On being a Warrior - Surviving the battle

Stepping a bit out of the original concept this blog, Lars mentioned that I had been fighting a different battle lately.

I was a bit confused at first, but as I look back over the last year, that is exactly what I have been doing.

To explain this- last June, Doug sustained brain injury in the end of May and beginning of June. In both incidents, his helmet was padded and worn properly. The physics of how he sustained the concussions is will never be known as we can't replicate the conditions. We now believe that the first blow was compounded by a over-stout face thrust at Lilies shortly after. I think that neither alone would have occurred in any real sustained damage, but the second concussion happened when the first had not healed. This phenomenon is now being recognized more and more in contact sports.

The first trips to the hospital were confused with the focus of heart conditions, as Doug's heart experienced irregular rhythms. After sufficient testing to confirm his very excellent cardiac health, doctors started looking at/into his head. Strokes were ruled out, but numerous neurological symptoms remained. Our primary care physician suggested an MRI, which showed a small area which could have been a bleed, but was no longer blood.

We decided to to go directly to Neurology of the University of Minnesota. We've held the U Hospital in high regard for its outstanding research and staff.

This is where my warrior mode kicked in. They were dismissive from the start. They didn't answer any questions at all. My initial thought was they wouldn't answer anything until they had a conclusive diagnosis due to the high risk of litigation in accidental brain injuries.

I kept on the Neurologist about TBI (traumatic brain injury) and Diffuse axonal injury. I researched both extensively. Doug had these symptoms of TBI, Physical pain and seizures, abnormal EEG's, loss of cognition and memory, loss of speech, dizziness, visual disturbances. What he lacked was an MRI with bleed/damage in a part of the brain that matched the mapping of his symptoms. The MRI was taken over 3 WEEKS after the injury, and indicated some former bleeding, but when the bleeding occurred could not be determined and it was not in a part of the brain that affected any of his symptoms.

Therefore, because one test did not indicate brain injury, neurology refused to believe he had sustained a brain injury.

Doug had told me to reign in my comments at the appointments because he felt my aggressive attitude was endangering the patient/doctor relationship. Doug offered to undergo psychiatric evaluation. The evaluation's showed he was indeed normal and not depressed or stressed.

When the neurologist harped on the psycho-somatic disorder again, I couldn't be quiet. I wanted to grab him by the collar and give HIM brain damage.

"How can you ignore seizure-like symptoms, headaches, memory loss, vision disturbances, verbal loss and decide an mental illness diagnosis because one test doesn't show damage?"

"I know brain damage occurs without MRI evidence. Diffuse axonal injury will affect different areas without any evidence on an MRI." My voice rose and rose.

The very agitated neurologist replied tight-lipped "What do you want US to do?"

I told him at least another MRI. He mumbled something and said, "I'll be back".

Doug was pissed about my outburst. I did say I'd keep my mouth shut but I just couldn't. That man wasn't practicing medicine of even science. He just wanted us to go away.

He didn't come back to the room. He send his intern who scheduled the second MRI.

The second MRI showed the bleed had disappeared. Which meant it was a bleed, which neurology denied- they said it was an old calcium deposit. Calcium deposits don't disappear in three months. Bleed=injury. Even when confronted with this information, University of Minnesota Neurology refused to acknowledge his problem was a brain injury. We had wasted five months and went through a lot of pain.

I decided we had to go to Mayo. Finally after the last straw with the MRI, Doug finally agreed. Weeks later, and finally at Mayo's Brain Injury clinic, I faced that same attitude, "The symptoms are seen in psycho-somatic disorder- We're not saying your symptoms are caused by mental illness, but we can't say that you had an injury either."

Their attitude was of "Why are you here, wasting our time? You can walk and talk!"

Through the worst of this, I researched and researched and read. I worried. And wondered If I would ever have the old Doug back. Prayed his pain would stop. Wondered if I would be taking care of us both for the rest of our lives. I scrimped so we'd last longer on my income. Brainstormed Christmas gifts that would cost little. I got some counseling help. I watched and observed every tiny symptom and change Doug had. I refused to cry in front of him. I carried my bandanna in backpack, and would pullover off the road and sob. Driving solo used to be a joyous thing for me- it became the painful escape, the only safe play to feel my pain and fear. The doctors weren't listening, and Doug was just enduring the pain. I fought this entirely alone.

I lost a bunch of weight all at once- 15 pounds in two weeks. Several months later, my hair started falling out- not in clumps, but handfuls in in my hairbrush.

The brave face was kept up at work. I dreaded anyone stopping by to ask how he was doing. I couldn't sound convincing anymore, "Doug? oh, he's doing fine."

Christmas was horrible. Doug's vacation money was done, and we still could not get the short-term (HA!) disability money- we fought with them for 12 weeks. He also had run out of family medical leave time. If he didn't go back to work, he would lose his job- And I did not earn enough to pay both mortgage and medical benefits for two. The thought of me working two jobs and taking care of everything else- was almost impossible for me conceive.

He decided to go back the week of Christmas, when most staff was out and the week was short, along with another short week after. We made plans for help getting him home if he couldn't make it through the day. He worked with his boss to set boundaries and expectations. And he made it through. And as the more he worked the faster he improved. The days were short, but things came back bit by bit.

By the new year, it was clear that he would regain most everything that was lost.

Now, he still gets exhausted, but everything's back.

And I feel oddly empty. There were lessons learned in strength, and patience, and endurance of pain, but they seem like they are fading, fading.

Things act the same, but they feel different. I no longer feel 'young' for my age. I keenly feel exactly 47 years old. My faced aged this year. No more is anyone going to guess I am ten years younger than I am. I am sad that I measure my mortality now. I walk carefully, am less spontaneous. Youth has flown, I and was not ready to say goodbye.