The Secret to Living Beyond What If
“I can’t do that. I have bad balance because my mom does.” I stated, so matter-of-fact at the invitation to try on my new playground friend’s Rollerblades.
“What does that mean?” They asked, tilting their head and staring blankly at me.
“I just have bad balance. You know how sometimes your mom has brown hair, so you do? I think it is like that.” I replied as they walked away to play with someone else. I stood there confused. Where did that come from? I couldn’t remember if someone had told me that or if it was my own idea. But I thought it must be true, because why would I think that it if wasn’t?
I remember the day those words first came out of my mouth so clearly. I think I felt, in that moment, the shift in my heart as seeds were planted. Those lies twisted from the truth and the roots started off so very shallow. But over time – over years and years of believing them to be true and claiming their identity over my life, those roots grew so deeply. You see, I’ve been dreading this year for my whole entire life. I’ve been living in fear of my 23rd birthday for as long as I can remember.
My mother is an incredibly patient, strong, and joyful beacon. I love her, and I hope one day to grow up to be even a fraction of the woman of God she is. I adore her and admire her. She is beautiful, brilliant, creative, compassionate, resilient, courageous, discerning and loving. She loves the Lord fiercely and speaks life with such authority and such confidence in His goodness. She is remarkable, truly.
My mom was diagnosed with Spinocerebellar Ataxia several years ago. It is similar to Multiple Sclerosis regarding some of the symptoms and is in many ways still being researched and learned about. It is not fatal and is mainly just an inconvenience for her. Basically, it affects one’s motor skills (balance, handwriting, coordination, etc.) and can sometimes affect memory. She found out several years ago that eating a low carbohydrate diet greatly reduces these side effects, and with the help of a weighted vest through Balance Wear that uses counterweights, she is doing phenomenally.
My mom first began to notice symptoms of Spinocerebellar Ataxia when she was 23 years old, the year that I was born. She told me that one day she was walking down the slanted hill of a friend’s backyard and felt she couldn’t balance unless she had someone’s hand to hold and her friend told her that she thought she should see a doctor. The process began.
My mom’s life is vibrant and abundant, and I have so admired her strength and perseverance as she has walked through this journey. When she was diagnosed, it took several doctors and several tests. It was a long process for her that I knew took a lot of bravery, a lot of patience, and a lot of trusting in the Lord.
I love her heart. I love her perspective. I love the ways in which she has used this as an offering to God of proclaiming His goodness in all things and using it as a mantle to reach out to others and be a light in every avenue. My mom is a warrior. My mother is a blessing to all who know her because of how she radiates the heart of God. No one has a perfect life and we live in a fallen world. We all face hardships, difficulties, and obstacles. It is not about what we face but about
It is not about what we face but about how we choose to face it, and my mother is a strong tower. Anyone can complain about anything. Anyone can choose to have a mentality of being overcome by anything. But she has chosen to see His goodness, His blessing, and His promise in it all. She believes, I believe, and my family believes that one day she is going to be fully healed. We know that the Lord is more than able to bring that to fruition. But because she is still waiting for this promise to be fulfilled to her, she and all of us believe that He is using this for the good. And because of how He has allowed this to shape and sharpen her and has made her so much like Him, she is greatly admired and such a light. My mother is truly remarkable.
My mother is truly remarkable.
But somewhere along this journey, a divide set in for me as her daughter. I’ve always looked up to her, been encouraged by her, and seen the life that has overflowed through this. But somewhere in there, I gathered details and hints and lies and fears… and I began to let it sink it. Take root. Take hold. I recall hearing here and there that some types of Ataxia are genetic and have a 50% chance of passing on to children. I remember the fear and the uncertainty as we waited for test results for her diagnosis or waited for more research and we were unsure of what was going on. I remember hearing about my mom going through the pain of spinal taps and doctors saying they I remember the fear and the uncertainty as we waited for test results for her diagnosis or waited for more research and we were unsure of what was going on. I remember hearing about my mom going through the pain of spinal taps and doctors saying they
I remember hearing about my mom going through the pain of spinal taps and doctors saying they I remember the fear and the uncertainty as we waited for test results for her diagnosis or waited for more research and we were unsure of what was going on. I remember hearing about my mom going through the pain of spinal taps and doctors saying they didn’t know and wondering what was to come. I can so vividly remember those moments when answers trickled in. Those moments when relief swelled in her and in my dad and in us and we began to understand that this wasn’t fatal and that things were going to be okay. I remember when dust began to settle and God began to do such a work in my family. I remember when He began to shed light on truly using all things.
