PLEASANTLY ANTICIPATING THE HANDS OF FATE: MY SPINRAZA JOURNEY – PT. 5

We never really know when the biggest days of our lives are about to take place. At least not until they’re actually happening.

One of the biggest days for me? It was the day I started Spinraza. Except my biggest day was initially masked by fear of the unknown and the hesitation to go through something so potentially life-changing that my earth could shatter if it didn’t come to fruition. The funny thing about earth-shattering fear, though, is that it reminds us that we want something- something so passionately and out of our control that, if we lose it, we might not ever be the same. Fortunately, the resiliency of the human spirit allows us to pursue whatever it is that we fear the most, knowing that the possibility of what we have to gain far exceeds anything we have to lose.

So, with that, I decided to pursue the Spinraza treatments.

Embarking on this journey, I had a general idea of what to expect: spinal taps to administer the drug, stay at home to avoid germs (advice from my doctors but, ultimately, my choice), and wait to see if and how my body reacts to the drug. Sure, I was on the right track with my expectations, but what I experienced was so much more.

About a month and a half into my journey with Spinraza, I began to feel stuck. Having to stay home meant I’d go days without leaving the house or seeing anyone other than my parents. Every day, I’d wake up feeling depressed, and, truthfully, I hated admitting it. How could I be in such a dark place when something I’d been waiting for my entire life was finally happening? I asked myself this question every damn day, but every day was the same. My body wasn’t any stronger. My life was completely stagnant. Everyone seemed to be moving forward and carrying on with their lives while I stayed behind and watched. And, worst of all, I feared everything I had sacrificed would ultimately be for nothing.

Being alone with my thoughts for long periods of time resurfaced a lot of negative feelings I had buried deep inside of me- things I had not wanted to deal with over the years were creeping their way out. But, despite the messy emotional state I was in, I knew that the only way out was to take action. For myself. By myself.

That was when everything began to change. And, by everything, I mean everything, all at once.

 

My nurse had arrived for her 10pm shift one night in February, and per usual, she greeted me with my Flovent in hand and her usual bit.

“Yo, how are you?”

I took a deep breath because, typically, saying a mere sentence was enough to knock the wind out of my weak, little lungs. “I’m good, how are you?” I asked while letting out a long sigh.

Puzzled, she said I didn’t sound fine, and I laughed because she was absolutely right. That long sigh was SUPER dramatic but totally accidental, and it was the moment I finally said “it” aloud.

“Usually I need to take a deep breath just to say a few words, but I think… I think my lungs are getting stronger.”

About a week after my fourth treatment, I had begun to notice some slight changes in my respiratory function but was so afraid that it was too good to be true. So, I kept it to myself. My biggest fear was to tell people about this newfound strength and suddenly have it disappear. I was already dealing with enough emotionally, I couldn’t prematurely share how I felt only to potentially let these people down.

Telling this to my nurse felt wonderfully liberating. Thirty minutes later, my brother unexpectedly called.

“You didn’t even call,” he responded when I greeted him. I asked what he meant by that, wondering if he was trying to pull some kind of joke on me.

“It’s my birthday, and you didn’t even call! Mom called. Dad called. Our aunts and uncles and cousins called- even our family from Portugal called! But, nothing from my sister..”

I hurriedly tried justifying the fact that I didn’t call. I texted him all day. I gave him a birthday shout out on Facebook. But, he had every single right to be upset. I didn’t call, and I should have. Feeling absolutely terrible, I apologized. And, Adam being the best brother, accepted my unjustifiable reason for not calling him and told me he still loved me. Phew.

Still, I hung up the phone feeling so angry with myself (I’m still so sorry, Adam), and that was the moment that changed everything.

From that point forward, I had realized I needed to stop being so self-absorbed with my own issues and start restructuring the voice inside my head to be more constructive and less destructive. To do so, I needed to learn new ways to find, and be grateful for, the simple joys in my everyday life. Like when extraordinary meets the ordinary. Magic slips into the mundane. And, light shines through a world full of darkness.

The last month and a half have been filled with just that- extraordinary, magic, and light. I’m shedding old layers, layers that have weighed me down for so long, and traveling down a path of self-discovery. And, the best part of all is I get to do so with a little, miraculous drug called Spinraza.

happyBeing one of the first adults, if not THE first adult, with SMA type I to receive Spinraza, all I wanted were small, little victories- tiny, almost insignificant changes that maybe weren’t visible to the naked eye but were enough to make me feel stronger on the inside. Enough to tell people, especially those affected by SMA, “hey, guess what! It works. Maybe that means it’ll work for you, too.” And, well…that’s exactly what has happened.

Today, on April 2, 2017, my lungs are stronger. I haven’t been to the hospital to measure this small, little victory, but I can feel it. I’m able to speak louder and more clearly without getting as winded. This leaves me feeling more energized and actually able to carry on a conversation. I’m less afraid to speak on the phone because, now, I’m more confident in knowing I can project my voice. Anyone who knows me knows I used to have extreme phone phobia due to my weakness.

