Scroll on By.....

This is a note from me...  Michelle. 

I have been criticized a lot over the last few years for being negative...  or "draining" in my updates or posts on Facebook.  I've been told I "share too much".  I had a church member tell me that I was "depressing" and my posts were not good for her spiritual health.  I even had someone tell me that people think I "make it up" because there's no way this much could really be going on.  Just this morning, a family member messaged me that he was deleting and blocking me because it's "depressing".

Michael lives with post-brain injury deficits and severe dysautonomia.  More days than not Michael is unable to leave the house.  He can't drive to the grocery store and get the things we may need because he forgets how to get there or forgets the few things he needs.  He has to have someone with him at every doctor's appointment because by the time he gets home he has no recollection of what was discussed and by the next day he doesn't even remember being there.  He can't take the kids to any of their appointments for this reason as well....  so I do.  He has to use a very specific pill box and things have to remain in order on the medicine shelf or it will throw him off and confuse him, causing missed meds or overdosed meds.  Often Michael forgets what happened last fall leading to the reason he is on a feeding tube and will eat because he wants to...  leaving him coughing for hours and then saying "oh yeah.... now I remember".  More days than not he is in a dark room because of the debilitating headaches and dizzy spells to keep them at least "tolerable" so that he doesn't go into a seizure.  Kids have came home with a friend, introduced him, and 3 hours later he ges upset because no one told him we had company in the house.  We put EVERYTHING on a paper calendar including church days, my work days, when people are coming, when to refill meds, etc. because he can't keep track of things and forgets that something as simple as church that we go to every single week.  There are days where the brain just has had too much and he sleeps for HOURS.  TBI sucks every bit of emotion out of it's victims, leaving Michael apathetic to pretty much any situation around him.  Holding a conversation with him is hard because he will forget the topic, what he's going to say, or just not be able to get his words out.  When we are out in public or at church he puts on fake face so that people won't worry about him or think him any different.  But that exhausts him and when we get back home he will sleep for hours.  He tells me he feels "useless" because he can't work to bring in the extra income we need to survive, can't go and do a huge grocery shopping trip for me so that I can rest on a Saturday, and most recently verbalized feeling useless because we had to ask family to fly in to help after Paige's upcoming surgery because he can't lift her to help take care of her.  We don't go out to dinner.  We don't go to events.  We don't have an intimate relationship.  We don't have a "normal" marriage or family life.  Sure, it's not a cancer diagnosis.  But TBI and all that comes with it is a lifelong, debilitating, progressive disease that changes our life every single day in different ways.  

So, my response to those of you who have criticized me is this...  If a simple Facebook post or a family update makes you feel this way about me...  good.  You are getting a tiny little 10 second glimpse into our every day all day life.  Be thankful that you can click "delete", "block", or scroll on by.  I can't.  WE can't.  We have to face it every single day.