I’m not even sure if I can write this, but I’m going to try. I have always been a survivor. I think that is a trait of being FASD. Really, we have no choice. It’s either survive…or die. We have so much to deal with each and every day with just the small, every day stuff, that major things can knock us out of the park, for a while.
We are so all about routine, but sometimes life takes a turn and routine and security is not a possibility for quite a while. We spend the next days trying to find a new normal, quickly, so we can get back to a new routine.
We all have what I call mile markers in our lives. Those moments we were changed forever. …never to be the same again. It can be celebratory like a graduation or a marriage. It can also be a very traumatizing event. I have shared many times in the past about my dad dying when I was 11. That is probably THE most mile marker in my life. I was never the same after that moment and I was never able to capture any part of myself again. It was like time was divided on that day.
Just 2 weeks ago, today, my External brain, my daughter, and I were just doing routine. I had just come from the awards ceremony for my journalism awards, a few days before. We were sitting on the couch and someone who had just been to the nursing home, where my EB’s dad lived, came to the door. “Your dad is doing really bad,” they said to my EB.
We already knew he had been diagnosed with double pneumonia, the night before. Two days before that, he was fine. I mean FINE! Well, for him. J and I were checker partners. I mean, he was 84 and had alzheimers, but he could play five games with me. They were his rules and I never knew what color I was, but I went with the flow. Just to see his face light and get that cocky smirk when he beat me. He would tell the family that I was no good…lol. I loved that he was so proud of himself that he was winning. He had lost so much in life. It meant so much to me to let him have that. It was a weekly routine for me. My EB and I would go up to see her dad at least 3-5 times a week. I wanted to go see him. Go grab his favorite sweet, chocolate cream stick and coffee and we would break bread together…lol. It had become very special to me.
One thing about us FASD people, we have heart! We connect deeply with people. I mean—DEEPLY! Maybe people do not realize how much we feel, but we feel so much!! A huge problem is that we do not have the abilities to express how we feel and when trauma strikes, we shut down.
For a week, after that day, I fought shut down like I have never before. I gave a billion percent to my EB and her family. I didn’t have it, but I did it. I was constantly fighting overload, but another trait of those with FASD is we want to help and make a difference. We will do all we can to see that we can get past our disabilities to make that happen.
I loved J. J…not Jay… That was his license plate on his truck. No initial either. Just the letter J. He was an amazing man. A man of God and wisdom and for some reason even tho he had Alzheimer’s, he was able to talk about God for hours. He had been a preacher.
J had trouble remembering and talking and getting fixated on things. He had a hard time connecting with people, but he connected with me. I think we had a lot in common after his stroke and having a brain problem, like me. Different, but we could speak the same language.
I did not leave his bed for just about 2 days. Didn’t sleep for about 50 plus hours. Didn’t matter. It was J. I loved him. I watched him go downhill and I prayed God please don’t take him. Please. All the family was there. At one point, one of the most joyous times while he prepared himself to go into heaven, the room was full of family. They all sang his favorite hymns and there were plenty of tears. He had five daughters and a son. A wife and a legacy.
When he took his last breath, mine was knocked out of me. I’m just starting to breathe again. It still does not seem real to me and that he can be gone. It does not make sense to me. He had been so strong. I understand. That’s a part of life.
Still does not make it any easier.
I tried to write a few times after his death.
All I could get out was the word, Death.
I never have trouble writing.
The next week we spent in a land of confusion, with funeral plans, calling hours and the actual funeral. The part I am most grateful for, the family let me put the slideshow together. The family gave me more and more pictures to plug into a program so it would be a special presentation. I was useful. Lots of times, we get lost in all of that planning and craziness. We really don’t know what to do and that is the problem. A task like putting a slide show together where I could stay focused on one thing for hours and hours, off in my own little world, and be productive for the family. I knew I was helping and making a difference. It was something I could really do! And most importantly I could do it for J.
I loved him. Those of us that have FASD, are lost in a world where we do not understand very much and we are swamped with emotion. We are confused. We are lost in the whirlwind of all the planning around us. We literally just see confusion when everyone else knows what to do. The emotion and pain is so deep and we do not have the ability to express it. As I said with my dad’s death, just having someone put their arm around us and say let me do this with you. Let me explain this to you. Do you have any questions? Sometimes, just someone sitting with us is all we need. Sometimes just a hand on a shoulder with the question, “How are you?” is the best thing you could ever do for us.
It takes a long time for someone with FASD to recover from something like that. It take everyone a long time to get over a death in the family. But someone with FASD or autism, someone with a non-neurotypical brain, it puts the brain into shock.
I was actually proud of myself. At the funeral, my brain went into meltdown. It had been a week of constant with no sleep and there I was sitting in a room with people all around me (which I would not do on a normal day) and I was in a meltdown. I normally grab my head to stop the wires from crossing all over…lol…just a way of explaining it… I needed a release. I couldn’t take a bath. I couldn’t put my hoodie on to make it stop. I couldn’t do a thing, but leave the room. I did not want anyone to notice me at all and that I might be having a hard time, so I sat. I grabbed the sides of my chair with both hands with all of my might…and I prayed.
I wanted to give. I wanted to be there and screw my brain is all I could think about. I didn’t care what happened and how bad I physically felt, I was going to be there for my EB and her family.
We are the ones who will lie with a dying animal until it dies. We can’t give like everyone else lots of times, but we give all with our heart.
It’s easy to think we want to be a part of the wallpaper and disappear. In some ways we do, especially when we hurt deeply. The best thing you can do for someone with FASD is not let them go through a death alone. There are a lot of confused thoughts and I know I feel completely lost.
Her mom, grabbed my hand on her way to see her husband at the funeral home, for the first time. She said you are going up there with me.
That meant everything to me. We laughed when she said it with that smile she gets. I said, “Oh, are you doing this because you know I don’t want to go up there?” She said, “I’m doing it because I know both of us are having a hard time going up there.”
She included me. She met me where I was and she let me meet her where she was. Several times during calling hours she looked at me and communicated how she felt about the moment’s events with a changed facial expression. I appreciated that. Even in her pain, she thought of me and included me and thanked me, at least a dozen times and let me know how important I am to her and her family. She let me know that what I did made such a difference in her life and in J’s.
“Thank you, Ann, for all you did after he died,” she said, “but mostly, thank you for what you did before he died. He connected with you.” That meant so much to me.
Having FASD is like having a brain stop in all major traumatic events. Our brain literally stops. Sometimes, that hand, that glance, that thank you, that small job that we are giving to help, means everything in the world.
My EB took me up to the casket for one last time. I cried. It meant everything to me for her to do that. The fact that I do cry now is awesome. I was thankful and blessed that my EB let me be a part the way she did. In fact, all of her sisters embraced me.
We already feel different. We already feel left out. We already are not comprehending like anyone else in the room. We are fighting overload. We are fighting emotions that cannot be expressed.
I never knew how much I loved him until he was gone.
J—I love you! You gave me so much in life. You spoke my language. You badgered me and I badgered you until we were both laughing. We like had this understanding between the two of us that I have not had since my own dad died. It was amazing. I will forever remember your smile when you double jumped me in checkers. The day you told me that you didn’t have to cheat to beat me…lol. That just made my day. The Bible stories. Psalms was your favorite book and David was your favorite Bible character. I loved listening to you about your navy days and your childhood days. You made me a different person. Your death changed me. Knocked the wind out of me. But your life changed me even more. Thank you J for letting me in during your worst days. Letting me connect with your hurts and pains and help to calm you at times (you helped calm me too) and just share that last year of your life. It meant everything to me.