I can so vividly remember those moments when answers trickled in. Those moments when relief swelled in her and in my dad and in us and we began to understand that this wasn’t fatal and that things were going to be okay. I remember when dust began to settle and God began to do such a work in my family. I remember when He began to shed light on truly using all things for the good of those who love Him. I began to see her walk in the strength and the courage of knowing she was SO much more than any diagnosis but that her diagnosis could be a platform, along with many other gifts and facets of her heart, to bring glory to God.
But somewhere underneath the relief and the moving forward, roots of fear and uncertainty still took hold in me. Her doctors were able to identify the type of Ataxia she had and the progression of it and were so encouraging in where she was at and what was ahead. But so much of the world of Ataxia is still so unknown. But what I did know was that my mom had two children – my brother and I. What I did know was that my brother was always so athletic and so coordinated. He was always so adventurous and picked up ice skating or rollerblading or skateboarding without ever thinking about it. Somewhere within the mind of a little girl, I thought it absolute that 1 out of 2 children of parents with Ataxia will have it. And because my brother was skateboarding circles around me, I thought that
Somewhere within the mind of a little girl, I thought it absolute that 1 out of 2 children of parents with Ataxia will have it. And because my brother was skateboarding circles around me, I thought that I must have the Ataxia of my mother.
“You know how sometimes your mom has brown hair, so you do? I think it is like that.”
It was years before I admitted that this was the future I had adopted for myself. I refused to try to Rollerblades or do monkey bars or to put myself in situations where I would have to rely on my balance or memory. I never even tried. I assumed. I took on this identity – this mental crutch. I chose not to even try because I felt most assuredly that I would fail. Infants aren’t born walking and Olympic gymnasts don’t just find one day that they had these sets of skills – I never even attempted to try to learn balance or coordination as a child because I thought I couldn’t do it and saw other kids excel. I never made the connection that they must have learned to do these things at one point. I never gave myself the chance to develop those abilities. I chose to live in doubt and assumed that “no” was the safest answer to any invitation so that I wouldn’t embarrass myself. But somewhere along this assumption, I also chose to believe that because there are so many different types of Ataxia and different levels of severity that I needed to brace for the worst.
I never made the connection that they must have learned to do these things at one point. I never gave myself the chance to develop those abilities. I chose to live in doubt and assumed that “no” was the safest answer to any invitation so that I wouldn’t embarrass myself. But somewhere along this assumption, I also chose to believe that because there are so many different types of Ataxia and different levels of severity that I needed to brace for the worst.
And these roots grew deeper.
I’ve always been afraid of turning 23. I have always felt such a self-induced pressure to accomplish everything I wanted before I was 23. When I was 19, through so many different confirmations, I felt the Lord direct me to be a nurse. Despite my fears, I felt I had just enough time to make this happen. I worked full-time, went to school full-time, year-round, and maintained a 4.0 just to do anything that I could to get my degree by the time I was 23 years old. I reasoned that if I could no longer run down ER halls or lift patients, at least I could maybe be a nursing school teacher or a nurse in a calmer doctor’s office by the time my onset would start.
I just about exhausted myself to the bone trying to work as hard as I could to try to get through school and clinicals and anything that would require acute memory and little sleep and pushing myself to the limits before the time I turned 23. I had to get it done quickly while I still could.
It’s not at all that my mom’s life was over when she was 23. Far from that! She lives an amazing life. But I had taken ownership of the idea that it would be over for me. I had taken on this idea that if I expected the worst, then I would never be disappointed. I lived in a prison of wondering “what if?” and let it direct every step I took. I was terrified.
I was handicapped by fear, and nothing else. I was so afraid of trying to reach for the stars and finding that I wouldn’t be able to make it that I thought that if I could just accept what my fate was, everything was going to be okay. As a child, that meant not trying the monkey bars. As an adult, that meant trying not to dream. I sometimes struggled with anger at God. Why would He ask me to try to become something that seemed nearly impossible if I had inherited Ataxia?
I was trying to prepare for the worst. It meant trying to never get my hopes up – because my brother could use Rollerblades, and I could not. And I chose to believe that statistics were absolute and definite.
I married my husband at 21 and we both quickly discovered that us both going to school full-time and working full-time was not worth what it was costing our relationship. Through so much prayer and so much council, I chose to pause my pursuit so that he could focus on his accounting degree. I battled so much fear. I felt like a dream was dying. I was so afraid that I would never get that chance again, and so saddened at all of the hard work I had poured into it being in vain.
Today, my husband is still working diligently on his accounting degree. Today, I am halfway through this 23rd year of life and have no nursing degree under my belt. This year has been the hardest yet, by far. This year has been the year of facing this fear, head on. I encountered debilitating anxiety at the beginning of it. Honestly, my fear shifted from “What if I can’t ever be a nurse?” to “What if this means that I should never have children because I might pass it on to them?” to “Did I ruin my husband’s life by marrying him when we so deeply want children one day? What if he resents me for this? What if I shouldn’t have been born? Should I get genetic testing?”
