Jodi Orgill Brown, a Utah working mom of four, never considered that her headaches, dizzy spells and the ringing in her ears were all related, but after becoming “almost non-functional” and convincing the doctors to give her an MRI, Brown was chased down by the radiology technician. A large tumor was crushing her brainstem.
Brown, who led a very busy lifestyle as a wife, mother, volunteer and worker in professional fundraising, was only 33 at the time of her diagnosis eight years ago. As a member of The Church of Jesus Christ of Latter-day Saints, Brown, a native of Northern Virginia, said that her family and her faith in Jesus Christ helped her pull through the health challenges that would leave her paralyzed and fighting for her life.
Brown’s tumor extended from her right eye canal to the end of the bone, and then wrapped around her brain stem. It was originally deemed inoperable.
After exploring countless options and being denied by almost every doctor in the region, the Browns finally found a doctor to operate.
“The plan was one surgery,” she said, “to remove the tumor, and we were planning for five, six days in recovery.”
That plan, however, quickly changed. “What ended up proceeding was, at that time in the hospital, I had a series of three different craniotomies (brain surgeries), ended up spending 35 days in and out of neurocritical care, and I ended up with facial paralysis, a cerebral spinal fluid leak, where the fluid that protects your brain and goes up and down your spine was actually physically leaking out of my nose and down the back of my throat and that caused an infection in the brain.”
The complications compounded each other, and on June 7, 2009, Brown found herself lying in a hospital bed, dying. As she was saying goodbye to her family, she thought about how her husband wouldn’t have a wife, how her four kids wouldn’t have a mom and it was this stream of thoughts that made her fight harder. Miraculously, she made it through the night.
After several weeks in the hospital, more surgeries, rehabilitation, fasting and prayer, Brown was able to go home, still very weak.
Of all the complications and side effects from the surgeries, the facial paralysis was the most noticeable. She had paralysis on the entire right side of her face. She had to wear an eyepatch. She couldn’t move her eye, couldn’t blink, had slurred speech and couldn’t close the right side of her mouth, making eating difficult. Her 2-year-old son was scared of her. Her skin and her eye socket weren’t holding her eye in, meaning more surgeries, including the addition of a mechanical spring to her eyelid to help her close her eye.
Brown recalled a time when she was eating with her kids in a restaurant and noticed a few patrons across the restaurant pointing at her, laughing and imitating the way the food sometimes fell from the paralyzed half of her mouth.
She immediately left. “We got out to the car, and I sat in the car, and I hit my steering wheel and I started crying, and then I realized the guys were still watching me, from inside the restaurant they were looking through the window and they were still pointing and laughing,” said Brown. “To have something so visually physical, that people could see, that made them change how they thought about me, it was a very hard thing."
She wondered how people could not see past her body, couldn’t see that she was not just the same person, but a better, stronger one on the inside. “To have people judge me because of that was far more emotional than I anticipated. And that grieving had to really come, and the acceptance came one day at a time.”
Experiences like the one in the restaurant and other emotional challenges led Brown to her faith for help with her grief. She said she had to remember and understand “that not only does God love me the way that I am, but that this is not who I am, this is just part of the physical body that we wear through mortality.”
Brown’s faith was a big factor in helping her pull through, but she didn’t always have perfect days. “I’m a very faithful, prayerful, religious person,” she said, “and yet there were a period of weeks when I stopped praying altogether, not because I didn’t think God was there, but because I didn’t know what the heck to say to this God when all of this was falling down around me.”
Brown called herself a “very organized, type-A personality” who liked to be in control, so when she came home from the hospital and couldn’t do the things she could do previously, she had to realize that God still loved her, even if she looked and acted differently.
“I really associated a lot of my self-worth with things that I was able to do,” Brown said. “And it helped me understand that even if there was a time when I couldn’t even walk much less get up and do something for someone else, I could still contribute and I was still of worth. Because I am still a child of God and I do still have a purpose, and the Lord knows what that purpose is, I just had to come to a point where I knew what that purpose was too.”
The thing that helped Brown crawl out of her misery and confusion over God’s will was noticing the good things and the miracles God had blessed her with. Brown started noticing the people around her who were helping her. She also noticed those who needed her, like her husband and kids. “And that gave me great strength and purpose and hope," said Brown. "That even though I couldn’t physically do all of the things that I could do before, that I was still me, and I could still be there for him and for them. And a new normal would eventually come, even though that took a long time to find.”
Brown had no idea at age 33 what her new normal would look like now, but she said that if she had not gone through the terrible things, she wouldn’t have been able to see the miracles and opportunities she has.
“I think that’s one of the amazing things,” said Brown, “is that God has things in store for us that we can’t imagine until we’re willing to embrace his will, and then as we really come to act and accept what he’s got, then doors open and the windows of heaven open and the flood comes in and the blessings just multiply.”
Brown now owns her own business where she speaks to companies about finding their purpose, and she also does trainings for nurses about the importance of touch. She is a motivational speaker, and she has authored a book, “The Sun Still Shines,” which has become an Amazon best-seller.