Another day, another spinal tap. I think that’s how the saying goes, right?
The ride to Boston Children’s was anything but peaceful yesterday. Bumper-to-bumper traffic on I-95 hit and, suddenly, I was most definitely going to be absurdly late to my third spinal tap procedure. Although only an hour away, smooth cruising en route to the city has never been a guarantee. Throw in a Monday morning and rush hour commute, my parents and I had basically set ourselves up for failure.
My mind drifted through the stop and go motion on the ride up as I’ve so frequently done these last few weeks. As the time since first starting this journey progresses, I find myself getting more anxious. The closer I get to the last loading dose, the closer I get to finding out whether this drug is going to be effective for me or not. With each passing day, I wonder if today is going to be the day that I finally start to notice a difference, but that has not happened yet. This isn’t to say I feel discouraged about the outcome thus far, but it’s more about an increasing feeling of fear and uncertainty that this could very well not work.
Through traffic jams and overplayed radio hits, I kept replaying in my head the 7 words my neurologist spoke on the night he called to tell us about this opportunity…
“Her disease may have progressed too far.”
Just like the local anesthetic the surgeon injects into my back, it stung a little to hear that. So, on the ride up to Boston yesterday morning, I started recounting all of my body’s little victories and defeats as far back as I could remember, and one time stood out in particular.
I had gone to the beach last summer, and following a day at the shore, I went to a Portuguese festival with my family at night. Although I kept it together in front of everyone, inside I was crumbling. My stomach was sick and every inch of my body hurt because I “did too much”. To an average person, it would have been nothing. After all, I simply laid n the beach that day and went to a local festival for dinner. But, according to my body, I pushed my limits far beyond what little I could handle, and that night, I went home and cried. Not because my stomach was sick or that every bone in my body ached, but because I wanted to have just a little more energy so I could be like any other 20-something-year-old.
To my surprise, the following morning I woke up feeling ENERGIZED- something that maybe happened twice a year. I remember being out “late” (I use that term loosely because late to me is 10pm 😉 ) for a friend’s birthday and feeling better than ever. I could speak over the loud music without feeling short of breath, I could sit up in my chair without getting tired and achy, and overall I felt AMAZING and STRONG.
I longed for that day again.
I kept going back to that moment while stuck in traffic, and I couldn’t help but wonder if this was a good sign for my future. These days of feeling truly vibrant and energetic are far and few between, but it is obvious that they are still possible. Could it be that…just maybe…this means I have enough strength hidden deep inside me to reap the benefits of Spinraza?
But, for now, I wait and see. I lay on the operating table and wait amidst all the poking and prodding. I wait while one of the most talented surgeons in the world carefully and meticulously navigates a needle to my spinal canal while still managing to crack jokes and assure all is well. I wait through the pain and emotions I feel, and by the grace of God and my guardian angels, I wait…and hope…for the best results.
And, I know, I can wait a little longer for this is the moment I’ve waited for my entire life.
For Celeste, an angel on earth and now an angel in Heaven. Thank you for watching over me yesterday and helping these words flow so effortlessly into this post. I’ll never forget how you always encouraged me to keep writing.
*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!