustrate the point I will be trying to make regarding life post-ABI:

    “At this point I think we can say that this injury is not going to go away. You will need to change your life a bit. You will need new strategies to achieve things that before might have been much easier. You are going to have to create boundaries and schedules where you may not have needed them before. This is your new normal. You will need to learn to define it and live it in a way that works for you and your family.”

    learning your strengths and limitations, establishing boundaries, accepting and coming to terms with the new you post-ABI, trying to find ways to live the brain injury without it being emotionally/physically destructive to family/friends, and finally how none of this information was given to us via the UK health service in my local area or by the local social service authorities. Having shown this quote to my family, they agree that had this type of information been delivered to us at the right time then the period of rehabilitation would have been far smoother than it actually was.

    The post is excellently written and a credit to Joanna and her writing skills. I hope she is well and would love to hear back from you.

    Kind Regards,

    Thomas Massey

    1. Hi Thomas,

      Apologies for the late reply!

      Of course you’d be able to use it, anything to help spread the word more about brain injury. You can quote anything on the site if you’d like if you reference the source.

      That sounds like an amazing career to pursue, it’s nice to speak to someone else from the UK (most of my followers are from America) Would you be looking into other brain injury charities too? Like Headway etc, I really want to do public speeches in their group therapy and things but am so scared/nervous.

      Yeah, I’ve read your stuff. It’s well written, informed and I love reading your posts

      Definitely, it’s a great quote to have… People will be able to learn a lot from it, especially from the mouth of someone who has had a brain injury.

      I’m with you on that: ‘that had this type of information been delivered to us at the right time then the period of rehabilitation would have been far smoother than it actually was.’ When I left hospital I was told nothing about the problems that would follow (and didn’t get help until 9 months later!) I thought I was the only one 🙁

      Kind Regards,
      Naomi

      1. Hi Naomi,
        That’s great! thanks so much. And thanks for the kind words. This quote should be really helpful. It’s very flattering what you say about my blogs, thanks. I’ve read some of your stuff and likewise. You’re a very talented writer.
        We felt as though defining what rehabilitation and recovery would be was never done by the NHS nor was to lead or point us in the right direction of how we approach brain injury recovery. What life would be like and how it would differ was never mentioned. That’s why I love this quote so much, I need to know there are brain injury doctors/consultants who say these kinds of things to their patients. You certainly aren’t the only one. This is a fairly common complaint by brain injury patients in the U.K. I have found. So no, you’re definitely not the only one who feels disappointed with aspects of brain injury recovery here.
        Yes I’m hoping if it goes well that I can press on and do more work for charities/hospitals/private medical. Yeah, I already write blogs for Headway Worcester as well. Been doing that for just over a year (on and off). The way I got the opportunity was to write a blog and promote it every single day like once every hour or two until it found its way into the newsfeed of someone who was the power to offer work. Put your stuff in the shop window! As I said you’re a very talented writer.
        And I’m sure that if you had the opportunity that you would be a great speaker. The first step is always the hardest. Once you do things once I find I tend to get to grips with them fairly quick.

  2. Sorry I should correct that. All of the stories I have read have been by different writers. When I say “you” I should have said “you all”. It’s great you’re getting so many people to share their experiences.
    Btw, I read recently that 2/3 of ABI care and recovery/rehab is done through private medical firms. If you wanted to and could find the confidence, there is definitely a market for this kind of public speaking.

    Kind regards,

    Tom

    1. Hi Tom,

      I’m so sorry for the late response to your comment. (This is Joanna.) Of course you can use it. I would love to see your presentation and where the information is included. I’d love to read your work in general. I would love to chat more with you. For my specific situation, I created a Facebook group called “Parents with Brain Injuries” and also have a blog at http://www.fallingdownrisingup.wordpress.com. Finally, feel free to email me at joannabmaloney@gmail.com. I would love to hear from you. Thanks! – Joanna

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