Angela McConnell

Angela McConnell, TBI with SLE (Lupus) Advocate – My Brain Injury Journey

My life took a drastic turn when I was assaulted and personally violated, resulting in a traumatic brain injury (TBI) 29 years ago. This event led to numerous neurological complications, including seizures, memory loss, and sensory deficits. These challenges were difficult, but I persevered, determined to find a new normal.

As the years passed, my health continued to be a complex puzzle. I was diagnosed with Systemic Lupus Erythematosus (SLE) and Sjogren’s Syndrome, both of which further affected my brain and central nervous system. These autoimmune disorders compounded my existing neurological issues, making daily life even more challenging.

The complications did not end there. One of the medications prescribed to manage my autoimmune symptoms caused an intracranial hemorrhage beneath my original TBI site 4 years ago. It was a terrifying experience, but by a miracle of God, I survived. Since then, I have experienced transient ischemic attacks (TIAs) and now suffer from complex migraines. My last two MRI scans have shown mild brain volume loss, adding another layer to my ongoing health struggles.

Despite these numerous setbacks, I remain resilient and hopeful. My brain injury journey has been a testament to the strength of the human spirit and the importance of never giving up, no matter how insurmountable the odds may seem. I am grateful for the support of my family, friends, and medical professionals who have helped me navigate this challenging path.

Educate yourself and your loved ones about brain injuries. I have found a wealth of resources here from Brain Injury Association of America to help my family and me. My family includes my two children who acquired concussions and are living with effects as adults. Understanding the potential challenges and symptoms of brain injury can help you navigate your recovery more effectively and advocate for the care and accommodations you or your loved ones need.

Sharing my brain injury journey with you is a way to highlight the complexities and realities of living with TBI and autoimmune disorders. It is also a way to share a message of hope and resilience for others who may be facing similar challenges.

If you had to summarize your brain injury journey in one word, what would that word be and why?

If I had to summarize my brain injury journey in one word, it would be “Resilience.” Despite all the challenges and setbacks, I have faced over the years, from the initial assault that caused my TBI to the subsequent diagnosis of SLE (Lupus) and Sjogren’s Syndrome, I have continued to push forward. Each new complication has tested my strength and resolve, but I have remained steadfast in my determination to live my life to the fullest. My brain injury journey has taught me the importance of resilience in overcoming adversity and finding hope. I believe in the quality of life, not the quantity of life.

How has your life’s trajectory changed since you have been affected by brain injury?

The trajectory of my life changed dramatically after my brain injury. Before the injury, I had what I believed to be a clear path and goals, both personally and professionally. However, the assault that led to my TBI forced me to reevaluate everything. Neurological complications such as seizures, memory loss, and sensory deficits became daily hurdles.

The diagnosis of SLE and Sjogren’s Syndrome further altered my life’s course, as these conditions exacerbated my neurological issues. Managing my health became a central focus, impacting my ability to maintain a consistent professional career. The intracranial hemorrhage and subsequent TIAs added more layers of complexity, making it difficult to plan daily life with certainty.

Despite these challenges, my brain injury journey has also led me to discover new strengths and passions. Sharing my story and finding purpose in helping others navigate similar experiences. My path may have changed, but it has also given me a deeper understanding of resilience, empathy, and the importance of community.

What are some of the common myths or misconceptions you’ve found that others tend to have about you or people who have a brain injury?

The most common myth I have encountered is the belief that once the initial injury heals, everything returns to normal. People may think that brain injuries are temporary setbacks rather than lifelong conditions that require ongoing management. This misconception overlooks the persistent and often invisible challenges that those of us with TBIs face daily, such as cognitive deficits, memory problems, and sensory issues.

The misconception I have encountered repeatedly is that individuals with brain injuries are less capable or less intelligent. The truth is that while a brain injury may affect certain functions, it does not diminish a person’s worth, intelligence, or potential. Just like so many of us, I have had to find new ways to accomplish tasks and manage symptoms to pursue professional and personal interests that are part of a fulfilling and productive life.

There is also a tendency for people to underestimate the emotional and psychological impact of a brain injury. It is not just a physical condition; it affects every aspect of our lives, including our mental health. Throughout my recovery and adaptation, I have experienced anxiety, depression, and frustration as I navigated my new reality. The emotional toll is overlooked or misunderstood based on my own experiences.

The last misconception I have found is that a lot of people tend to think that all brain injuries manifest in the same way. The effects of a brain injury can vary widely from person to person. My individual experience is unique, and there is no one-size-fits-all approach to my recovery and my adaptation to another person with a TBI. Understanding this diversity is crucial in providing appropriate support and fostering empathy.

Knowing what you know now about brain injury and recovery, are there things you might have done differently? What advice would you give to someone who recently had a brain injury or is about to leave acute care?

Knowing what I know now about brain injury and recovery, there are things I would have done differently. First, I would have taken more initiative in seeking support from brain injury support groups and mental health professionals to help cope with the emotional and psychological impacts of the injury.

I also would have prioritized self-care and paced myself more effectively. It is easy to fall into the trap of trying to push through and maintain the same level of activity as before the injury, but understanding and respecting my new limitations sooner would have helped prevent further complications and stress.

My advice to someone who has recently experienced a brain injury or is about to leave acute care is to be patient with yourself and your recovery process. Recovery is not linear, and it is essential to set realistic goals and celebrate small victories along the way.

Prioritize your mental health. The emotional and psychological impacts of a brain injury are just as important as the physical ones. Do not be afraid to seek counseling or therapy to help process your experiences and emotions. Connecting with a support group can provide valuable emotional support and practical advice from others who have gone through similar experiences. Remember, you are not alone, and there is a community of us who understand and are ready to support you.