When I was seventeen and a senior in high school, my health took a sudden, steep, and inexplicable nose dive. Until then, I was an athlete, running five miles every day in the off-seasons, 4.0 student, and involved in a plethora of varied extra-curriculars. After too many ambulance rides and rounds of testing, my mom and I sat down with the director of pulmonology at the largest hospital in the area, for another one of our many appointments. The director had heard about my “fascinating” case and had taken me on personally. He told me that while he had absolutely no idea what was going on, there was a pretty good chance it was going to kill me. Naturally, my first question was, “How long do I have?” He replied, “I have no idea, it could likely be any day now.” Then he drew a circle around the nearest hospital to me and firmly told me I was never to go outside that circle. I needed to always be within a few minutes of the rescue medications required to open my bizarrely unresponsive airways that were only available in a hospital setting. EMTs always tried hard but couldn’t get my airways to open up with the supplies they had available. I can’t even count how many times I’ve lost consciousness from suffocation after my airways spontaneously closed off. Thankfully, I’ve always woken up.
At the time, I didn’t tell anyone how serious things were. I just wanted to have as normal a life as possible, however long that might be. I wanted to laugh with my friends, not feel the heavy weight ever-present when people think you’re about to die, especially as a teenager. It was a deeply reflective time in my life. Paradoxically, it was one of the periods of greatest peace in my life. I had no idea if I would die that very day, live to see my high school graduation, or live into my 90’s, but I knew completely and core-deep that no matter the outcome, everything was going to be okay. I was at peace with dying. I was at peace with living. I could feel God’s love and the companionship of the Spirit every day. While I had to go through something heavy and terrifying, I knew I wasn’t going through it alone. I could feel Heaven was always close by, and that gave me strength and comfort.
At the time, I didn’t tell anyone how serious things were. I just wanted to have as normal a life as possible, however long that might be. I wanted to laugh with my friends, not feel the heavy weight ever-present when people think you’re about to die, especially as a teenager. It was a deeply reflective time in my life. Paradoxically, it was one of the periods of greatest peace in my life. I had no idea if I would die that very day, live to see my high school graduation, or live into my 90’s, but I knew completely and core-deep that no matter the outcome, everything was going to be okay. I was at peace with dying. I was at peace with living. I could feel God’s love and the companionship of the Spirit every day. While I had to go through something heavy and terrifying, I knew I wasn’t going through it alone. I could feel Heaven was always close by, and that gave me strength and comfort.
Twelve years of continued searching later, we’re just starting to find answers. Some of those answers have treatments, others don’t. Along the journey, I just kept believing we’d find the answer, its treatment or cure, and I’d go back to the physical health and well-being of my youth. I looked forward to enjoying all the activities I once did, especially as a family and with my young children, as a way of having hope through the especially low times. Reframing a life is difficult and slow work, with a lot of two steps forward, one step back. It’s mentally and emotionally, very messy work. Having ALL the conditions I do simultaneously is extraordinarily rare, my specialists only know of two other cases in their collective careers, and I’m the only one of the three to have had children, which changes the body and its considerations. So pretty much everything is theoretical and uncharted territory. With so many unknowns and practically no precedence, no one can give me a prognosis or any idea of what level of function or quality of life is realistic to hope for. It’s all “wait and see”. One thing all the specialists agree on is that I will never have the physical ability and health I once had. That’s the hardest pill I’ve ever had to swallow.
I’m forever grateful for the miracle of getting in with my now lead specialist this past fall. His wife has two of the dozen rare conditions I have, and they had to go through a long medical journey themselves. You don’t get that level of dedication and care any other way. He’s my biggest medical supporter of hope. He said the post-neurosurgery rehab journey will be arduous and years-long, but he believes he can improve my level of function and quality of life noticeably, hopefully, significantly. Among many things, it will include the second time in my adult life of having to learn how to walk again. Amidst the fog of uncertainty and the unknown, Tanner and I choose to hope for the best possible outcome. For now, my doctor's number one priority is just trying to get me to stay medically stable enough to get cleared for neurosurgery in May. We’re holding onto shipwreck debris in the middle of the ocean, just clinging on through the night until the neurosurgery rescue boat comes in the morning of May.
