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Life With a TBI: What I Wish I Had Known When I First Hit My Head

It has been 13 months since my fall, and I am just NOW starting physical therapy for my injuries and occupational therapy for my cognitive issues. I feel like I am late to the party, that I should have been here months ago. Late is better than never, but I have never been one to be fashionably late.
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As Brain Injury Awareness Month continues, I am sharing stories of living with a Traumatic Brain Injury (TBI) and how it affects survivors and the loved ones around them.

There are so many things I wish I had known when I first fell on that patch of ice, landing directly on my skull. The sound of the "thud" is something I will never be able to clear from my head. It is my scar, my reminder of how quickly life can change. I knew from the excruciating pain I was experiencing at the impact point on my head that it was bad, real bad. But I had no idea how my life was about to change.

I consider myself fortunate to have found a Doctor right away who specializes in head injuries and concussions. However, there are still many things I feel he could have done differently to prepare me for the unexpected roller coaster that I was just getting onto. I hadn't even buckled the proverbial seatbelt yet in terms of what I was about to experience.

I remember the first day pretty vividly. I fell at about 8 a.m. and was at the doctor's office by 10 a.m. He checked me over and stated that I a severe concussion and had also torn a few muscles in my neck, throat, and chest. Oddly, I didn't feel any pain other than the piercing knife stabbing into my skull. It hadn't even occurred to me yet that I had other physical injuries. It was actually almost two full days before the pain set in, and then it felt like I had been run over by a truck.

I noticed many cognitive deficiencies right away the first day I fell. I was told that this was "normal" and I should start to see improvement in 6-8 weeks. So as I neared the end of the eighth week I was starting to panic. "What's wrong with me? Why am I not getting better? Is there something seriously wrong?" I was experiencing a lot of confusion, and I was having a lot of trouble finding the word I was looking for, and you could hear in my speech that I was taking longer to complete sentences than I should. My doctor finally sent me to a neurologist at this point, who ordered an MRI to rule out anything severe. It wasn't until this point that anyone started talking about TBI. Even then, I was told it could take a few months to improve, and then not until the six-month mark that I was told it could even take up to a year or longer.

What I wish more than anything was that my doctors had been more forthcoming with me. I understand that every brain injury is different, and not everyone will suffer the same symptoms and time frames. However, in hindsight, it is pretty clear to me that 6-8 weeks isn't a realistic timeline. I have no doubt in my doctor's abilities, and I know he was trying to do me a "favor" by telling me I'd be fine in no time. But the truth is, I think he was damaging my recovery efforts by doing so.

I wish I had been sent to occupational therapy right away. The neurologist brought it up, but nothing ever came of it. I wasn't in a proper state of mind to advocate for my health in the way that I normally would. I didn't have a caregiver or spouse living with me that could advocate either. I was alone in my journey.

When I reached the six-month mark of my recovery, I started experiencing more dizzy and balance issues than I had been having previously. I started having anxiety because I didn't know what was wrong with me, I was worried that I should be getting better because that is what the Doctor had said. I was thrown into a very dark, lonely place. I was starting to become depressed, something that I wasn't familiar with. I knew I was depressed, yet I didn't know what to do about it. I had no one in my support system to turn to. I felt very isolated and alone.

This cycle of despair went on for about three or four months before I had a complete and total panic attack. I honestly thought I was having a heart attack. My heart was racing, my body felt like it was floating, I wanted to cry and scream, but I had no idea why. Fortunately a dear friend was home and helped me calm down. She knew what was happening, as she had experienced panic attacks before herself. I was left feeling shaken and scared. "What is wrong with me?" I kept thinking.

The next day I spoke to my doctor about what had happened. He assured me that this was "normal" and part of the recovery process. He was expecting it, as he knew that it would eventually happen to me, and was surprised it had taken me this long to have one. This was yet another thing I wish I had known about, it would have saved me from the deep sense of fear I had been feeling during the panic attack. Fortunately since that night, I have not had another attack. I have occasions where I feel the anxiety creeping up, but I am now able to fight it off with deep breathing and meditation.

It has been 13 months since my fall, and I am just NOW starting physical therapy for my injuries and occupational therapy for my cognitive issues. I feel like I am late to the party, that I should have been here months ago. Late is better than never, but I have never been one to be fashionably late.

There are so many other things I wish I had known in the beginning, the list could go on and on. I realize that our doctors can't predict the future or know exactly what is happening inside our brains. Again, I feel blessed to have found a doctor right away that understood concussions and TBI. My wish is that more doctors would begin to understand the true complexity of TBI, no matter how seemingly innocent the injury appears at first. Patients and caregivers value and appreciate knowing the "worse case scenario" so that they have something to strive for (not being "worse case") and can feel like a warrior when they come out on top!

Please join my Facebook Tribe if you are a survivor, caretaker, or loved one!