It Figures

You know how people talk about how hard it is to live and function on disability? Yeah, they are not kidding. Here are some things I have learned so far on this little journey of mine.

1. If you look well, you probably don't feel well. I am more likely to put on concealer and makeup on days when I feel and look like garbage. I use a lot of concealer to cover circles under my eyes, blush to add some color to my cheeks, and lots of bronzer. (You can thank my makeup fetish pre-injury for my stores of makeup; lets face it, I couldn't buy it all now.) Please don't punish people for not "looking" disabled.
2. Whatever is hardest for you is the next thing you need to do. Finding the right kind of help is not easy, navigating the phone trees and gate keepers is even harder. Making things hardest for the most vulnerable in our population is just awful. Why must it be so hard to find help? I cant tell you the level of frustration I experience when, despite knowing my issues I am told by someone offering assistance "Well, its really very obvious." No, no its not. Not to me. nothing is obvious to me and to speak to me in such a way simply tells me that you didn't bother to read in my file how it is best to ensure that I need vital information. You forgot about me as an individual and started counting me as a number.
   
3. Prove who you are. Speaking is still hard, remembering basic information and numbers is even harder. Every time I contact any support services I must first prove who I am by reviewing full name, birthdate, address, phone number listed on the account which could be any of our family phones, and so much other information made up of a collection of random life milestones. I have to prewrite my questions so that by the time I am done trying to prove who I am, I can ask and get the right answers to my questions.
4. A person can get lost standing in an open room. This one is way too easy for me to accomplish. I happened for me the other day. I can be standing in one place, know exactly where I am, but if the environment changes, such as adding groups of people, I am lost. Too much to look at. Too much going on. Going out with loved ones is not just about the energy it takes to spend time with someone you care for, its about knowingly putting yourself in a position to be visually and auditorially assaulted. I get the extra bonus of trying to think around these things to attempt to focus in a meaningful way on the other person.
5. I have magical skills of becoming tired just doing nothing. It takes a special talent for becoming overwhelmed to fatigue not doing anything. Only, that's not really true. The problem is that my brain is really trying to do everything. With no filter to ignore some of the distractions out in the world, I am trying to absorb every sight, sound, and stimulus at the same level of intensity. I have no filter. I find I am not surprised when kids get confused, because I do. What we expect of new little people is really unfair to them.
   
6. Even if you walked the same path, you can never fully appreciate someone's journey. Meningioma is the most common form of brain tumor. Not all tumors are created equally, thank goodness! Even if two people share the same type of brain tumor the size, location, age, and impact vary greatly from patient to patient. Listening with empathy to what the other person is telling you becomes vital. Showing concern for who they are and the needs they express is the only way we can really learn and show another person that we care. Additionally accept that if the other person says you don't really understand, guess what? You don't. You can't and neither can I. So set aside your own ego and listen with your heart.

I have been so incredibly blessed with the family and friends that I have. What hope and what joy they bring into my life. I know that God lives. I know He is aware of each of us and the journey we are undertaking. I know that He possesses perfect empathy and love. God bless and keep you in your trials.