The Invisible Side Of TBI/Invisible Illness
I always start my story with.. I went to sleep as LeaAnn, and woke up a total stranger.On September 2014 I suffered a bleeding stroke, brain anyurism, and brain surgery to relive the pressure..after a routine dental surgery. I caught a blood infection in my mechanical heart valves.
My doctors told my family that If I survived..I would never be the same. I wonder if they knew just how right they were? I will never be the same.
Have you ever been in a crowded room surrounded by friends and family but felt completely and utterly alone? Its the strangest feeling. Over the summer I took a road trip to Spokane Washington to see my dad and brothers. I hadn't seen many of my family since my stroke, so I was pretty excited. We were all outside, the kids were playing, adults were drinking and laughing..and all of a sudden I felt the loneliest I have ever felt. I felt Invisible. I hope you don't mind but I invited some friends along to write this blog with me. Way to better to explain what living with an invisible is like "It ruined my Life. It made me bitter. I feel alone"
When you are in recovery after a stroke or brain injury you are constantly in therapy, learning how to walk, talk" chew, all the things our injuries made us forget how to do. I even learned how to plan a meal and cook it! "Brain injury is learning to live with a brain that sometimes feels like it belongs to someone else" But what they Don't prepare you for is your friends, husbands, wives, lovers may leave you because They can't handle it. They don't prepare you for the lonliness, the confusion, they don't tell you your family and friends won't educate themselves because..yes..They can't handle hearing how close you came to death.
"one of the hardest things to watch someone go through" TBI LIFE COACH Getting angry at someone with an injured brain for being slow, running late, or for forgetting important things is like getting mad at someone with a broken leg for not running a marathon Fast enough. "I have a story. I will not be silenced."
Unfortunately we live in a world where if you break your leg your church lines up meals for you, you get homemade soup, and lots of sympathy. After my open heart surgery all my family dropped everything to come be there, I got chicken soup and plenty of sympathy.After my brain injury.. No chicken soup, no balloons or flowers. Instead I was made fun of for not being able to drive, and my best friend..who was there for everything..accused me of faking it. "my loved one left me" "We need care and understanding now. If you can't give it. Just don't say anything that might hurt us more."
"Were people to, just because we're not the same anymore doesn't mean you can treat us like we are less than you. We can't just get over it, or sleep it off, we are not lazy, this is a part of us now. If you want to be cruel or choose to not accept us then you can go pick rocks." If storing memories is like putting away groceries, a Traumatic event is stored by shoving a bunch of stuff in a cabinet then any time the cabinet gets opened, all the stuff falls on your head.
Our whole lives have been turned upside down. We can no longer jump in our cars and meet a friend at the bar for a drink. Many of us can't drive, and if we can drive, we can no longer sit in a bar with crowds, lights and sounds overstimulate us, which often makes us nauseous and ill. We can't drive our kids to school, go sit through our kids ball games, go to concerts, many of the things we enjoyed doing are no longer possible for us. "We wish we were faking it. We wish it was all in our heads. We wish we could get over it." After my stroke I was the perfect patient, I went to therapy ready to kick butt, my family came when they could to visit. I did everything I was asked to do. But do you know what? Not once did someone just hugsl me. No one ever said, I see you suffering, I know you hurt, I know your not ok.
This blog was not written to attack anyone, it isn't meant to point fingers. I'm writing this to show you the invisible side of Brain injury and other illnesses you cannot see. If we could, we would gladly bare our broken brains so people could see the brain fof, scare, pain, confusion, and if we could we would bare our hearts..broken from those who refuse to see us.