3 weeks ago, at the suggestion of her neurologist, Marissa began the Mayo Clinic's Pain Rehabilitation Clinic. This program is an 8-4:30, Monday through Friday program for a MINIMUM of 3 weeks, depending on the patient's progress. Many may not know, in addition to her 'regular' seizures, she has been having non-epileptic seizures (PNES), which present themselves as a regular seizure but without the brain activity disruption. Her seizures, unfortunately, are uncontrolled and, outside of her implant and medications, are out of her control. The PNES activity IS something that CAN be in her control. So, the hope was to go through this program to start learning the tools to make progress in controlling the PNES seizures and improving her quality of life.
She has had a team of Mayo doctors and nurses working with her for the past 3 weeks in a setting that can be maybe comparable to support groups for those trying to break addictions. They made it very clear this will not be easy. They made it very clear things will get worse before they get better. But, they also made it very clear, their program DOES WORK if you remain dedicated to it.
Part of the program also incorporates a friends/family/caregiver component where I sat in on sessions where we were able to learn what they were going through, ask questions on what roles we are supposed to play to help them, and many of us learned what we thought we were doing to help, was actually making things worse! Not intentionally, of course, but we/I were making things worse and not better.
How is this? The main analogy they used was the toddler who throws a tantrum in the store. Many of us, at some point or another, gave in to our toddler by giving them something to stop their behavior, and as we all know, enforcing that behavior works to get what he/she wants. I learned I'm suppose to:
1. Not talk about how she feels. The more I/we make her think about her seizures and her condition, the more it conditions the brain to continue to feel/act as she has. I am guilty of this one!
2. Make sure she does things FOR HERSELF! She needs to learn to be selfish and try not to do and be everything for everyone. I have tried to encourage this behavior, so hopefully hearing it from others will help.
3. Make sure she doesn't do too much when she feels good so she ends up feeling bad (referred to as 'Push and Crash'). This is a behavioral change that will be hard for her.
4. Not be a 'Pillow Fluffer' and do things FOR her when I see/know she's having a bad day. And, don't be a 'Boot Strapper' and tell her to 'suck it up' and that I know she can do it! I am guilty of both of these at one time or another!
After graduating from the program, she will have to continue to work towards making these habits a part of her lifestyle. Think of a behavior you wanted to change and how hard it was to do it. Many times we give up and revert back to our original behavior trait. She is determined to ride out the setbacks and continue to make progress to a better self.
So, if you have gotten this far in reading her update, you are someone who cares for her or has someone with a chronic disorder or someone you know and love has a chronic disorder and you have related her journey to your experiences. I ask this of you if/when you talk to Marissa during this time of her working on this change; instead of asking how she's been feeling, ask her what she's been doing. Tell her after hearing all the things she has been doing how great it is to hear that she is doing so well. Positive reinforcement is a MAJOR part of this rehabiltiation program. If you live close to us, invite her to do things with you. She's been a 'prisoner of her home' for too long and we are going to do all we can to help her not feel that way.
One of the hardest part for her is she is having to give up her blog for an extended period of time. The doctors in the program feel even her talking about Epilepsy in ways she feels is healthy and helpful, are not in her best interest as she works on this behavioral change. I am going to plan on continuing it from my perspective, while keeping those who have followed her on this journey updated on her progress.
We know she will always be living her life with an occassional GLITCH, but we are going to be more focused on the LIVING LIFE and less on the occassional GLITCH!