It’s hard to be so debilitated, especially in this stage of life. Especially with littles. It’s hard to see everyone else living life like I planned to and long for. Just ordinary, day-to-day life. The other night I was sharing my heavy heart with Heavenly Father about this. He helped me remember so many strong, amazing people from the scriptures who endured extremely difficult circumstances as a young adult - and then went on to do great things. Joseph was sold as a slave into Egypt by his own brothers, then wrongfully imprisoned for years before he went on to become Pharaoh's right-hand man and was the reason Egypt had a storehouse for their seven years of drought, saving countless. I imagine while he was in the early years of slavery and imprisonment, he was feeling pretty lowly, with no hope or expectation of life getting much better, let alone becoming Egypt’s #2 and saving so many lives. Ruth lost her young husband while living in a foreign land away from her family and culture and had to pick scraps left behind in fields for food to eat. She went on to become a predecessor of David and even a part of Christ’s earthly lineage. How many missionaries throughout the scriptures were tortured or imprisoned simply for being a missionary? Joseph Smith, while striving to only do God’s will, faced adversity after adversity. He worked hard and attained very little by way of the world, often living hand-to-mouth and by the great kindness of others. He and Emma lost child after child after child. He was tarred and feathered by mobs. Yet he persisted and his efforts have changed countless lives, mine included. The list goes on.
Sometimes good people go through exceptionally difficult seasons. Sometimes those seasons are short, other times lengthy, still more last a lifetime. But you know what? It wasn’t in spite of their trials that they were able to do good, help others, and make a difference, it was because of their adversities.
It’s hard to see the good that may come at some future moment while you’re just trying to tread water and cling on for dear life, praying help and relief come in time. It’s even harder while watching others pass by on warm comfy boats, totally unaware, seemingly without a care in the world. But I think maybe everyone will feel like that at least some time in their lives. It’s just the rescue boat comes more quickly for most. The best part about every boat? They’re all equipped with a life preserver. We were made to help those around us, to buoy up the weary and struggling. Most of the time, when help comes, it comes through others reaching out a helping hand and pulling us up. I have seen a great number of prayers answered through good people who simply see a need and meet it because that’s just who they are.
The truth is none of us knows how long we have earth-side, or with any given physical ability, medical trials or not. All we can do is try to enjoy what we have while we have it. And USE IT. Don’t wait. Life will always be crazy and busy. Sit down and make a list of what matters to you most in life. Think about what you might regret at the end, to help clarify the list. Then, with a daily calendar make a new routine by first scheduling time for what matters most and what is necessary. Fill in the rest until time runs out and then let everything else that didn’t make the cut, as good as they may be, fall from your life. The world will go on, it will be okay. Don’t glorify being busy as a status symbol. Make time for family and loved ones first. Be careful not to be so busy working or helping the community and world, you don’t have time to truly be there and available for your own family. It happens all too often.
Life is crazy and we’ll all go through rough seas. I’m grateful for the life preservers and rescue boats of others along the way. I’m especially grateful to know that while I may have to tread water for a while, there will never be a second I have to go through it alone. I know God lives. I know He loves His children and knows them individually and personally. He comes to our aid and helps us through every step of this mortal journey, sunshine or storm.
Much has changed in the last twelve years, but some things remain the same. I know that no matter what lies ahead, in the end, everything will be okay. No matter how tumultuous the storm, a way will always be provided through. (Because when it comes to the storms of life, the only way to reach the other side is straight through the thick of it.) God will send others to be His hands. I look forward to the day when I will be able to help others because of the experiences I’ve had. I seek out opportunities to help now, but I look forward to when I have an increased capacity to do more, both for others waging the same storm, and more, for my children and family. The future may not look as I once imagined, but there is always something to look forward to. No matter how long and dark the night, morning will come. Always.
