Steven’s Story

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Steven’s Story

I had no idea what to say. As I sit here at this moment I still don’t.

There are so many aspects of living as a family with one member having brain trauma or mental issues. When you have a family with two members with major issues and the third not far behind then it’s a whole new ballgame.

As Cathleen mentioned I have suffered from depression for most of my life. Some doctors have suggested since I was 2 or 3 years old. As a child I was teased horribly and found that temper tantrums were the only way to stop the teasing, but many thought the tantrums “cute”, and merely teased all the more. I was often the entertainment at bridge and poker parties my parents held.

As I grew older I began to lash out and as I was a large, farm fed growing boy, I often hurt the kids that teased me. So I got in a lot of trouble and the teasing just increased. Hence I developed a severe anger control problem that has plagued me all of my life. But now with the help of prescription drugs and some mellowing (but not much) with age, I no longer have too much trouble.

So, dealing with a child that is constantly hungry, sneaks/steals food and money, lies extremely convincingly, and is very good at manipulating people that don’t know her well; as well as with a wife that is alternately sharp as a tack and dumb as a stump, loving as can be and crabby as hell, and brave enough to build this website in 3 weeks and then be afraid to go to bed without me: well, it’s a lot of fun after you get used to it if you can laugh at the absurdity of the whole mess.

We used to get mad at Savannah when she snuck food, I was the first to come to grips with the fact that she couldn’t help it, it was beyond her control. I used to get mad (sometimes still do) at Cathleen when she starts to tell me something and makes no sense, or when she is doing a simple task that should take seconds and it takes her 5 minutes, or when I tell her something and her response is just a blank stare.

I have had to learn to live with the fact that both my wife and daughter have brain’s that just don’t work as well or as fast as most people. I have to slow down my reaction times to match theirs and in many cases explain things more simply and more often than usual. Plus I have to lower my expectations (but not too much) to match their abilities.

On expectations, NEVER stop expecting someone with a brain disability (or with any disability for that matter), to try beyond the best of their ability. I’ve met a lot of brain trauma patients that had no idea that they had any limits on what they could achieve so don’t arbitrarily place limits on a family member.

If we had believed what the doctors told us about Savannah a) she wouldn’t be alive today and b) she would weigh 400 pounds by now.  Instead we have a 19 year old who has beat the odds many times.

In the years after Savannah was first diagnosed with her tumor and had her initial surgery we learned to live day to day. I can’t count the number of times we would leave the hospital only to return the next day or sometimes even the same day.

Countless trips to the ER, scheduled appointments, runs to school to bring her home; we could never plan anything in advance, it had to be spur of the moment and even then Savannah could start feeling bad on the way there.

So we learned to enjoy ourselves at home. Games, movies, arts and crafts, and simple outings became our way of life. Vacations were out of the question

As a family we learned to adapt to whatever Savannah’s condition was at any given time. Now we adapt to Cathleen’s. Some days she is full of energy, other days she has a hard time getting out of bed and can’t concentrate at all.

All in all I’d say there are just three rules in living with someone with brain trauma and mental illness. First, always be conscious of the difficulties that someone with brain trauma and mental illness has. Second, no matter what, love them because it’s not their fault they act the way they do. And third, whenever possible, laugh at your situation because it will help you feel better. Loving them unconditionally is the most important thing. That’s what makes our family the family we are!