It was June 9th, my sister’s birthday. I sat across from her at lunch, beaming like a proud mama bear. My sister beamed back. For the first time in years, I could see the woman behind the smile… not her pain.
My sister has Trigeminal Neuralgia, the “suicide disease.” Once diagnosed with this cruel, debilitating disease, the chances of the patient feeling there is no other way out but to commit suicide are extremely high. However, it’s not the actual disease that kills you, it’s the pain. A pain that is beyond the reach of the most extreme drugs. A pain that is so unbearable that it leaves zero chance for a normal life. A pain that would cause my sister to scratch her face, dig her fingers into the sides of her mouth, jabbing and rubbing as hard as she could as if she was trying to extract the pain. A pain that is so excruciating that it led my sister to not just one, but two brain surgeries.
Three months prior to our beautiful birthday lunch, my sister had undergone her second brain surgery. The journey to that brave choice, however, was riddled with complication, heartbreak, disappointment, confusion, and you guessed it… pain.
She had been to so many doctors and so many hospitals. There were some who honestly tried to help her. Other doctors, when they couldn’t figure out how to make my sister better, would simply tell her she didn’t have Trigeminal Neuralgia. Can you even imagine how devastating that would be to hear? That the pain that was destroying your life didn’t in fact exist. She began to think that maybe she was crazy. Maybe the doctors were right. Except… the pain. The pain would always pull her into the present and scream that there was something clearly very wrong.
Those of us closest to my sister spent years trying to help her. We have gone on so many wild goose chases, leaving us with a feeling of profound helplessness. Her amazing husband – and when I say amazing, I mean amazing – would do anything for my sister. ANYTHING. His unconditional love and dedication to her happiness and quality of life is humbling to see. My parents have been by her side through it all. No matter the age, when your child is in pain, YOU are in pain. When your child is in unending pain… YOU are in unending pain. My brother and I, our spouses, extended family, her loyal friends, we all have tried to make things better any way we can. I used to bargain with God, “Dear God, please take Jules pain away. I don’t have to have a biological baby, just please take her pain away,” I know, I have a flare for the dramatic. But, I meant it.
So, when my sister said she met a doctor that wanted to help her, that genuinely cared, that treated her like a person not a number, that believed her, my first reaction was tears of joy!! God has finally answered our prayers! YES!!! My second reaction was fear. What if she dies? What if it doesn’t “work” again? What if she can’t handle it? What if I lose my sister forever? Is it possible that after all the prayers, all the doctors, all the disappointments that someone could actually help her?
Faith is a funny thing, you know. I have carried hope for her and promised her so many times that I would never give up on her, no matter what. I’ve sat by her side during horrific episodes where she would plead with me to leave the room so that I didn’t have to witness her pain. I would calmly say, “This will pass, I love you, I am never giving up on you.” We have had countless conversations where I explain how much she means to all of us, countless prayers to God, Jesus, angels, ALL OF THEM! And yet, here we were, on the precipice of an answered prayer and I just felt so much fear. My sister’s faith, however, never faltered. When her pain got worse, her faith got stronger. I know it has been the abundant well from which she drew upon to survive. When the meds stopped working, when the attacks became unbearable, her faith pulled her through time and time again. I was grateful for her unwavering faith, because I knew without it…without it…
Well, I don’t even want to think about it what would happen… without it.
The new doctor’s theory was honest and straightforward. He made no bones about the risks that went along with this kind of surgery, especially the second time. But here’s the real kicker… he was also a man of faith. He actually said he was led by God and that the surgery was in God’s hands. We are a family of faith, but the last thing you want to hear from your brain surgeon is, “It’s in God’s hands.” Who is this Koo Koo Loo we thought? No. We want to know it’s in YOUR hands Doc, let’s not pass the buck to God. We were all nervous, but my sister wasn’t. She was as calm and certain as ever.
Then, my friend Nikki encouraged me to think about it a different way. She reminded me that all the doctors before thought THEY were God, and they did nothing for her. NOTHING. Nikki was right. My sister’s first surgery was done by the very best of the best (with a giant ego to match), and we were all certain that she would help. But, she did nothing. Absolutely NOTHING. Maybe this new God doctor – who was also extremely skilled by the way – could help her.
So, we went with GOD!
The day came, our whole family was in the waiting room for this 3-hour surgery. Hour one went by, hour two…tick tock…hour three, ok he must be helping her! Hour 6… 8… 12 hours later we were able to see her. This doctor worked on my sister for 12 hours. The two of them (and God) made it through 12 hours of brain surgery.
There is so much to say about the weeks following. She had her share of complications, including life threatening blood clots that put her back in the hospital. She developed a few temporary side effects like Bell’s Palsy, that will eventually go way. She has had some really painful eye issues due to the Bells Palsy, also predicted to go way.
However, the surgery was a success! As I write this, tears of joy stream down my face. It’s only been 4 months and she has been through the ringer. But, the doctor did indeed get the right nerve. I honestly think most doctors would have said it was too dangerous and stop. But as he says, it was his faith and my sisters desire to live that kept him going. He was the answer to our prayer, and while she still has a road ahead of her, Jules is getting better and better as the Trigeminal pain continues to dwindle.
As I sat next to my sister on her birthday and saw her 1000-watt big-hearted smile, I remembered what she had said to me in the raw days after surgery, “Jenny, I just don’t want to fake it anymore. I’m so exhausted. I want to smile and really be smiling.” That is all I could think about that day. She was smiling and really smiling with her whole soul. So much has happened to my family the past few months – I will save that for another blog. However, we cannot lose sight of the miracle that happened before our eyes. Without the extreme TN pain, my sister and I have had so many deep and meaningful conversations in the past four months. She has been able to become more and more present in her own life. She is indeed a warrior, a woman of super human strength. She often jokes that I am the older sister. Older soul perhaps. But, it is HER strength, HER leadership, her FAITH that has gotten all of us through this.
Dr. Gahly was her surgeon this second time around. Click here to learn more about him.
Beautiful Jen. I am so happy for your sister and your family. And what an important time to be reminded to keep fighting and notngove up hope.