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

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.

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