Holding

It has been a while. And in a while a lot can happen. I am so busy with just LIFE, that my midlife crisis has been put on hold- Good thing? Dunno? Bad thing? Also dunno.
So in my life I deal with alot of hard stuff. My husband and I have been having "issues" but the kind of issues that not many can boast of.  I love my husband. I love him to my very core.  This isn't the issue.  The issue is that my beloved husband had a brain hemorrhage years n' years ago and there are many ongoing health issues that sometimes wear me out.  At first I was indestructible.  The second year we were together Sam ended up in the hospital with a broken shunt. The thing had dislodged itself and fell into his stomach. At the time I didn't know what the signs of hydrocephalus were, but when Sam was up in the middle of the night mumbling about his ex wife, talking about a 25' long leisure suit and looking for a toothbrush in my closet, I was pretty sure something wasn't right. At 4am I took him to the emergency room, had him transferred to UCLA Westwood because that is where the best neurology department is and then dealt with a basically comatose Sam for 5 days in ICU. After that I dealt with getting Medicaid because we had no health insurance. It all sounds complicated and very emotionally draining but at the time it wasn't.  I did it happily, with patience, tolerance and love.  Sam was okay after this episode. And when it happened again about 8 years later, I was still able to be strong and resilient. By this time we were married and had a child.  I remember the day I decided he needed to go in- I remembered that the first time his gaze got funny. He didn't look straight at me but instead his focus was shifted slightly right. He was tired and the water build up on his brain was making his eyes buggy. I was able to get him to the hospital before he went into that weird limbo state. He had a great doctor and I was feeling really positive about it. 6 days and 3 brain surgeries later Sam came home.  The worst part about this episode was the consequence associated with our daughter and trying to help her process the "whys".
When someone has a brain trauma there are profound changes.  They never really come back the same person. There are little tweeks that are hard for most people to notice- but knowing Sam the way I do, I knew something was different.  His memory wasn't as good and he seemed to have more problems then he had before. The following year Sam had back surgery.  He had 3 of his vertebrae fused. He had been in pain for a long time and we felt this was the best solution for him. It was after this that things started shifting in my proverbial foundation. Sam was going to be released from the hospital but I felt he needed to be checked out by a neurologist.  He seemed off- The best way I can describe it and how I had for the previous few months was that it seemed like Sam was sometimes not there. After ALOT of advocating I finally got one there and after much deliberation he was given an EEG.  They discovered he was having Absent Seizures.  This are the kind you can't see. It is basically like the light turns off and Sam was having them 2 per second. He was given medication and sent home.

That first night he went on walk-about in the middle of the night. The meds made him sleep walk and he had no recollection. But he would wake up in pain because he had just had back surgery and wasn't supposed to be walking around. The second night he tried to take our daughter with him. For the first time I began to worry about the kids (We now had 2).  The meds were changed and Sam gradually came mostly back. Things were as normal as they could be for some time but Sam was never very happy again after this.
In January 2010, the day after having a conversation about taking better care of himself and me feeling a little overwhelmed by the care taking, Sam ended up in the hospital again- but this time with pneumonia.  He was in for 5 days. Something inside me cracked and I found myself feeling less compassion then I had in the past. Of course I was there for him and took care of everything I needed to do, but it wasn't with the same sense of strength, patience and tolerance.  I certainly wasn't happy about it but I still always approached everything I did for him with love in my heart. It was just the first time that I didn't really want to. I was tired because I had a 6 and 3 year old. Juggling everything isn't easy. I was REALLY excited for our summer vacation and felt I would get a much needed break.

Drawing by Jesse Prinz,
my incredibly talented
 brother-in-law

Sam arrived the day before us and on the day we arrived he went bike riding. Bike riding isn't the BEST choice of things for a guy with little balance and vertigo to do. But I wasn't there to be the voice of reason so he went. He fell and broke his leg in 3 places.  I was angry, pissed and a little fed up. This continued through the summer and spilled into the fall when he had to get his leg RE-broken and set.  Due to his already there issues he wasn't able to use crutches so he had a wheelchair in the house, we had a ramp and all my corners were getting destroyed by the dreaded chair. During this time I tried SO hard to be loving and caring- patient and compassionate. I just couldn't find it and I strated wondering if I could stay. Sam was also becoming more forgetful and becoming increasingly self centered. He was depressed and I just assumed this was the reason. This was not good. Finally about a month ago, I convinced him to go back to the neurologist because it just seemed to me that his actions were a little out there for him. He had another EEG and this time he was having focal seizures. The kind that can change personality, affect memory and make it hard for him to do everyday things.
This has all been SO hard for me but one thing I have learned from it is despite all this crap and despite how hard it is or how unstable it makes me feel I am actually really strong and obviously have a hell of alot of compassion. I will always try to be his champion and all I can hope for is the best.  I have also learned that perhaps I want to try to share this story in a more in depth way- perhaps I can help others with my experiences. I have learned that I love Sam despite the hardships.  I need to help him through this and in helping him I help us and I help me. He is my other half, my soul mate and without him life would probably really suck.