You just have to trust the process.

I wanted nothing more than to believe these words this summer, but I was desperate for answers. I was desperate to find truth in something that was completely out of my control and lost sight of the only truth there is to know: Sometimes, you just have to let go.

You just have to trust the process.

But, May happened.

May happened. And, June and July happened. And, the collection of what happened during these months eventually led to a hospital admission at Boston Children’s Hospital.

“I think your team of doctors can agree that you are one of the strongest patients we have,” my doctor gently spoke at my hospital bedside.

My eyes welled with tears because I wanted to believe in his words but couldn’t shake the feeling of helplessness. His voice faded in the background as I started recounting the trail that led to this moment in time. Questions about what was happening to my health were turning into questions about myself: what was happening to me? Would I ever find my way out of this darkness? How could I possibly move forward if I can’t get answers?

All of these questions flooded my head. That girl looking back at her doctor was a stranger to my soul. She was weak and worn, and she fought like hell only to surrender too soon to her battle. That girl was nothing but an empty shell with a no vacancy sign who inconveniently resided in my body and over welcomed her stay.

The truth is…

I tried to write this blog post  t h r e e  times and failed. Not because I didn’t know what to say or how to say it but because I couldn’t bring myself to relive this season of my life. Each time I’d prepare to write, I’d break down because I wasn’t ready to accept what had been. But, today I am letting honesty and God take my one little hand with my one little finger that types this story to you. And, I hope that as you read it, somehow these words will resonate with you.



I remember laying on a couch in my friend’s office 5 days after my hospital stay and finally admitting that this wasn’t the summer I had intended on living. I was looking forward to the idea that Spinraza would potentially give me more energy to do the things I love in the summertime, and I was very much looking forward to not being confined by the four walls of my home. I had just spent four long winter months indoors avoiding the cold and flu season and daydreaming of the millions of activities I’d do as soon as summer hit. I made lists and saved money and conjured up all sorts of adventures with friends. But, instead, God had other plans.

It was truly the first time I recognized aloud I was disappointed and discouraged. The truth was I was tired. So emotionally tired of hiding behind the facade I created for others. On the surface, no one would have ever known that something was wrong. I smiled at strangers. I spent time with friends. I did my work, and I did it well. But, the second I was alone, I’d crumble. And, I’d cry. And, I’d tell my mother how badly I didn’t want to live this life anymore, and she’d cry right beside me reassuring me to have faith and keep fighting.

Here’s the thing. I am still not even sure how to make sense of everything because no one can seem to find an answer to my symptoms.

And, if I’m being truthful, I’m hesitant to hit publish on this post because this is foreign territory to me.

Not having answers and being left in the dark is not something I typically write about. I always wait for the aftermath- for the light that leads me out of the darkness and makes my world even brighter than I originally left it. But, what about that darkness? What about the moments that cause us pain and heartache and the ability to feel numb? As much as we fight it, that serves a purpose, too.

It’s a vulnerable process to relive everything so openly and honestly. No one ever likes to mention the parts when we’re living in darkness, but these are the parts that refine us. They’re the parts that unravel us undone from the inside out so we can find new ways to put ourselves together again. In the darkest moments can we learn to shape ourselves into stronger and more resilient human beings- but, only if we choose to see it that way.

The same goes for how we choose to see the seasons of our lives. My life flipped the light switch to off one week in May. On top of dealing with some personal matters, my brother accidentally hit my head against a wall while transferring me. Then, 3 days later, I had my “episode” during a root canal. My presyncope symptoms persisted after the dentist, so days later, I paid a visit to the emergency room. Everything looked okay. My CT scan showed no serious head trauma and I was discharged hours later with just a minor concussion.

However, my symptoms grew worse. The vertigo became constant. The feelings of lightheadedness became more frequent.

I increasingly became more broken.

It was the Fourth of July when I truly came undone. My family was under the impression I wasn’t feeling well and couldn’t attend the parade, but the truth was I was laying in bed uncontrollably crying my heart out to my mother. I’d mumble words in between tears and she stroked my hair listening to every helpless word and begged for me to try and keep fighting. To try and work past those feelings. To try and live the life she knew I deserved.

