“Life is fragile; it is short, and tomorrow is promised to none of us. Make the best of any bad situation while you are here, and others might just follow, listen, and learn from your experience.”

The Slip and Fall that Started it All and What My TBI Taught Me

By Barry K. Spiker, PhD

We had just gone through our fifth day with no hot water and, no heat. The fuses in our rental house in Prescott often blew out and in fact, the blow out before this one created black marks above the breaker box. It alarmed us as that we would be, well, trapped, should the house catch on fire. We were over 100 feet above the street, with a 150+ yard, 30-degree driveway that the landlord was supposed to clear and had not. The only other exit was some steps leading down to a street that was put in ostensibly for the landscapers. We found out month’s later that the town of Prescott had given the landlord a summons for violating the building code.

On Christmas Eve, my housemate and I had been joyously watching as a foot of snow fell around us, but now, a week later, with snow and ice all around us and guests coming the next day to celebrate New Year’s, someone had to go to the hardware store and buy new breakers and some space heaters. I knew what to get, so I geared up with heavy hiking boots, lots of clothing, and ski poles to venture down the parts of the steps with visible dirt, since the steps themselves were frozen like an ice rink. Mind you, there were no handrails either. But as a former climber who’d skied black diamond runs all my life, was in great physical condition, and to top it off, an Eagle Scout, I knew I was as prepared, focused, and attentive as anyone could be.

Then it happened! Something that would change my life forever. I slipped and fell, somewhere between 18 and 20 feet, and head planted into some rocks. I was dazed. My roomie yelled out and then bounded down the stairs like a Billy goat. She said, “give me the keys,” and off to the emergency room we went.

My knee was killing me, my shoulder felt dislocated, and I had a headache. I could not stop shaking in the 15-minute drive to Yavapai Regional Medical Center. Then came the rage and the knowing of what had just happened.

Hours of X-rays, CT scans, and MRIs later, we left the hospital. We cancelled our plans for New Year’s Day, and I took some pain meds the hospital gave me and went to bed. The next day, I tried to read the hospital’s check-out papers and found myself not understanding what I was reading. I went back to sleep.

Ten weeks later, I drove to Phoenix, met with some colleagues, and attended a business meeting. After the meeting, our Chief Medical Officer noticed that my walking was off, i.e., my gait had changed. She asked me several questions, essentially doing a diagnostic, which I hadn’t received yet because at that time, I had not seen a neurologist. Afterwards, she pronounced, “I think you have a TBI”. I asked, “what is that?” Nothing in my exit information from the hospital had even suggested that I could have a possible traumatic brain injury or that I might have symptoms eventually.

Once I got home, I re-read the hospital information and discovered for the first time that I had a tumor in my brain, and had been diagnosed with a meningioma. Soon, I was experiencing changes in vision, including seeing double and blurriness, slight headaches, loss of appetite, hearing and memory loss, and anger. After all this, I also found out I had cataracts as well, a fact which had not been picked up in a previous eye exam by an optometrist. Thankfully, an ophthalmologist found them, and it was confirmed by a second exam.

From then on, I was on a mission to recover.

I found a neurologist, moved down to the Valley, and started to participate in hyperbaric oxygen therapy (HBOT). Because I was willing to fill out some surveys and be a part of his study, I was able to receive the HBOT for $125 a session. HBOT was a godsend!

The vision got better, although I still need cataract surgery. My energy improved, my anger subsided, my appetite came back, but my memory was still troubling. I also had experienced an awful feeling of incontinence that came on shortly after I ate. When I ate, I ate at home. If I was going out, which did not happen very often, I wore a diaper. There were other “adjustments” I knew I would need to make.

One of those adjustments was getting more information…I needed data. A friend sent me a Facebook post on a conference called Rays of Hope being held somewhere in Tempe. I was late, since I never know what my prior night’s sleep is going to be like, but arrived shortly before the keynote address. The conference, which was put on by the Brain Injury Alliance of Arizona, was incredible. The information I gathered, the people I met, the stories I heard, all gave me a renewed sense of purpose and an empathetic understanding of folks who go through much worse experiences than me. I swore that very day, I was going to do something to help.

I had just finished a four-year project that was only supposed to take one of writing a book on preventing dementia, aptly titled Preventing Dementia Now. I went back to the book and decided to write a chapter on TBI and dementia. I had discovered that for a person in their 60s, a TBI can lead to a two-fold or four-fold increased chance of getting dementia. But not if I could help it. Completing the book, including the TBI additions, was in great part thanks to several people helping me and rallying around me. I have since started doing professional talks about preventing dementia and put up a website so I could blog and seek out others who have experienced a similar tragedy as me. Not only was I going to help myself, I knew I had to help others; after all, that is what a Boy Scout is supposed to do! So, I’d like to share some tips that have been personally beneficial to me in my TBI recovery journey:

• If you experience a bump, blow, or jolt to the head, get it checked out professionally.
• If symptoms persist, see a neurologist ASAP; take your lab work, x-rays, etc., and someone you trust who can also listen to what the doctor tells you.
• Closely watch for physical, psychological, or emotional changes, and ask people who know you well for their observations and feedback.
• I highly recommend therapy of all kinds; I have done 91 sessions of HBOT and have seen a psychologist for nearly 3 years. I’ve also done over two years of physical therapy and several months of both occupational and speech therapy.
•  Keep a diary.
• Know the risks, get data, information, attend support group meetings, seek information from others who have been through a similar situation, read the  BIAAZ magazine The Noggin, attend BIAAZ conferences, support their causes, and support others.

In due time, you will know what else you need. Do not be afraid to ask others for help, but be aware, they may not want to help, acknowledge that you’ve had an accident, or that you’ve changed. For example, after my accident, I knew that my work might suffer, so I told the head of Human Resources about it and had my doctors write letters to her asking for an accommodation at work (the folks at the Americans With Disabilities organization suggested it), and I did that.  As a result, I was laid off from the job I loved, was very good at, and where I’d been recognized by my students and the company for my contributions.*

So, that is my story, still unfolding. From it all, the lesson I’ve learned is, don’t ever give up, never say die. Our maker has a plan for you and as my grandmother used to say, you will never be given more than you can handle. Hopefully, my experience can help you or someone you know. Life is fragile; it is short, and tomorrow is promised to none of us. Make the best of any bad situation while you are here, and others might just follow, listen, and learn from your experience.

ABOUT BRAIN INJURY ALLIANCE OF ARIZONA

The Brain Injury Alliance of Arizona (BIAAZ) is the only statewide nonprofit organization dedicated to improving the lives of adults and children with all types of brain injuries through prevention, advocacy, awareness and education. BIAAZ also houses the Arizona Brain Health Resource Center, a collection of educational information and neuro-specific resources for brain injury survivors, caregivers, family members and professionals.

What began in 1983 as a grassroots effort has grown into a strong statewide presence, providing valuable life-long resources and community support for individuals with all types of brain trauma at no charge.

The Brain Injury Alliance of Arizona:

• Works with Congressional Brain Injury Task Force
• Houses Arizona Brain Health Resource Center
• Hosts virtual and in-person support groups for survivors and families
• Has Statewide Opioid Use Disorder & Cognitive Impairment Response team with peer support, training, and family wraparound services
• Facilitates Brain Health Advisory Council
• Manages statewide Help Line: 888-500-9165