After being diagnosed with graves and living with it for a while I noticed that it became sort of an annoyance to others. I LIVED graves. All I thought about was graves. All I read about was graves. There was only one subject I could talk about. graves. People started getting tired of it. They all said they cared. They wanted to help. They were praying. The truth was they all moved on. A few months into diagnosis graves became old news. Ones that saw me always grabbed my hand and assured me they prayed for me. And I truly believe that they were at that very moment as long as I was in their view. Others made me promise I would let them know if I needed anything but meant it only at that moment. And there was my favorite group - the advisers. They knew all about graves after all lady Bush had it and she's fine. They knew someone who knew someone who had a surgery and life was perfect after that. I should definitely have that surgery if they only could remember what kind it was.
Isolation. Cold heartless word. It became my reality. I stopped talking. I stopped showing up. I disappeared. All I could talk about was my graves and graves was sad news no one had interest in. She surely sounds depressed and needs some meds is what I heard last. I closed the door after that. I isolated everyone.
The survival phase that happened for about a year after diagnosis was easy. I was determined, strong, and hopeful. It got worse. I'll never forget the moment I entered the next phase. I was standing in the elevator, my wedding ring shining in the fluorescent light. I looked at the mirror and saw a smile. Silly newlywed. Life was good. I have a graves disease. I could hear it so loud. The smile faded. It hit me. For the first time I realized it was my new reality. My brain finally registered it. I could feel it in every cell of my body. My body went limp. My breath burned my lungs. Panic set in. The pain. The fear. The why… I fainted.
I stayed strong. Through pain, anxiety attacks, graves rage, fear, hopelessness. I prayed.
James was diagnosed with graves the same day I was. Different symptoms, the same disease. Less physical for him. Heartbreaking. His eyes lost the spark. His body lost its strength. His shoulders slouched. I once heard him cry at night. I knew right there he begged God for healing. No words. No thoughts. Just tears. Defeated men's tears. He was my rock. Patient, understanding, compassionate, loving. He let me fall apart, be broken. He just kept on loving me.
I wanted to love back. But how could I? I felt undeserving of that love. What was I doing to him? Why was I put in his life? Why was he being punished? I was deflecting. If I made him a center of my thoughts maybe I could deal with graves in a different way.
You need to grief. Excuse me? I asked my therapist. No one died what should I be grieving? You died. Eyes wide open. Excuse me? Wasn't I sitting right in front of her? You need to grief Monika before graves. Sure I do. I rolled my eyes. Why the hell did I decide to come here? I had graves. I didn't know how to deal with it. I've gained 80 pounds. My eyes look like two ping-pong balls. I can't walk... Oh my, she was right. Tears started choking me. She hesitantly spoke. Are you able to talk? Deep breath. The woman was staring at me and I wanted to punch her. I felt it come. The rage. Breathe. James isn't around to calm you down. Breathe. Anxiety. Keep breathing. Tell me what's going on. What's going on is my life is over and I can't do anything about it. It felt good to say it. Good, we can talk about it. Did she just say good? What is there to talk about? My life ended.
Isolation leads to a belief that no one cares. We close our minds and hearts. We escape. No one could get through that wall. No one was getting in. It was me and James. It was me and God.
18 months after diagnosis I was in peace. I had a routine. I quit my prescription drugs. I was in a good place with God. I knew there was a purpose. I grieved and came on another side. Weak, scared, lonely but alive. I stopped praying. I started begging God. Asked for a miracle, a shift. One positive action. A glimpse of home read heaven. And He delivered or so I thought he did. I was caring a child. The pain, the fear, the if’s and what's didn't matter any longer. I was with a child. James, my sweet James. He's eyes were once again full of joy. God delivered me from the darkness.
It won't make it. The words pierced my heart. Your baby won't make it. She listed my options. Gave me her medical advice. Told me what was done was done and tears wouldn't change it. It was time to move on. I couldn't move on. The baby was still there. Still alive. Waiting to die. And so I waited too. 5 weeks. It took 5 weeks for my baby to die. At 12 weeks the pregnancy was ended in a cold surgery room. The nurse held my hand. Wiped my tear. She prayed for me. I wanted her to stop. I didn't want the prayers. God crossed the line this time. He saw me standing at the edge of the cliff holding to disappearing hope. He heard me begging him to make me strong, offer me a change. He pushed me off the cliff. Just like that. All hope lost.
I came out from isolation. I needed help. I felt cheated. I knew this was the end for me. I didn't have anything this time. Life was never easy but there was always hope, there was always God. This time there was nothing. God has left me. I needed people. I needed support. I needed love. Human love since God’s love was gone.
Humans fail us easily. Humans failed me just like God did. They judged. They advised. They probed. They pushed. They hurt.
Some hurt for me. They didn't have words. They sat with me. Held my hand.
I'm sorry but now that you miscarried your graves is out of control. It's bad. Surgery. Another one and one more. No hope. No care.
Wake up. Eat. Work. Sleep. I had to tell myself to exist. The world felt like hell. God why did you leave me?
I heard Him on my way to work. Clear voice. Clear words. One task. I followed. Hesitantly. He took it away from you so you would change your direction. Excuse me? The baby. What? I'm sorry I'm not sure what this was about. Of course you aren't you don't know me. I didn't say that. Instead I smiled at her. I didn't know her. A kind stranger God used to speak to me. And once again the following day. The same words.
When diagnosed with graves I thought my life was over. I knew the disease was going to shorten my life.10 years on average. That's a solid statistical data. I was angry thinking I was loosing 10 years to graves. Until I realized I wasn't. Everyone's days are counted by God. He knows our last day. He knows my. He may use graves to bring that day closer or he may choose a bus to hit me. Graves is not shortening my life. My life will be as long as God planned it. There will be no what if’s and regrets when that day comes. None. Because I know that my life was designed to as long as it needs to be for my soul to accomplish its earthy goals.
Graves will lower quality of my life. I won't be able to... What exactly does that mean? My life is different but it's not worse in any way. It's just different.
Peace. My heart is at peace. My heart is with God. My grieving process is complete. The me that died is now reborn. Not any stronger or wiser just different.
If I could go back in time and change anything I wouldn’t. I would choose to have graves. I would choose for my young soul to die and to be reborn the way it did. Mature, wiser, more fulfilled.