But, nothing about living in the dark makes you feel deserving.

Sometimes, there aren’t enough words to paint a picture of your life at any given moment- this was one of those times. All I can say is that, emotionally, I had surrendered. I no longer had what little control I had left over my body, and for that, my fight grew weak.

Anxiety paralyzed me, and depression nestled its way into my brain. I was lost. And, in being lost, I was letting the darkness win. I was letting my fears and anxieties guide the way which only brought me further into the unknown. That’s the thing about darkness, though. It does everything in its power to shadow the light.

My symptoms became so magnified and intense that I was quickly developing fears over things I loved most. I was excusing myself from Working On Walking meetings and hangouts with friends because I couldn’t control my emotions. Family gatherings turned into panic attacks because questions of how I was feeling were answered with creative ways of lying. Back then, I resented this question because I thought they’d never understand. Today, I’m grateful for their love and support.

Much of this season of life became a blur. I felt trapped inside a body that didn’t want to fight. My extremities would get numb and tingly for hours. I’d have sharp pains in my chest and shortness of breath on top of my vertigo. And, the feeling of almost passing out became so constant I could no longer sit upright to leave the house.

By the end of July, I had been admitted to the hospital. Needles stung my skin and radiology scanned my brain and bones. Yet, I was still left without answers.

My doctors were perplexed by my perfect bill of health according to the tests and the fact that this all started during a routine root canal procedure. Dehydration and hypoglycemia were likely the causes of the numbness and tingly sensations, but everything else was left unanswered and to be determined. Two days later, I was discharged.

I spent the next several weeks between wanting answers and learning to trust that this was all part of God’s plan. I got my hands dirty in planning for the Working On Walking Fundraiser and forced myself into situations to keep my mind busy and free from anxiety. My presyncope episodes somehow faded away on its own and I learned to become familiarly acquainted with my vertigo. Still, so many unanswered questions echoed in the back of my mind that even still linger to this day.

For months, I spent countless hours at countless appointments with countless doctors referring me to countless exams. I had one doctor abruptly abort a vestibular test because he suggested that my symptoms were indicative of something life-threatening. (Several tests and days of crying fearful tears later, his findings and assumptions were incorrect.) More than anything, though, I spent countless days searching for answers instead of searching for peace, a peace that I so desperately owed to myself.

However, today is different.

Anxiety, depression and mysterious health issues are each their own perfect storm. When they collide together, all they leave in their warpath is rubble- bits and pieces of a person that used to be. It may seem devastating, but when you take a break from the crying and the panicking to step back and look at your brokenness before you, you learn how to accept the process. And, you realize that what once was considered your destruction is now the beginning of an opportunity to rebuild.

I recently experienced my first Reiki session from a close friend of mine, and for the first fifteen minutes, I drilled her with questions about this art of relaxation and its validity. I wanted to believe in this ancient Japanese technique, but my speculation drove my obsessive need for answers. That’s when I heard the one thing I needed to hear all along.

“You just have to trust the process. This applies to everything in life, actually.”

I took a deep breath. I reflected on my brokenness. Then, finally, I understood.

Life isn’t about having all- or any- of the answers we want or need. Life is about the process. It’s about learning to let go and forgive yourself for the things you allow to weigh you down. It’s about learning to surrender to God’s will.

Just as the day will turn to night, darkness will turn to dawn. Oceans will ebb and flow. Seasons will come and go. And, so, we must be willing to accept and adapt to what is in our lives as we follow our own compass. At the end of the day, everything has a process.

It is up to you to decide to trust in it.




