My New Normal, Gerry Tissenbaum, COO The Butterfly Cares

My new normal really started on the Labour Day weekend 2013, when my wife and I were dropping our daughter off for her sophomore year at Harvard. Molly was excited about playing her second year of Harvard Hockey. Everything was going great. We got to Cambridge on Thursday, unpacked her room with her and picked her up to do some shopping for her dorm room after her baseline concussion test. We joked with her about her baseline test, as she had had two previous hockey related concussions when she was younger, the last at 15 years old which took her 6 months to recover from.

I was stopped at a red light, Molly in the back seat and Lisa on the front seat passenger side, when, after the light turned green I pulled out of the intersection. I can still see the movie/TV show accident of the blue SUV smashing into the front passenger door and lifting the car off the ground. Lisa’s motherly instincts took over and immediately went to see if Molly was okay and could move, and to get out of the car. Within second an ambulance (which happened to be across the street) was there to put Molly in a collar and took her and Lisa to the hospital. Lisa had some glass in her arm and legs, but otherwise seemed okay. Molly said she felt fine but no one was taking chances.

Both were checked out at the hospital and released. The doctor examined Molly and said she was okay, take it easy, maybe take a few days off from hockey as her neck would surely be stiff. Lisa was discharged with papers, that to this day she still does not remember! Talk about an indicator of a serious concussion...

We spent the next two days moving Molly in and just staying around, as we were all very shaken up by the accident. We repeated over and over again, “WOW, we are very lucky”. And yes we were, but that was not the end; it was the beginning.

I drove home from Boston because Lisa was stiff and ‘just a little off’. Molly seemed fine, and said she was just sore. I think it was Tuesday morning when Molly was going to see the trainer when she called and she said she felt like her head had exploded. She had to stay in the dark room and was immediately diagnosed by the doctor at school as having a concussion. Again Lisa’s maternal instincts took hold as we deal with Molly; getting her to see the Doctors at Harvard and making sure her friends were watching out for her became her priority, and as a result, not paying any attention to the turmoil going on inside of her own head. We had to bring Molly home the next week for more intensive “rest and dark” which Lisa participated in with her, not because she thought there was anything wrong, but because that’s what parents do. Lisa knew she was not right, was having headaches and trouble focusing but thought nothing of it as her baby was sick.

Molly had to go back to school a week or so later to withdraw from the year because we all realized quickly that she wouldn’t be able to be a student, let alone a student athlete. That week, Lisa had an appointment to see her GP so I drove her downtown as she said she was not “comfortable” driving. I knew something was wrong as Lisa is a strong confident driver. When she was talking with Dr. Greenberg I said that she should tell him about her headache she realized she was having now that Molly was back at school in the dark preparing to come home for the year. Dr. Greenberg assessed her and said she definitely had also suffered a concussion. Like a true mother she downplayed it as we had to get Molly home.

Well the year off that Molly had from school and Lisa had to recover, was 6 plus months of darkness, rest, and not much else. The crash took away their mutual love for reading, music, not to mention that Molly was away from Harvard, hockey, friends, and normalcy, and one can see why depression is a side effect from suffering a concussion. Molly started to get considerably better in the new year, that of a 20 year old, and got back to her new normal, as we have described it. 100% of what she can do today, but certainly less than before, but it was and is Molly’s new normal. You deal with your limitations, and strive to be the best with what you have.

Lisa, on the other had did not progress, in fact three years later she was “still a mess”; that was the medical term Dr. Greenberg used to describe Lisa’s brain injury. In came Dorothy Hillman, a true healer and she helped Lisa, brain/body and soul get better. It has taken four years. We had a concussion cake to celebrate this year, so we are getting there (last year it would have still be too soon).

Lisa’s also finding a new normal, but it is also not comparable to her old normal. I know that she has to have her recipes open to cook, something that is not normal for a great chef like her. Lisa who is an AVID baseball fan, and has been going to game since she was a child, can’t go to the Skydome (yes we still call if that) as the background noise is too great. She had trouble reading books, and stopped reading almost all together for a few years, as she had to re-read the chapter that she just finished if she put down the book. Now she is reading again. There is the ongoing list of things that must get done on a daily basis. This started out as a coping mechanism and now is part of her routine.

My story is often not heard as we are only starting to hear the stories of those that deal with the person suffering from the concussion and not the caretakers, husband, wife, or sibling of the victim. We have to realize that the little things that were routine are not any more. Your spouse is not purposely forgetting what you discussed last week. They are not moody as a reaction to something. Just about any personality trait that is different than before is not a choice. They a may not seem to be the same person as before, and often they never will be, but IT IS NOT THEIR choice. Their brain has been changed in ways that medicine is only starting to understand.  Coming to this understanding requires great compassion, patience, and empathy.