Prognosis HOPE: My Traumatic Brain Injury – Part 3
Originally published on allnurses.com. Re-posted with permission.
This three-part series takes you through my devastating diagnosis of a TBI and how it lead to my nursing career and ultimately a prognosis of hope.
Before long I was married to the guy I had come back to California to live with. After only seven months I left that marriage and continued searching for what was missing in my life. That led to a second marriage that was also not healthy but gave me the greatest gift I could ever ask for. On September 19th, 1994, nearly ten years after my accident, my son Anthony was born. Becoming a mom restored the hope in me that had been lost on June 5th, 1985.
Until Anthony was born I hadn't realized just how broken I was. I was possibly the world's biggest victim. I had allowed my TBI to completely define me and hold me back from living. Yes, I had deficits, but I knew I was fortunate to have survived the car accident. Since then I had existed, and was not really living. I knew my son deserved so much more than that. So I got busy getting healthy. The first step in that process was acceptance.
For the last ten years I struggled with the old version and new version of me. It felt like there were two people existing in one body. I longed for the old me who was determined and always had a plan. The new me was often scared and impulsive. The fact that TBI care and management in the late 80's and early 90's was practically non-existent certainly didn't help. I cannot tell you how many times I discussed my concerns with my doctors about the memory loss and aphasia I was experiencing only to be told that I was lucky it was not worse. Basically, I needed to just figure out how to deal with it and move on.
During many of these exchanges, nurses who seemed to really understand how desperate I was for answers comforted me. They reassured me and gave me hope to keep trying. Their encouragement helped me to look deep inside myself to find the answers I was looking for. I needed to surrender to the fact that I would never be a doctor. I needed to surrender to the fact that I wasn't the same person I had been before leaving for college. But it was in this surrender that I realized the faith and strength is took to be so much more than I had ever dreamed of. A voice inside me that had been quiet at first was now getting louder. I could no longer ignore it.
At the age of 39, twenty years after my accident, I finally had enough courage to take steps to become a nurse. I quit my job, became a CNA and entered an accelerated nursing program. Very quickly, I realized that I was one of the oldest students in my class. Not to mention the only one living with a TBI. In order to retain information, I often had to rely on acronyms or word association. Much to my surprise, fellow students began asking me to share my study techniques with them. What I had previously viewed as a weakness soon became an asset.
Once I graduated and passed the NCLEX, I was very fortunate to have a job waiting for me. I went to work at Fort Logan, a mental health facility run by the State of Colorado Department of Human Services. What I didn't know then was how much this decision would impact the rest of my nursing career. It was here that I first realized how much I could use what I had gone through with my brain injury to help other people. My patients felt so disconnected by their diagnosis and the stigma that went along with it. Many times they told me how they no longer felt like themselves and the person they used to be felt so distant. They often felt hopeless and powerless. I completely understood what that felt like and it hurt my heart so deeply. I knew I had to find a way to help them reconnect with themselves and with the rest of humanity.
In order to do so, I really felt like we had to strip away all that might be causing a disconnection. More often than not, it seemed like my unit was separated into "them" and "us". "Them" being the patients and "us" being the clinicians. This automatically put all involved on the opposite sides of healing. In mental health it also tends to mean "they" have the problems and "we" have the solutions. This only further adds to the disconnection. When we forget our titles and focus more on the person than their diagnosis an amazing thing happens. We begin to connect on a very simple but powerful human level.
I started a therapeutic group that incorporated a simple four-step process to lead patients back to a place of hope. I called it "Finding HOPE" and was amazed at how many patients signed up. Although they were required to attend so many groups per week as part of their therapy, they actually seemed genuinely excited to come to this group. Maybe it was because I was a new nurse and they thought I would be a pushover. No matter what, they showed up and I was determined not to disappoint them. And so our journey began. We would focus on establishing a human connection, which is where I believe hope truly begins.
Once we have established a human connection we really need to give that person the opportunity to feel safe, supported and accepted as a human being. We need to provide them with the opportunity to speak their minds, choose a different path, be angry, grieve and sometimes just agree to disagree, without any judgment on our part. This rule applies to both the care-seeker and the caregiver. It allows us to strengthen our connection. When we have the opportunity to feel safe, supported and accepted, hope continues to grow.
Without participation though, further progress cannot be made. We first need to be an active participant in listening. This helps us better understand what our role needs to be and what the expectations are for the other person. When it's our turn to speak, we need to clarify what we expect, as well. Look at participation as an action agreement that both parties agree to. When we participate and support the participation of one another, we again connect as human beings and our hope strengthens.
The final step in returning to a place of hope is empowerment. I consider this step to be the anchor that really helps people stay hopeful. When we are connected and making the most of opportunities as active participants, we naturally become empowered. Empowered people can face any challenge without fear because they truly know that anything is now possible. They also understand the importance of empowering others. It is through this understanding that hope is sustained.
During my nursing career I have used this method to connect with my patients, their family members and my peers. It is easy to implement and using it can be a total game changer. Although this began with a therapeutic group for patients who had mental health issues, they are not the only ones who feel disconnected. Our healthcare system is broken and dehumanization grows more rampant. Today more than ever, I see my peers burned out and overworked. Patients tell me they feel unheard and have lost their faith in the ability to have their medical issues addressed. I absolutely cannot accept that this is our new normal.
My belief is we can address all of these issues through collaborative care that empowers both care-givers and care-seekers. This has led me to write a book that not only tells my story but also guides us back to seeing that we must bring humanity back to healthcare. It's time for us to stand up and bring healthcare back to a place where care-givers and care-seekers alike can thrive. I want to start a revolution but I cannot do it alone, nor would I want to. I hope you will stand with me and join the Prognosis HOPE Revolution!
For Parts I and 2 of this story, read:
In the Blink of an Eye: My Traumatic Brain Injury - Part 1
Anything but Fine: My Traumatic Brain Injury - Part 2