Author: Alyssa

Chronicling my journey while teaching the world that I have SMA, but it will NEVER have me. Life's what you make it, dare to make it a remarkable one✨


  1. You are REMARKABLE! I say it all the time! Also, our friend has done reiki on me , if it’s who I think it is! Incredible!! I’m here for you anytime! I’ll say it again, I’m so proud to be your aunt! Love you till the stars fall from the sky! MFA

  2. Hi Alyssa! My name is Maria Eleni and I am 21 years old. I have SMA type I as well 🙂 I actually found out about you through my uncle. He lives in Rhode Island and used to buy your cards! I absolutely love reading your blog! You are a beautiful person and God has given you so many talents! This is so beautifully written! I really connected with your recent health challenges. I actually suffer from all of the same symptoms that you described. I have severe vertigo as well as the pre-syncope episodes! I went through the same period of time in my life very recently over the past year. It got to the point where I could not even stand to get out of bed or move on all because of the lightheadedness and I feared that I could not go on. Words cannot describe how horrible it is to feel as if you are blacking out 24 hours a day. It’s shocking and also comforting to know that someone understands. My neurologist spoke to some SMA specialists at the recent SMA conference in Florida and said that many type 1’s suffer from the extreme lightheadedness that we experience. They believe that it is something known as autonomic nervous system dysfunction. The autonomic nervous system regulates all of the body’s involuntary functions, such as blood pressure. In our case, the autonomic nervous system loses the ability to regulate the pressure in our arteries. The lightheadedness specifically is an issue of blood not reaching the brain from changes in blood pressure. I started measuring my blood pressure and noticed that it was low all the time. I finally found relief from the symptoms when I raised my blood pressure by adding salt to my tube feeds. For me the issue was low blood pressure, which is very common for people with SMA. I really hope this helps because I understand the tremendous impacts of these symptoms and the terrifying thought of having to live with them forever. Please feel free to reach out to me with any questions. I admire you so much and I would love to be friends with you!

  3. I am in awe of your strength and honesty. I have always been amazed by your talent. But to share this is without words. May you always remember that there are many surrounding you with love and light and healing energy. I am honored to be one of those sending them to you.

  4. I read this tonight as I am coming through a terribly difficult season of physical pain due to the residual effects of a condition called Guillain Barre Syndrome (which I contracted twice), sleeplessness due to pain, and the resulting anxiety and depression as I have been making several adjustments to lifestyle and medications…and I really appreciate the beauty and wisdom of your words. You have to trust the process and the people around you, who love you and truly want what is best for you. You have an incredible gift with words. Don’t give up–you owe it to yourself, even when you don’t feel like it is worth it. And thank you for sharing your process with the world, we are richer for knowing about you. xoxo

  5. Thank you for the chronicle (your word in your short bio!) that is written here—you give up you show up you let up and then then then the changes become apparent, those inner amazing changes that were forming and reshaping all-the-while. It is a strange formula, Alyssa! I read here, and hear you—that it IS a formula. It is life keeping itself on its mysterious level. That mystery is the only constant.
    ~~~~~~~~~”All I can say is that, emotionally, I had surrendered. I no longer had what little control I had left over my body, and for that, my fight grew weak.”~~~~~~~~~~~~~~This depiction of yours! That ‘FIGHT growing weak’ explains to me that the resistance we create is actually a choice too. What happens if I do let go? What happens is that my God has room, room to make changes happen within, (in the darkness that is not dark at all, but full of light!!) and eventually, hopefully changes happen on the outside me too. The only way I know there are changes is because others reflect them to me. Thank God for others, right?
    This is a rich written gift you have shared. It is reaching me on my journey-chronicle! Thank you. Thinking soft thoughts of you and sending them on prayers,
    Jane Allard, a reader

    1. I heard a podcast recently about the whole chrysalis world—caterpillar wraps up in a cocoon and transforms into ta-dah a butterfly. There’s the part of this imagery that says if you open the chrysalis at too early a time, you do not help matters. Well, some science-y person did and discovered that the caterpillar gets really unrecognizable—all fluidy actually and you would never know that a winged, larger, alive butterfly can come of the translucent blob that is the middle-phase between caterpillar and butterfly. So actually seeking the hard copy answers may actually be messing in the mush. Like you say, we have to wait AS the darkness turns into dawn. I know, the waiting is challenging to say the least. The mushy part!! All hail the mushy part!! 🙂

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