I have survivors guilt. BIG TIME.
In 2011 my husband saved my life. He paid attention! He knew I was crashing, and constantly being hospitalized for bleeding episodes. He is not a Hematologist, but he is very smart, summa top class of his class smart. He worked the problem, and I am alive today to tell the story.
He loved me enough to go to any measures necessary to save my life. He rushed me to the hospital, he begged his partners, and about five different specialty doctors to evaluate me.
The result? A diagnosis. One that was long overdue. He didn’t know what it had done to me neurologically.
As of today, it has been 8 years, and three months. I have seen many specialists, a new hematologist at VCU, and a fantastic psychologist, that has helped my brain heal. I have IV medication (Von Willebrand serum) on hand if I need it, and medication for the constant bruising, and I am better. I kicked opioids in April of 2018. Although they gave me some the evening of my Brother’s death (IV) because I was in the hospital, and had to return the next day. I did not take a prescription home, and I will never ever take them again no matter how much pain I’m in. Those drugs make everything worse. Furthermore, they were making me stupid! We have to get these drugs off the streets, and Doctor’s really need to evaluate how long to give them after an episode.
What I do know, is when my Brother Corey passed, I thought it was my fault. I had the records that he gave me, and I also had the records that the Hepatologist had given my husband with my Brother’s consent. That was in May 2018. He died on September 9, 2018.
Why? My sweet Sister and my parents are convinced that it was his time. God had called upon him as their Angel, and it was simply his time. I want to believe this simple analogy. It’s easier to accept. I’m listening to the audible Bible and halfway through. John 11 gives the most comfort. I just won’t lie. Given this history in medicine, and now this new learning in religion, I’m still 50/50. Could I have done more to save him as was done to save me?
My husband says NO. He says one is truly hereditary, and medical (me) and one is bad luck, or maybe lifestyle. That still doesn’t make sense because he held the same job for 18 years! he was so beloved by everyone he met. He still hasn’t been replaced at his former job he was so smart. I am a Mom had almost always had the luxury of being my own boss. Some really successful endeavors, and some just ok. I just knew that I had no choice but to survive. That’s difficult to do when you’re exhausted after 13 surgeries and 11 blood transfusions. I will never forget my husband rushing me to the hospital the last time with a hemoglobin of 4, begging his Partners to help saying I was crashing fast. So many Doctor’s and nurses rushing around, and my husband was not about it let me die. When things looked like I wasn’t going to make it, my husband called my parents. They rushed to the hospital, and at this point, I was about to just give up. I was so tired, and I was ready to call it quits. At that moment, I saw my Mom rush into the room. I felt so guilty that I had always worried them so with so much medical trauma, so many hospital stays. I remember looking up at my Mom and thinking I have to fight. I have to survive. I can’t quit. Mostly because she probably would have killed me herself if I didn’t fight for myself! Suddenly, I could almost feel my arms and legs again, I was turning the corner to hold on, more blood was on its way and my surgeon was racing to the hospital for another emergency surgery to try and stop the bleeding.
It’s difficult to comprehend. It’s hard to know that my Brother was such a better person than me, kinder, gentler than me but due to economic circumstances I survived? So, guilt? You think? Yep. I have been upsetting my family. Not on purpose, but they really believe it was his time to go, and I need to just give it up to God. They believe God needed another angel. So, because I love them so much, I am going to do just that. I’m still going to give back to charities, pay it forward, and start awkward conversations that are for the greater good, but I won’t make it personal.
From here until eternity. I am going to believe in my family, that loves me. A sister that makes me laugh at loud, a niece that fills my heart with joy, and my parents who need peace. They deserve some peace. This is my last post about this.
The Mask of the Doctors wife