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  • bayermeghan96

When Life Doesn’t Seem To Go Your Way, Stop and “Wait”

I think anyone who has lived life long enough has learned a fundamental lesson: “Life is not always fair.” From an early age, I have been uniquely positioned to realize that life is not fair and that I need to get over it to continue living the life that God wants me to live. I will not sugarcoat it and say that growing up with bilateral profound congenital sensorineural hearing loss was easy. It was probably the most brutal battle I fought in the first decade of my life. However, my family and I will be swift to point out that being deaf and only deaf (or so we thought) was not the end of the world. It was not terminal. It could only progress to a point. There was adequate treatment. In other words, it was a great blessing to have deafness as the only issue in my life.

I was not prepared for the challenges accompanying receiving the Gardasil HPV vaccine on August 24, 2012. I don’t think there is anything that could have prepared me for the realities of life after the vaccine and the present challenges I face today. I can say one thing with confidence, though. If it weren’t for the Gardasil vaccine and my deafness from birth, I absolutely would not be the young woman I am today. I will probably never understand why God made me deaf and why I have had to deal with the pain and suffering of three dozen chronic conditions for about a third of my young life. I have been put in “darned if you do” and “darned if you don’t” situations more than I care to admit. The older I get, the more fortunate I am to wake up every day in pain but so very much alive.

If the coronavirus pandemic has shown me anything, it is that tomorrow is not guaranteed. Today, I have an opportunity to live. Tomorrow, if I am fortunate enough to see it, it will take care of itself. Because the reality is, God is in control, and I am not. He has entrusted me with this body to do whatever he wants me to do in my life for His Kingdom, but only he knows when the time is up. One of the unique gifts about being a believer in Jesus Christ is that I do not have to worry about when the time is up because it is entirely out of my hands. I mean, think about it. Wouldn’t that be a ton of extra stress if you had to worry about when your time would be up? I am so glad that I have a God bigger than anything on this earth that is taking care of everything I have going on right now. It is pretty liberating!

In the last nine years, I have feared for my life. I have nearly lost my life multiple times. As many of you know, I had a catastrophic seizure that lasted approximately 32 hours at the Mayo Clinic in Rochester, Minnesota, this time five years ago while we were pursuing a diagnosis of Stiff Person Syndrome (SPS). I have been told in the past that it was “impossible” for me to have SPS. I remember that appointment with that neurologist like it was yesterday. I also remember his phone call at about 7:30 PM on a Friday the week before taking my final exams in college. It turns out that that “impossible diagnosis” based on my age and past medical history was, in fact, “possible.” Not, even so, will just positive. It happened. I have SPS and, more specifically, a pediatric-onset form of it.

I have always said, and always will say, I am appreciative that I did not fully appreciate the gravity of what I was facing because I do not know that 18 to 19-year-old Meghan could have handled such a harsh reality and all the unknowns that accompany a rare, orphan disease like SPS. You may have seen the Facebook live videos I have put up for the last 14 days and counting what I considered “The Mayo Disaster” for the longest time. Realistically, Mayo was a disaster in many ways, but in other ways, Mayo was a miracle from Heaven. The miracle from Heaven. Hence, the name “The Mayo Miracle.” It took me a long time to realize and reframe my mindset that I am in a part of who I am today will because of the events at Mayo and all of the trails leading up to Mayo.

I address this in one of my Facebook live videos. Still, I have had so many people reach out to me wondering how I manage to carry on with my life, go to school, and run “Meg’s Miracles.” Again, I’m not going to sugarcoat this living in this body is very hard. I go to school full-time, I’ve run makes miracles full-time, and well, I’m doing that. I have to make my body run 24/7/365, which is arguably one of the most complex jobs I have. I can’t fail at the job, or I won’t perform my other responsibilities. The consequences of not taking care of my body are far wider-reaching than I allow most people in my life to believe.

So, what is the big secret to what I’m doing? The reality is it isn’t a secret. I have come to accept the limitations of my body and the long-term impacts of these conditions on my life. It doesn’t always make it easier. However, it does make it a little bit more bearable. I know that things are only going to get more complicated by the very virtue of having multiple progressive diseases. Still, I like to reframe it and think about it like this: Imagine that this is a video game. In a video game, you have to pass one level to get to the next level and so on. I have passed many levels of this figurative video game that will allow me to cope with any new challenges that come with future levels of said “video game.” Now, life is not a game of any kind. Still, it is the best analogy that I can come up with to explain how I will be ready for the next challenge, for the next level, for the following symptom, for the next complication, for the subsequent therapy, or even for the next disease. Video games are always more challenging as you go along. Still, if you work through every level successfully, they aren’t nearly as hard.

People always say that God only gives his biggest battles to his strongest people. But guess what? That is not biblical at all! God only promises that no matter what we encounter in our lives, He will be there to help us walk through it. He is the same yesterday, today, and forever. In the Bible, He gives us thousands of promises, including this one.

I want to thank all of you that have supported “Meg’s Miracles.” We are over 50% of my 2021 fundraising goal of $5000 for the Johns Hopkins Stiff Person Syndrome Center. As of May 22, 2021, you have helped me raise $2650, 100% of which will be going to Johns Hopkins to research. There are still approximately 80 shirts from infant sizes to 3XL up for grabs. If we sell all these shirts, we will raise over $5000 for Johns Hopkins. We are halfway to the goal and halfway through the year. At the end of 2021, these shirts will no longer be available. There are many ways to reach me if you would prefer to make a fully tax-deductible donation. Thank you again from the bottom of my heart to everyone that has already donated! I love and appreciate you all so very much!

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