I woke up the other morning feeling frustrated and discouraged about not seeing any measurable progress from this treatment thus far. When my mom came in my room to get me out of bed she said, “be positive, Alyssa. You have always used positive thinking to get you through the hard times.”
She was absolutely right. I’ve always been a firm believer that thinking positively is half the battle in overcoming any sort of obstacle. After all, it has been my tried and true method for 26 years. But, that morning, all I wanted to do was stay in bed until the day I woke up finally feeling stronger.
I knew it was still too soon to know whether or not this new drug would be effective as I had been told it would take 2-3 months to take effect (IF it’ll take effect), but I was hoping to be…thrown a bone if you will. I was hoping for a super small victory or an “a-ha” moment that would reassure everything I have been going through- all the sacrifices I’ve made, all the pain I’ve endured, all the emotion that comes with so much uncertainty- would be worth it in the end.
And, maybe there has been a small “bone”. There have been a few instances where I’ve had to stop to think if what I was doing in the moment I was able to do before. But, I’ve shrugged it off and gotten angry because I overthink to the point of second-guessing myself into a downward spiral of frustration and bitterness. Why was I never this self-aware prior to receiving Spinraza?? If only I had paid closer attention.
This has been the most difficult journey I’ve ever been on, and with each passing day, it only gets more difficult because this treatment is everything I’ve ever wanted in my entire life. To be able to breathe just a little better, to chew and swallow a little stronger, to move my arms a little more- and, by “little”, I mean the slightest, almost insignificant to the naked eye changes- would make a HUGE, life-changing difference. Knowing this, and knowing that it could all come crashing down as soon as a couple of months, paralyzes me with fear.
But, I won’t give in.
Because, in spite of fear, I remain grateful. I’m grateful for my mother who has been a sounding board and best friend to me through all of this. I’m grateful for my father who has been managing to work full time and still be proactive with my treatment plan and our insurance now that it’s FDA-approved. I’m grateful for my brother, sister-in-law, and future nephew who, when I put my hand on his momma’s belly, kicks to say hi to his auntie- excuse me, FAVORITE auntie. I’m grateful for friends, both near and far, who have gone out of their way to love me a little harder and distract me from all these thoughts swirling around my head during this time.
And, I’m grateful to have the opportunity to share my journey with you.
I went into this blindly. Without knowing if my body is capable of reaping the benefits of this drug. And this not-knowing, shot-in-the-dark kind of thing absolutely terrified me.
Yet, after much consideration and many sleepless nights following that initial phone call on December 4th, I decided to be vulnerable and put myself out there to hopefully help others and provide some firsthand knowledge on what this drug treatment is all about even though I was hesitant. Really, truly hesitant about sharing my experiences with the world because I knew this time of fear, discouragement, and uncertainty would inevitably come in the midst of so much unknown. (And, truthfully, I’m not a big fan of talking about this kind of stuff. I don’t want pity or sympathy because that’s far from the type of person I am.) But, also because I’m afraid to let people down- people like my family, friends, and strangers from across the globe who are following my journey and hoping for the best outcome- whether they have been affected by SMA or not.
Despite these feelings and the fact that there was a possibility I may not have good news to report after a few months, though, I felt it was important to be as open and honest and raw to make this story as real as possible to everyone reading it and learning about it for the first time.
Because I did go into this blindly.
But, sometimes in life, we just have to chase that not-knowing, shot-in-the-dark kind of feeling.