Neurodevelopment Fun

With study and research I have come to be fascinated by the brain and its impact on various areas of development. I was directed to a TED talk this week and found it to be fascinating as well as the implications for healing and developing healthy neural pathways was quite amazing, and then I found an old favorite. Here to explain the brain in simpler terms are Pinky and The Brain- Parts of the Brain.

So much fun. Here is the lecture of Joe Dispenza- enjoy.

I Am A Faker: The Reality of Living with a Disability

There is so much misinformation and propaganda out in the world regarding the disabled. I hear people talk about the ones that "fake it" and social programs such as SSDI are called "entitlements". Disability Fakers by the Mighty  Being judged without people knowing my story is awful. I worked for 20 years. I have held a job since the time I was 16 years old. To be part of a demographic spoken of as expendable or a parasitic is an awful feeling. Here is the reality, I am different.

I am different. My body is different, my mind works differently, and my ability to recover and respond to situations is very different. I don't fit a mold. I don't fit in the nine-to-five, measured box that is comfortable for society. Interacting with me is harder, I don't get out much, I am not the life of the party. I am not charming and exciting to be around. I will not improve your social cache. Knowing me offers no financial improvement, no special bonus points, no benefit other than my company, but that does not make me worthless or expendable.

I am quiet, unassuming, going about my day which consists of rehabilitations activities, medical appointments, maintaining what part of my life I can, and trying to get better. I am lucky and blessed. I know who I am and what I can do if given the opportunity, but I am still healing. The damage from my brain tumor was extensive and to a part of my brain that is vital to function. I am working to improve and I am so very grateful that I have that opportunity that is denied to others.  I know and have lost dear friends who had no hope of improvement. 

Every three months or so I have to complete another packet from my insurance company assessing my skill level to see if I can return to work; it has been 19 months from the time of my emergency brain surgery. Along with questions regarding daily activities I must submit information from each of my specialists- I see six, soon to be seven medical providers. I must have an assessment of my personal skills completed and I am required to provide documentation in writing with notes and contact information. It takes me days to compile this even though I save copies of everything. No part of my life is left unexplored, no information is too invasive or off limits. I have no private life, everybody knows everything.

Every day I fake it. I fake not hurting, I fake my smile. I fake understanding when things move too fast for me. I fake being thoughtful when I am so overwhelmed I cannot respond without stuttering or freezing up. I fake being calm when I have a new range of symptoms. I fake it at the grocery store where I plot my list well in advance and go during my best time of day when there are likely to be fewer people that I have to interact with.

I get up in the morning and make sure that the first two things I do are to get dressed and make my bed. Why? Because if nothing else goes right it at least keeps me moving forward and less likely to burrow back into bed to hide from the pain. I do have pain. On a scale of 1-10 I live at around a 6, when I let myself think about it. I try to think about it as little as possible. I schedule my day with regulated therapies and a rigid schedule that keeps me moving forward. I have regular ands frequent breaks and try to hold to the advice of my rehab team by setting my schedule "in Jell-o". I try to allow flexibility where I can but with the brain trauma the more predictable my day is, the less stress it creates for me.

I fake competence in any area, doing enough to get through it. I used to excel as a student and took pride in learning for the joy of it. I loved doing research and presenting my findings to my co-workers, preparing handouts and teaching tools for those that I served and worked with. Now, I am struggling to hold on to a "B"- and it is taking everything I have to attend online classes at half-time. It takes me two to three times as long to grasp even a part of what I could learn by reading it through once. I fake humor about the pain, about being dumb, about getting through this and holding on to the lessons that I have learned. I have already done more than what anyone expected but still I "fake it".

Milestones

This week has been full of ups and downs. A dear friend, one who was diagnosed shortly after me with an atypical brain tumor, has passed away. Same primary diagnosis, same surgeon, different outcome. I'm not sure how to confront or deal with this. All I can say is that survivor guilt is real. Just two days later I watched my son pass a milestone that I would have missed out on had statistics had their way with my life.

The greatest joys and the saddest losses, both seem to center on family, on connection, on personal relationships. Hold loved ones close, take solace in quiet moments. Play one more game, read one more book, play for five more minutes with your loved ones. Say the hard things, the real things. Speak the important words and let go of the rest. Hold them close and know that life is eternal and is so worth living.

Do not quit, do not give up. Live every moment with every thing that you are and you have. If you do not love your life take the steps necessary to change it. We all have bad days, we all face hard things, that is not all we are or all we have. The moments with those we love, the quiet of our hearts, the peace we find makes it all worth it. If you do not have peace, change what you need to change about yourself so that you find peace. You know what changes need to be made, stop fearing change and move forward. The time is not endless in this life, use what you have. Connect with those you love, before you run out of time to say what needs to be said and do what needs to be done.

God is good. He loves you. If you cannot have faith in that then begin with hope. God bless.