Best of all? I’m able to obnoxiously sing along to the radio and act like an absolute fool again. In fact, I took a break from writing this blog post to have a singing and dance party with my mom and, you know, Whitney Houston (yes, dad, this is what we do when you’re not home 😉 ). Best. Feeling. Ever.

Although not realizing it initially, choosing to receive Spinraza is the day my life began to change, both physically and mentally- the biggest day of my life, thus far. Truthfully, I think the biggest days of our lives are actually the ones when we’re not expecting anything big to happen. Those are the days that become unlike anything we’ve ever experienced before. The days when extraordinary meets the ordinary. Magic slips into the mundane. And, light shines through a world full of darkness.

Those are the days that change our lives forever.

Posted by

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✨

35 thoughts on “PLEASANTLY ANTICIPATING THE HANDS OF FATE: MY SPINRAZA JOURNEY – PT. 5

  1. You continue to amaze and inspire me Alyssa! I’m so happy that the treatments are helping you. You are fighting so hard both mentally and physically and you deserve it!

  2. You are amaing Alyssa, and I’m so happy for you. Stay strong and know everyone is praying for this miracle.❤😘👍🏻

  3. As I read this to MFT, and cried, I couldn’t think of how to tell you what I’m feeling! My heart is bursting for you! I want everything for you, because you are one amazing, unselfish, beautiful young woman! I will patiently wait for more, as I know it will happen! Love you forever, MFA!!

  4. Ahh reading this brings an uncontrolable smile at the same time as tears!! Im so so happy to know that even if one of the only differences that come from this is improved lung function..well than its more than worth every moment of this journey!💜

  5. Loved reading this. My son Cameron has been receiving the drug for over 3 years. He’s too young to tell us how he feels about the effects of the drug so it’s really great to hear from a adult about the progress. Thank you!

  6. Thank you for your news. Like it. I am SMA III and we are still waiting for the approval in Europe.
    This is amazing progress, keep fightin and singin…

    Many greetings from Prague.

  7. My daughter also has SMA type 1, she is 15 months and we have just started spinraza. I don’t know what her journey is, no one knows, but I am full of hope for her. You are an incredible brave woman, I wish with every injection you become stronger, and stronger and dream the things you have wished for. Keep smiling and amazing the world.

  8. So happy to hear of your success with Spinraza, my son is 17 with SMA 2, the Docs are dragging their feet on starting him because they think there might be complications from the anesthesia. My view is that, he’s not going to get any stronger by waiting………Look forward to reading more of your journey!

    1. Spinraza is possible without anesthesia! I have to be awake during the administration as I am too weak to go under. Best of luck to you and your son- hopefully you can find a solution!

  9. Hi Alyssa! My name is Kerri Costello and I’m 30 years old with SMA type 2. I started following you on instagram to make sure I’m up to date on your blogs and journey. First of all, I love reading your blogs. They’re written out so well that I just want to keep on reading haha! Your personality shines through and I just love it. Second, but more importantly, I am so beyond happy to see that Spinraza is working for you! As we both know, lung strength is key and to see that you are gaining that strength, is so exciting. What a win. I hope that you keep on seeing these little victories in the coming months:) All of my best ❤

  10. Alyssa it was so wonderful to read about your good news! Thinking about you today and smiling because you are something very rare! Take care 💐

  11. Thank you SO MUCH Alyssa for sharing. For taking on this extra effort to GIVE SO MUCH to people like me. It’s worthy beyond words to hear your story from you in person.

    Love
    Johanna

  12. Allysa, thank you sooo much for sharing your thoughts and emotions with us. After reading about the progress you have made, I feel like you gave me new energy and hope to fight to defeat SMA my daughter is suffering from.Hope new miracles appear soon in your life…..Please, keep sharing with us…..Lenka

  13. Thank you so much for this post! My husband and I are adopting a little girl (11 years old, I guess not too little😊) from China with SMA. I don’t know many details so I am just desperately trying to get as much information as possible before she comes! She is wheelchair bound and we are completely ignorant when it comes to any of this. (I’m afraid to write this post right now out of fear of saying something insensitive because I really am ignorant) Most of our family and friends totally support us but there is still some close family that haven’t been much of an encouragement. I like to encourage them with stories like these.
    It was love at first site. We started the process looking for a toddler with correctable physical needs but i saw her and knew almost immediately that she was my daughter. We decided to adopt her before I knew anything about spinraza or the fact that there is hope in the near future for even more breakthroughs. I’m thankful for that, we were forced to embrace the worst case scenarios and now we can add more and more hope. I don’t know if that makes sense. Anyway, my point is, your blog is an encouragement! I’m so thankful I’m able to get a little insight into the mind of someone with SMA. I want to understand what she is going through as much as I possibly can without being in her shoes. This is my favorite SMA blog! Thank you!

    1. Mandy, I’m sure it’s all very scary and nerve-racking and wonderful and exciting to be adopting a child- never mind a child that’s affected by SMA! But, from what I’m reading here, it sounds like you and your husband are going to be GREAT parents! There are so many resources out there to help. Be sure to check out Cure SMA, and if you have Facebook, join some SMA groups as well. The SMA community is incredibly supportive and always willing to help! Thank you for such kind words. ☺️

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s