My Story

BY JIM DALIANIS (WITH HELP FROM MY SLP, SHELLEY GARDINER)

It was a typical summer work-day morning. My buddy and I were travelling to work on our motorcycles—not just any motorcycle—our Harley Davidson Sportsters. It was one of those mornings when I felt like a little kid because I was doing my most favourite thing in the world, my passion in life—riding my Harley on the open road!!! Suddenly on this day, August 24, 2005, my world, like my bike, was turned upside down. The road I was taking to work was under construction and not properly marked. I hit an uneven abutment in the road and the bike and I went flying. I landed on my head. Even though I was wearing a helmet I still sustained a severe brain injury and was in a coma. I was rushed to St. Michael’s Hospital in Toronto with a police escort. With my wife constantly by my side, the rest of my family remained in the waiting room by their phones, waiting to hear if I would survive. I remained in a coma for about a week. After waking up from my coma, I spent the next three months in hospital and in rehab hospital relearning,what others take for granted—to walk, talk, and eat again. This was when “the fun” began.

After my many attempts to escape, my hospital “prison term” came to an end in October 2005. Hurray! I was so excited, I was free at last! I thought I would go home and resume my everyday life as it had been before my accident. Not understanding my injuries, I did not know what this path had in store for me. When I gained my freedom and was now home for good everything around me was foggy and I had lost my independence. The world around me was going by and it seemed that I wasn’t a part of it. I was no longer able to fulfill my pre-accident roles of being a provider, a father, a husband, a handyman, and a son. I had lost my self-identity. Now my job was to get better by attending my doctors appointments, participating and cooperating with my therapists and taking my medications properly. I was pissed off and frustrated because as far as I knew I was fine.

I spent the next year learning that I wasn’t so fine. I was overwhelmed and frustrated. I found myself missing appointments, not taking my medication properly, not remembering things to do with my RSWs and not really understanding why I had a rehab team and many different doctors. My personal strategies of coping were not effective but when my rehab team suggested electronic devices such as a computer and palm pilot I gave them the “furry eyebrow” and asked “how on earth would these devices help me”. My OT and RSWs convinced me I would benefit from using these devices because it would simplify my life. After taking their suggestions on doing this I have discovered how helpful they are and how I can’t live without them. For instance my Palm Pilot was out of commission for a few months and I was lost without it. I missed appointments and started to become disorganized. I learned the lesson about the usefulness of the Palm Pilot; this lesson was also learned with the computer. Previously I had a hard time using the phone to communicate because I had a hard time composing my thoughts quickly enough to leave a phone message. My RSW demonstrated how to use email and the internet. This opened up another path for me to keep in touch with my rehab team, friends, and family, where I have time to compose my thoughts and say what I really want to say.

Learning to use email was a big asset. Email and improving my phone skills helped me to reconnect with my friends and family both locally and overseas. I was interested to see what kind of a response I would get from them. Since the accident I had lost touch with a lot of my friends and family and I was hoping we could pick-up from where we had left off prior to my accident. I didn’t know how they would react to my having a “brain injury.” I know that before my experience of having a brain injury I didn’t know what it meant and would have wondered “Will he remember me? Can he talk? Will he recognize me?” Slowly I have been able to reconnect with my friends through email. Often, I have been the one to initiate contact and sometimes I don’t get a response which is disappointing but I guess that this is the reality of living with a brain injury.

One of the biggest frustrations I have living with a brain injury is the misconception of what a “brain injury” disability is. People around you, family and others, think that because you look well, can talk and walk, there is nothing wrong with you. It is a hidden disability. For example, prior to my injury I was experienced in the electrical field and people would often ask me electrical questions. Now because I look like I have gotten better people think that I can still answer those questions when, in fact, I am unable to confidently, and perhaps competently, answer these questions. People don’t know or understand that I need guidance following simple instructions to assemble a bookcase or connect a printer to a computer. Also, people are regularly surprised that I am unable to drive because when I am having a conversation with them they don’t see my poor judgment. I have the privilege of having a disability parking permit because of my difficulty safely walking in a parking lot and my anxiety of being unable to locate the vehicle, yet regularly words are exchanged or dirty looks are received when I use these spots.

Right from when “the fun” began I had to learn how to control my emotions in public because my behaviour was unacceptable. I remember on one occasion being in a store when some lady bumped into me with her cart and I overreacted by grabbing it, whipping it and knocking it on its side with the groceries flying everywhere. I was surprised at my wife’s reaction when she said I was being inappropriate. To share this situation is embarrassing but it shows that with proper treatment and strategies changes can be made. It has been two years since that incident and for me managing my emotions and reactions is still an issue but with the help of medication, therapy and brain injury support groups my overreactions have greatly diminished. Although my rehab team, and family gave me feedback and strategies, I found it very helpful to talk with other brain injury survivors because they really understood the difficulties and the everyday challenges of trying to run your life while living with a brain injury. When I talk with other survivors they can share what has worked for them; because they have “been there—done that,” and I find their real life experience to be most helpful.

Thanks to my wife, family, rehab workers and my hard work I am where I am today. It continues to be a never-ending battle on many fronts. I continue to struggle to be as close to my pre-accident self as possible; continue to experiment to find the proper medication combinations that work for me; continue to deal with the insurance company to get the benefits I feel I deserve; and continue to work at maintaining family and social relationships. For me living with a brain injury is as hard as going to work each day and some days it feels harder. I have not returned to formal work so people will often comment “it must be nice to be on vacation” but I would turn back the hands of time in a heartbeat to be able to get up and go to work every day, ride my Harley again, actively plan and participate in family activities, and have my independence back. Unfortunately I don’t have a magic wand so I can’t look back, I need to keep /moving forward, adapting and making positive changes in a positive manner. I want to treat every day as a new experience and not take anything for granted because life can change in a flash—the instant it takes to sustain a brain injury.

I share my story so others with a brain injury can understand that they are not the only ones who are having a hard time adapting to everyday life and everyday issues as a brain injury survivor. My best piece of advice is “Live to Ride and Ride to Live,” enjoy and live life to the fullest, brain injury or not, and never give up.