I remember the day and time clearly. As if it was yesterday. It was the day that I realized that I was truly suffering.
Deep, heart felt, desperate, completely unfair, unsure, REAL, GROWN UP suffering.
Prior to Cataplexy, my core focus in life was about avoiding suffering. I believed and even based my faith on my ability to "overcome " my suffering, avoid it by making good choices, and figure out how to remove any pain I felt by changing my attitude, my mindset, increasing my faith or lowering my expectations.
I had some false belief that I think I still carry from time to time. One that treated happiness like an Instant Rewards Program. Some of my beliefs included:
1. If we don't sin, we won't suffer. Suffering is only caused by our own limitations. No sin equals Instant Happiness.
2. We have faith to help us avoid pain. If we have faith, we won't experience pain because our faith will cure us of all the pain we suffer. Faith equals Instant Happiness.
3. God will carry all of my pain, if I let Him. All of it. So if I have enough faith, I'll never hurt. Just let God have it. Casting my burdens on the Lord equals Instant Happiness.
4. Righteousness is shield that helps us avoid all suffering. If I am just righteous enough..... Righteousness equals Instant Happiness.
5. I can control my happiness. My happiness is up to me. God wants to make me happy, I just have to let Him. If I am not happy it is because God is trying to make me happy but I'm NOT letting Him. Stop being a stubborn nerd and let GOD make you happy, dang it!! Let God make you Happy= Instant Happiness.
But this disease was challenging those beliefs. It was bigger than anything I had ever gone through.It was bigger than my mindset, my expectations, my faith, my attitude and even bigger than my current relationship with God was able to absorb.
Maybe some of you have already experienced this before? Maybe I was immature in my thinking, but it was a real, genuine place for me and it shook me to my core. I was deeply afraid to live with this disease and deeply afraid of living with something I couldn't fix!
Here is what I feared the most:
1. I was afraid to wake up each day and see the disappointment on my children's face when I had to miss one more activity because I was too tired to go. I didn't know if I could do it.
2. I was afraid to live in a world where my husband was coming to bed each night, exhausted from all the work of taking care of the kids and ensuring that all their needs were met, while I laid in bed and took care of "just" myself.
3. I was afraid to be called disabled by anyone. I just didn't want to be called that.
4. I was afraid living with the feelings of guilt as I watched my family go to church while I sat in my pj's or laid in bed because I was too exhausted to worship with them.
5. I was afraid of living in a world where my disease was causing chaos, and there was little I could do to "fix" it.
It was humbling to know that my family and I were at the mercy of a very intense disease. An "everything changing" disease that we didn't understand. And not only did we not understand it, but every paradigm about our happiness was being challenged!
I found myself pleading with God to remove my suffering and the suffering of my family. I found myself asking Him over and over if somehow I had done enough to be healed, or if somehow my kids could be healed now, or tomorrow or very very soon?
I remember getting a blessing....again, asking God to help me figure out how to make this work. How do I fix this? What am I missing? Then I got an answer I did not expect.
"Jodi, this disease is supposed to be hard."
I was in shock. What do you mean it's supposed to be hard? It's supposed to be difficult?! Why can't God fix it and make it easy? Isn't that His job? To help me? To heal me? To reward me for my faith?
It was at that moment that I realized that God's plan of happiness was a PLAN, not a instant rewards program. You see, for you and I there is always a PLAN. There is always hope for things which are not seen, which are true.
Then came this verse to my mind. "The Son of Man has descended below them all, art thou greater than He?" ( D&C 122:8).
Even Christ, who was perfect could not avoid suffering. Deep, real, incredible suffering. And why was He willing to suffer greater than any of us will ever understand? I don't know all the answers, but I do know that He also believed in the PLAN.
And there in lies the secret to living with our suffering. There is a PLAN. There is not an instant fix. We may have moments where we feel lifted. But most of us suffering from an ongoing trial recognize that the suffering can hit us during the most unexpected moments. Moments that feel awkward, vulnerable, weird and even out of the blue. It can be discouraging, and even depressing. But for today, I am learning to live with a new paradigm about Happiness.
1. Happiness is a PLAN. If it was fast, we wouldn't need a plan. It would be called, "The great idea of happiness." But it's not. Let the PLAN work in you.
2. It's okay to cause suffering on others. It's part of being human. It's the most humbling part of being human. It's the crappiest part of being human. And the most human part of being human. When you understand that your best efforts will still cause suffering, you can be more compassionate towards other peoples best efforts that also cause you to suffer. It's weird, but it works.
3. God does not owe you anything. Wow. God doesn't owe me this chance to wake up today? No matter how imperfect I woke up today, I woke up. No one owes me that. Not even God. Thank you for giving me another day, even if it sucks. Even if I lay in bed, and accomplish very little. It's still a day that no one owed me.
4. God can't cure or stop all suffering, but He does care about us. He weeps with us. He is all knowing, which means that He knows what we are suffering with and it is sad for Him too. He does His best to help us turn it into the best that it can be for today. He never sits self righteously staring at us, thinking "Oh brother! I have a PLAN! Stop getting so worked up!" I have felt His compassion, His love, and His genuine concern for my well being. I have felt His love for each of my children and His genuine concern for their suffering. He loves them. He loves me. He loves you.
5. We don't need an Instant Reward Program. We actually don't need Instant Happiness to be okay. We don't need it in order to accomplish all the God needs us to accomplish. He can do great things thru us, even when we are suffering. Often times, I am shocked at the miracles that have happened in my life, even when I feel like I am doing nothing. He is God which means He respects the PLAN, and will do everything in His power to help us move forward.
So now when I am frustrated at the lack of Happiness in the world, the lack of balance that exist, and the ability of this fallen world to truly live up to its name, I can remember to leave the Instant Rewards Program to the grocery stores and credit cards. And for today, I will try to remember that I am alive, I can write this post, we can feel His compassion, we can feel His love, and we can patiently endure, because just for today, His Plan is enough.
No comments:
Post a Comment