There is no doubt that our family has gone through some very unique experiences. I find my role unique in that I usually take on the role of supporter and not directly on the front line. It's a bit like having a backstage pass to some of the most complex parts of health care. I see many things that 98% of the population don't see. I am extremely fortunate (and thankful) that I am not the subject of these traumas. The traumas that members of my family have had to endure. One stunning realization that I made not that long ago was something that isn't easy to admit. The realization that after our lives were turned upside down and being faced with life and death scenarios was the shocking discovery that it actually gave me an adrenaline rush.
Yes, I am a Health Care Adrenaline Junkie.
Don't get me wrong. I am not a ghoul that enjoys watching people suffer. Far from it. To explain this I think I need to back up a bit.
When Russell crashed in the ER in the fall of 2008, it started a cascade of events that would see us transported to another hospital, in another province. We would be there for over 6 months. To enable us to keep family and friends informed I began a blog (care page) to keep everyone up to speed. This blog gave me a purpose. It was a great from of therapy and kept me busy during many monotonous hours in the hospital. I enjoyed it...sort of. Certainly there were a great many experiences that no one should ever have to go through. Although writing about these experiences was not always easy it a very effective way of dealing with the stress.
In the years since, we have had several "scary" episodes. This journey really never ends. Each time I have been able to draw on our experience and I felt confidence that we could do it again. A bizarre sense of invincibility. This is how I processed these situations mentally.
In the years since, I have shared our story (publicly) many times. After sharing I get many predictable questions. One of the questions I usually get is "how do YOU handle all this"? I must admit the first time I heard this question it took me off guard. I didn't have a good answer. My first thought was that what I go through is nothing compared to what Russell or Susan have been through. I don't have a right to complain because I'm not the one who is sick. This question confounded me for some time. What about me? Why do I do what I do?
In my situation, I get this bizarre adrenaline rush when we come to the point of having to head to the Emergency Room. My mind shifts into hospital mode. I'm ready to do battle. This is good and bad. It is good to not be a victim and to be a strong advocate, but you have to balance that adrenaline rush with being sensible, being cooperative, and realizing this is not about me.
It has not been easy to realize that in a twisted way I enjoy the health care - high wire act. It's really important to use that positively (not negatively). It's that adrenaline rush that motivates me to try to make positive changes in health care. To do the volunteering that I do and to share our experiences. It is also important that it doesn't become all consuming. At some point you have to let it go.
Prior to our trip to Edmonton only a few weeks ago for Susan's cardiac surgery, I got a stern lecture. Prior to boarding the plane Susan sat me down and got a few things clear with me before we once again entered hospital world. Susan knows me really well and she knows when I get this hospital adrenaline rush that I tend to get a little intense. Trust me, she is not the only one to have noticed this. In her instruction to me, she flat out told me to "dial it down." "Don't make a big deal over every little thing." The lecture wasn't exactly what I WANTED to hear but it was what I NEEDED to hear. She gave me permission to relax. Thinking about what she said on the flight I re-thought my approach to being an advocate. To prioritize the things that really mattered. Let go of the insignificant things. It made our whole experience in Edmonton a lot easier for me because I wasn't wound tighter than a drum. I did a lot more observing and watching. I let staff do their jobs. I saw some goofy things happen and realizing they weren't going to be a big deal...I just let them go.
Everyone deals with stress differently. Over the years I have learned some techniques that work for me. Susan and I have discussed what we have been through many times and have discussed the effect it has had on our outlook on life and how it has changed us. I am uncomfortable calling it PTSD. That is a clinical term that I am uncomfortable with. I believe is thrown around far too recklessly. Regardless of what kind of label you put on it; the fact remains that we have been permanently affected by our experiences. One of the most difficult things for me to deal with after my "hospital adrenaline rush" is settling back into everyday life and doing the mundane.
If I were to recommend anything as a result of our experience is that understanding yourself and taking care of yourself mentally is something that everyone should take seriously.
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