Life With a Traumatic Brain Injury
By Amy Zellmer, February 9, 2015
As I near the one-year mark since my accident, I have thought a lot about writing a blog post on it. Actually, the entire past year I have thought a lot about it. But I didn't. I didn't have the courage. I've been scared. Scared of what people might think. Scared that people will be snarky or rude. Scared of what I might feel. Scared of reliving the fall. Scared that no one will read it. Then I heard a voice in my head say "Screw it! Writing is your therapy, Amy. It's time to write it down and get it out of your head!" If my story can inspire even just one person, it is so worth getting past my fear, so here goes!!
It's been almost one year since that cold February day that I slipped on a patch of sheer ice in my building's driveway and landed smack on my head. I can still feel my feet slipping out from under me, knowing there was absolutely nothing I could do as both feet went straight up in the air (I imagine I looked a bit like a cartoon). I can still hear the terrible, gawd awful sound of my skull making impact with the concrete. I can still remember thinking to myself "Oh, no. This is really bad." I can still remember sitting up and finding Pixxie about seven feet away from me, tail tucked under, looking at me like "What the heck just happened, mom?" I remember the excruciating pain on the back my head, and the swirling, flickering lights in my peripheral vision.
We (me and my team of doctors) are pretty certain that I blacked out for at least a short period of time. I had been holding Pixxie (my 8-pound Yorkie) in my left arm at the time of the fall. Given she was about seven feet away when I sat up, there was at least a short period of time in which she got up and walked away from me. Who knows, she could have sat there and licked my face for five minutes first. There was no one around at the time, and security cameras don't capture that part of our parking lot. I will never know for sure if I laid there limp and helpless for seconds or minutes.
We think that my body reacted instinctively and protected Pixxie like a baby, hence why my arms didn't go down to break the fall. The full impact of my fall was taken by my skull. Let me say that again: The full impact of my fall was taken by my skull. The resulting injuries as diagnosed by my chiropractor and neurologist included: a severe concussion, mild traumatic brain injury (TBI), torn/pulled muscles in my neck, throat, abdomen, and chest and a dislocated sternum. I hurt in places I didn't even know it was possible to hurt.
In the days to follow, I think if heard one more person say "It's just a concussion," I may have punched them in their throat. Concussions often lead to TBIs and are quite serious. According to the CDC (Centers for Disease Control and Prevention), there are approximately 1.5 million people in the U.S. who suffer from a traumatic brain injury each year. 50,000 people die from TBI each year and 85,000 people suffer long-term disabilities. In the U.S., more than 5.3 million people live with disabilities caused by TBI I mean, people DIE from falls like the one I took, somehow I came away with my life. For that, I am forever grateful.
It is one year later and I am still struggling with the effects of my TBI, as well as all of my physical injuries. I have felt an entire spectrum of emotions: anger, rage, fear, sadness, depression, hope, joy, frustration, contentment. I struggle with crowded restaurants or shopping malls. I can't handle over stimulation from multiple sources (light, sound, vibration). I get confused easily. I forget things in seconds, but can remember them days later. I suffer from constant vertigo and dizziness. I am up and down emotionally like a roller coaster. I am exhausted beyond comprehension. I grab for words that seem to have disappeared into thin air. My personality has changed, and I am aware of my mood swings. I have anxiety and panic attacks -- which scared the crap out of me when they first happened. I have some really good days. And I have some really bad days. When I wake up in the morning, I say a little prayer that it's going to be a good day, because sometimes the bad days are just more than I can handle.
People make assumptions that I must be fine because I have an "invisible injury" and they see me constantly working my butt off. What they don't see is the pain and exhaustion at the end of the day. The consecutive days spent in bed because I physically don't have the strength and energy to do anything. The ice packs and ibuprofen. The hot baths with epsom salts. The rescheduled sessions and missed hours of work. The massages. The physical therapy. The PTSD therapy sessions. The 70-some doctor visits. The uncertainty of whether i'll be able to continue as a photographer, which is a much more physically and mentally challenging career than most people realize. But I have no choice other than to power through it and keep on working. As a single woman who is self employed and living on her own, the financial struggle has been very real, and frightening at times. What little I had saved away was eaten up after my divorce a few years ago. I am not complaining. It's all been working out just fine. I just want people to really understand the struggle: physically, emotionally, mentally and financially.
When I wasn't able to get out of the bathtub one night shortly after I fell, I realized that I needed some help and support. I decided to go stay with my parents for a few weeks. While my parents aren't the best caregivers in the world, it was comforting to be around someone and know that they were there in case I needed help. Being alone in my loft gave me an overpowering sense of loneliness that I needed to escape. I am quite independent and tend to overdo things, and this has been a great lesson in patience and asking for help.
Now, I am not telling you all of this to make you feel pity for me. Far from it. I want each and every one of you to understand that invisible illness are very real. Chances are you will run into someone with a TBI on your next trip to the store (5.3 million Americans are living today with a TBI-related disability). Next time the person in front of you at the grocery store is having a hard time counting out their money, or they are walking a little too slowly in front of you, or they can't remember what they were saying to you mid-sentence, or they are staring blankly at the shelves with their cart in the middle of the aisle, please, have some grace. We can't help it. It is who we are now. Every day the journey gets easier, but there's a very real chance that it will never go away completely. Every single day someone takes their life because they can't cope with the chronic struggles of a TBI. I do not want to be one of those people.
Please! Don't ever say to someone "It's just a concussion. You'll be fine." That is not what we want to hear, and it's simply not the truth. Instead, ask them if they need anything. Offer to bring them a meal (I couldn't figure out how to use my microwave, let alone my oven, for a few days after my accident) or run some errands for them (I had no idea how to use the ATM at the bank).
Offer them your ear and/or shoulder (I thought Bill Clinton was our president). Show them that you care (it's a very dark and lonely place). While you can never understand what it's like to live with a TBI, you can show compassion and empathy. Instead of asking "How are you feeling?" ask "What can I do for you?" Also, don't make fun of the situation. I remember on several occasions people saying things like "Well you shouldn't be wearing stilettos out in the ice" or "Sounds like you need to wear a helmet in your parking lot" or "Were you attempting Crashed Ice?" These attempts at humor are not at all funny in the days after a traumatic accident. Not to mention that brain injuries cause you to cry at every little thing. (I still cry when I see a stupid cat video on YouTube). (BTW, I was wearing winter boots when I fell. Not stilettos. I wanted to clarify that for the reader!)
I am eternally grateful for a friend that offered to spend the night at my house the day I first fell. I was terrified of going to sleep that night, and it was comforting to know that he was just downstairs if I needed him. I am grateful for the friend that brought me fruit and made me chili. I am grateful for the friends that called to show they cared and asked if I needed anything. I am grateful for the Doctor with a positive attitude who continually reassured me that I would get through this. I am grateful for assistants who jumped in to help me when I needed it. I am independent and stubborn, so it was very hard for me to sit back and accept all of this support. But without it, I truly may not be sitting here today.
Situations like these can cause some friendships to end, and new friendships to form. I am thankful for the amazing people who have come into my life since my accident. The universe has given me more than I thought I was capable of handling, only to prove to me that I am a lot stronger than I ever thought. I have learned to slow down, honor my body, give myself grace, and know that everything really will be okay. I know that everything happens for a reason, and there is a reason the universe wanted me to experience this. I am grateful for the lessons I am learning from this, and the ones that I have yet to figure out. One day at a time, one foot in front of the other. When the going gets tough, really tough, you gotta keep on going!