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LET YOURSELF SURRENDER

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.

 

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THE SKY’S THE LIMIT

Even on a cloudy day, this view is pretty remarkable… am I right?! I remember leaving this venue for the first time with a gut feeling that this was where our next Working On Walking fundraiser had to take place. It was absolutely freezing outside, but something about this place just seemed so warm and inviting. Not to mention that every little thing in there was brand, spankin’ new!

So, I went home and told my mother all about it (and probably forgot to breathe in between because I was SO excited), and she responded with “well, the sky has always been the limit for you! Get it? Skyyyline?” And, that’s when I knew. That’s when I knew this place was the perfect fit to help us find a cure for spinal muscular atrophy.

I think what’s so inspiring about the SMA community is our fight. It’s our strength and determination to never give up and never lose sight of hope. The sky has always been the limit for ALL of us, no matter what gets thrown our way.

I get chills thinking about the outpouring of support and generosity Working On Walking has received over the years from people just like YOU, and now we get to celebrate together at Skyline at Waterplace! Please join me and so many others on Saturday, August 26th for a night to remember as we continue to pave the way to cure SMA. Who’s gonna save me a dance on the dance floor? 😉

A SPINRAZA UPDATE PT. 2

I have a tendency to overanalyze every little aspect of my life, and as a result, I can sometimes second-guess myself into a fear frenzy. It’s a nasty habit, one I’m not particularly proud of and have been working through for quite some time. I don’t know when this came about or how I manage to create unnecessary chaos in my life, but it’s there. I recognize it. I work through it. But, in my moments of weakness, I let it consume me.

The days leading up to my fifth Spinraza injection were a little nerve-wracking. My vertigo wasn’t subsiding, I still didn’t know what was causing it*, and I managed to get violently ill one night due to stress. At the same time, though, I technically wasn’t sick. I was still going about my daily routine, and I didn’t feel under the weather. I was just having sporadic bouts of lightheadedness at sporadic times. I mastered the triggers and knew how these feelings would run its course, but in those moments, I panicked. With good reason, of course.

So, I tried searching for answers, an obvious sign that would involve flashing lights and flaggers dressed in black and white stripes showing me which direction to take. Should I postpone again? Or should I go?

Eventually, I stopped searching. And, instead, I listened to God, and I listened to my body tell me I’m going to be okay. So, I consulted with my doctor, and we decided to go forth with the procedure the following Monday.

“You don’t think the lumbar puncture will affect whatever is going on with me today, right?” I nervously asked my surgeon while lying in a pre-op stretcher several days later. Deep down, I knew everything would turn out fine, but my fear needed to hear that validation.

“Well, it’s either going to make you better, worse, or you’ll stay the same,” he joked as he gave the most ambiguous answer a doctor could give a patient as to not misinform them. However, knowing that he wouldn’t proceed with the procedure if it seemed risky, his ambiguity somehow comforted me. And, as we were heading to the operating room, he assured me a lumbar puncture shouldn’t affect my other issues.

After about an hour of prep and precise positioning, my surgeon leaned over and said, “anything we can do comfort-wise before we start?” I took a deep breath to release the tension in my body.

“A vodka soda would be great,” I sassily replied as humor is often the path I take when I’m feeling anxious.

Moments later, I felt the needle sting my back, and before I knew it, the procedure was successfully over. The anxiousness I carried with me, the doubt that lingered in my mind in the days prior- everything was over. Everything was okay. Everything was just how it was supposed to be for the first time in a long time. And, as I was wheeled off into the post-op room for my 1-hour recovery, my surgeon advised I hold off on the vodka sodas for a while. I chuckled and reminded him how grateful I am to be the best hands.

I left the hospital that afternoon with a great sense of relief, and that’s when I finally realized: if you allow yourself to listen closely, you will hear your instinct giving you a gentle reminder that you are so much stronger than what you give yourself credit for. Sometimes, it’s okay to let your fear talk the talk, but it’s more important to remember to acknowledge and honor the strength hidden in the depths of your soul. Because, like fear, your strength is always going to be there- no matter how far you’ve been kicked down, no matter how defeated you feel, and no matter how many times you let fear consume you. It’s all up to you to decide which path to follow.

Five treatments down, friends- let’s see what happens next. Want updates? Subscribe below!

*My symptoms are related to a minor concussion, severe seasonal allergies, and/or a vitamin deficiency. They have been lingering on and off for the last six weeks. How’s your spring going? 😉

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*Disclaimer: While my goal is to remain as open and honest with you on this new journey, the opinions expressed here represent my own and not the SMA community as a whole. Should you seek medical advice regarding Spinraza, please consult with a medical professional. Thank you for following along!

A SPINRAZA UPDATE: TO BE CONTINUED

Right about now, I should be laying on the operating table.

I should be clenching my mother’s hand and taking slow, meditative breaths as the surgeon carefully stings my lower back with precision. I should be listening to every click and every spin as a fluoroscopy machine rotates around my body. I should be receiving my fifth dose of Spinraza.

But, instead, I am here. Writing to you from my couch and listening to the rain fall, wishing things could have panned out a little differently today.

“I’m not sure if Monday is in my best interest,” I painfully said to my surgeon over the phone on Friday evening. The words tasted sour as they slipped off my tongue. How did I get here? I worked so damn hard to stay healthy this winter, then something completely out of my control decided to dictate this heart-wrenching decision. But, despite wanting to go for another treatment in the worst way, I knew I had to listen to my body, first.

“You’re a very unique case, and it’s always hard to determine what’s wrong with you,” he reminded me over the phone, advising against a lumbar puncture today. Just to confirm, he dialed in my neurologist who also agreed.

Of course, I’m a unique case, I thought- it’s been the same story for 26 years. But, as much as society tells you that being unique makes you admirable and different, every once in awhile, I wish I could just conform to the norm. I wish I could go to a doctor, have them tell me exactly what is wrong, and send me on my merry way. I wish I wouldn’t self-diagnose on WebMD and work myself into an absolute panic on all the possibilities that could be going wrong. I wish I had answers.

In my previous post, I mentioned how I almost passed out at the dentist. Well, what I thought had been a fluke had become an unfortunate routine for me. Three and a half weeks later, I continue to feel lightheaded. I continue to be sensitive to light. The slightest motions continue to set me off. And, these mini fainting spells continue to occur.

Worst of all, I’m not me. I’ve learned to put on a great show for others, and at times, I do have glimpses of my old self. I’ve learned the triggers and how to respond to them. But, it’s not enough. I’m generally a positive person. I like finding the good in every bad situation, but I’ve exhausted all my attempts at trying to make sense of this. I’ve reached a point where I don’t care about what’s wrong with me, and I’m tired of wasting my days in an ER or doctor’s office. (Doctors have some ideas, though.) I just want to get better. 

Amidst trying to find answers, though, I remind myself that this is all, and forever will be, in God’s hands. He is in charge of guiding the way, and I am in charge of following by faith. Today’s procedure wasn’t a part of His plan, and despite wishing it had been, I put my trust in Him knowing that letting go and putting my faith in God is the only type of control I will ever have in my life.

The past four months I’ve been extremely fortunate. Although I haven’t gained any strength since my last update, I’ve MAINTAINED, and everyone in the SMA community knows how victorious this sweet, sweet word is. Maintaining is good, and maintaining is promising. It means Spinraza is still residing in this little body of mine and working its magic. And, it means I still have time.

Time to fight whatever it is I’m fighting. Time to recuperate afterward. And, time to let God lead the way to my next appointment.

To be continued.