Every year, approximately 2.5 million people in the U.S. sustain a traumatic brain injury. In 2003, I was one of those included in that statistic. While all brain injuries are different, it is imperative that survivors have a good support system that may include family, friends, and co-workers. For me, I believe the opportunity to see, talk, and listen to encouraging words from my support system, helped me to continue pushing forward. Unfortunately, I had my accident on a Sunday morning, so I did not have a chance to send out an email or text message to let people know about my current location or my events for the day. I had to rely on my close friends and family to communicate my whereabouts, after they learned I was in the Intensive Care Unit. However, once people learned about my status, they came from near and far to check on me!
My ICU experience was unique, because patients in the ICU normally can only have visitors from their immediate family. However, in my situation I believe my mom allowed my large support group, made up of friends, co-workers, and family, to visit me in the ICU without a problem. I know going to visit friends and family in the ICU is hard, especially when a wardrobe change is involved. (FYI- In the journal left in my room in the ICU, I see there is a note from a friend reminding all visitors to wear the yellow gowns, so germs stay within the hospital setting)
I honestly appreciate all of the positive energy brought while I was in the hospital. I did not know you were there, but I learned of your visit, as I was reading through my journal. Because of the love and support I received I was very determined to get better! I do not believe any of my visitors knew much about brain injury, so they could not provide others with insight on a full recovery.
I remember having dreams where I would wake up and everything was working again. I also hoped to receive a recovery plan that would take me back to where I was. After learning there was not a guarantee that I would be able to return to the physically functioning young man I previously was, we all had to adjust our expectations.
While I recovered, I loved when family or friends would visit. During your visit, it was my time to hopefully show off that I was doing more than when they last saw me. I am grateful to those who came to visit me from Chicago, and I appreciate those who came to visit from other states.
I think my recovery had to do more with trying to fit in with my family and friends, versus them adjusting to being around me. You may ask why did I feel this way? Well…I never wanted to stick out. I did not want anyone to feel like I required extra attention because I was now disabled. I was trying my best to be independent. If I could help it, I tried not to ask for much assistance, and I did not want my friends to feel like being around me meant extra responsibility. I remember the first time I stayed overnight at my grandma’s house by myself, she was nervous because she did not know how much care or assistance I required. However, after spending the night at her house, she was surprised that I did not require much assistance. I think that experienced gave her the confidence that I was getting better. I encourage you to visit your friends and family in the hospital. It lets patients know that you really care and are empathetic to their situation. However, if you are not comfortable visiting your family or friend in the hospital, it is okay because I know what it is like to visit a loved one in a coma. I just ask that you try to show them some support if you can.
After I was finished with rehab, I loved when friends or family would come over to my house to take me outside and assist with environmental enrichment. I appreciated getting out of the house, going someplace I hadn’t visited in a while, or even taking me out to a ball game. Doing these things again felt normal. When I was out, doing normal things, looking normal was like independence. So mentally, and physically I had to learn to be comfortable in bathrooms that were not handicap accessible, and I had to be able to walk stairs with the railing on my weaker side. I knew I was not 100%, but I did not want to be looked at or treated differently, based on what you may see.
“There is evidence to suggest that lack of EE, whether from lack of resources or limited ability to engage in such environments, may play a role in post-acute cognitive and neural decline. Maximizing EE in the post-acute stages of TBI may improve long-term outcomes for the individual, their family and society.”
I received a lot of EE when I was in Day Rehab, but I think your rehab is enhanced when EE is safely done outside of the rehab environment. I think this was critical to my recovery! I also believe being around friends and family who were not afraid to give me EE was most helpful. Receiving visitors, cards, flowers, or even cookies let me know I was cared about. I was most appreciative of the EE I received early in my recovery when I had my 30th birthday party in the hospital and even more so when I celebrated out in the Wrigleyville area, after getting out of Day Rehab. My friends and family helped in my recovery, as they watched out for me when giving me exposure to the community, and that exposure forced me to learn how to fit in. I knew I did not do everything like everyone else, but I did not want to embarrass myself trying to step out too far attempting to do something without proper preparation.
“Traumatic Brain Injury and Post-Acute Decline: What Role Does Environmental Enrichment Play? A Scoping Review.” PubMed Central (PMC), https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3628363/. Accessed 7 May 2021.
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