“What if the truth is more than I can handle?”
Friends. I can’t.. even begin to tell you how deeply this rooted lie had taken hold. I can’t even tell you how many times I could hardly breathe or dream or hope. My mom’s life is incredible and is in no way a reflection of these fears having any place in reality. But fear is not from the Lord, and the devil is has come to steal, kill, and destroy. Over time, accepting these lies as truth, I just lived in such handicapped terror of the uncertainty. This lie had evolved beyond a fear of Ataxia and what it might look like. It had grown into a fear of my life being a mistake.
Please hear me – we live in a fallen world and we dwell in temporal bodies. At some point, we will all encounter the limitations of these fleshly bodies and someday we will see the glory of exchanging them for heavenly ones. Each person is fearfully and wonderfully made, and I hope that you understand that I am not speaking little of anyone facing any type of disability or sickness. Please understand that these fears had exceeded the contemplation of simply a neurological disorder or a future handicap and had articulated themselves in crippling anxiety and fear that had grown beyond that. It was fear of the unknown. It had moved beyond the fear of a handicap or fear of a disability into fear of believing that I could expect anything except for the worst that life had to offer – in any area. It grew and grew and grew.
I broke down one day and finally brought these fears to my family. I had lived in such secret panic my entire life, and I had been so afraid to bring it to light because I thought it would make it more real. I thought I would be encouraged toward genetic testing and was so afraid of what that might do to me. I thought that if I spoke those words that it would speak my fears into existence.
But my sweet parents were so encouraging. They spoke life to me in a whole new way. They explained that different types of Ataxia could be hereditary or could be the outcome of various events such as an injury, chemical exposure, or other things. They promised that they had never seen any evidence in my life that would lead them to believe that I had it. They reassured me that they were confident that I had nothing to be afraid of.
And my dear, sweet husband.. He showered me with compassion, kindness, and patience. He reassured me of his vow of for better or for worse, in sickness and in health. I had admitted to him before in small instances that this was a concern of mine and he had always been so affirming that he felt such a peace that this would not come to pass in my life. He prays for me daily and speaks courage and joy over our future. He reminds me of the faithfulness of the Lord and that He is a good Father.
Bringing this to light brought such freedom to my heart. I had found such a familiarity in fear. I felt for 23 years that if I assumed that only the worst was to come, I would never be let down. I watched everyone else around me live lives that flourished and I felt like a bird with faulty wings. It was as if for the first time in my life, I allowed myself to believe that God’s goodness was not just for everyone else – but for me too.
The truth is, it really doesn’t even matter. It doesn’t matter if I get Ataxia. It doesn’t matter what may come to pass, in any area of life. I know that we all are existing in this uncertainty of what tomorrow brings. In our health, our relationships, our finances – any area of life. This world is passing and all things are temporary. This is not our home.
This is about living beyond the fear of “what if?” because it cripples our ability to see beyond our worst expectations. It hinders us from embracing the truth that God truly does use all things for the good. It denies us the peace and joy of resting in His providence. As we dwell in the prison of “what if?” we are choosing to be slaves to the idea that His plan is not the best plan for us. It convinces us that if these fears and anxieties unfold, that He isn’t the loving and faithful Father or the Promise Keeper that He promises to be.
Sweet friend, if you are at all in the throes of wondering “what if?” I am praying that God would give you the courage and the strength to bring that to light. It has taken most of my life to find the heart to be honest with my family about my fears and to be honest with the Lord that I could not trust Him fully in my own strength.
By bringing this to light, He has shown me through my family and through His Word that fear is not from Him. He has shown me that there is no height or depth that can keep me from His love, and through the tearing of the veil that there is no power in this life that is greater. Truly goodness and mercy will follow me all of the days of my life because regardless of what this life may bring, it is obedient to Him. Even so, He is worthy of praise. Even so, He is in control. Even so, be still my soul, because greater is He in me than He who is in the world.
He is God, and I am not. for this reason, I shall not be afraid.
We went on vacation to Florida a few weeks ago, freshly after God had brought such new light and peace to this situation. The beach front condo that we were staying at had paddle boards available and attempting to try it out would have NEVER been something on my radar before. I would have told myself, and everyone else, that I absolutely could not. I would have allowed defeat in my mind before even touching the water and this limitation would have prevented me from doing it because I would have hardly known to try.
But I paddled out, I prayed, and I felt a booming courage in my heart saying, “You can do this!”
And I did. I may or may not have shed a tear or two, by myself, out on open water. I know I will never, ever forget that moment. Because after 23 years of believing I shouldn’t even try because I’ll fail…
I stood tall.