Last week I wrote about the different perspectives within the SMA community toward Spinraza treatment, with a brief summary of where I stood on the issue. As it turns out, the day after that column, my family and I found out that Medicaid had approved me for Spinraza (nusinersen).
Now, while this is no doubt great news, it also brought about a range of emotions for me. While people may assume that I’m experiencing nothing but joy and excitement right now, the reality is that I feel an odd mixture of gladness, guilt, confusion and anxiety.
On the one hand, I’m glad that I’ve been approved. Even if this drug works just a little bit, it could stop the progression of my disease. That’s huge, and it is something I would be beyond grateful for achieving. I’ve also heard stories from other SMA adults about it restoring some of their physical strength, which is also something I would love to happen to me. The benefits of receiving the treatment could be huge, and it’s something about which I’m hopeful.
At the same time, though, I’m anxious about all of it. If this were a pill or even a one-time injection, I wouldn’t be so concerned. But it’s not. It’s multiple spinal injections that I’ll receive on a regular basis. It’s a big commitment that can’t be taken lightly, especially since I’ve had spinal fusion surgery in the past and that could lead to complications with the injections. Sure, I’ve been in the hospital numerous times, but I’ve never done clinical trials or anything like this before. It’s a big step that I keep wrestling with over whether I’m ready for right now.
And, honestly, my main motivation for going through with it is my parents. If it were just me, I know I wouldn’t have worked as hard as my Mom did to get approved. I understand why my parents want it for me, and with everything they’ve done for me, it’s the least I can do in return. Still, the risk factors and the commitment aspects keep weighing me down.
I also feel guilty because of all this; I know there are people who desperately want Spinraza and haven’t been approved yet. I feel guilty that I’m going to receive it when there are others who want it way more than I do right now. I’m at a good place in my life, and while the benefits of Spinraza would be great – it’s also not something I’m desperate for right at this moment. I also feel guilty for not expressing an overwhelming sense of joy and excitement when my Mom has worked so hard to get me approved. I couldn’t help but feel all kinds of emotions at the news, none of which were overt joy.
Lastly, I’m confused. What do I do with all these emotions? Am I crazy for feeling this way, especially now that I’ve been approved? This is something I never thought I’d actually deal with. It’s a myth that all disabled people have some fantasy about receiving some sort of treatment or cure, and I know I’ve never given it serious thought. I assumed that if there ever was one in my lifetime, it’d only be for kids and that people like me would be too far gone. That didn’t bother me, though. I’m so used to SMA that I can barely imagine life without it. I feel like Brooks in The Shawshank Redemption, a man so institutionalized and accustomed to prison life that the idea of life on the other side is the real nightmare.
I know that sounds crazy, and Spinraza isn’t even a full cure. Probably the most radical effects it will have on me will be stopping the degeneration and possibly restoring some of my upper-body strength. Those are things I certainly want, but there are risks and commitment factors I have to face to get them.
Right now, it’s very therapeutic for me to write down these thoughts and feelings, no matter how crazy they may sound to other people. When my Mom told me the news, I spent most of the afternoon and evening writing out my thoughts and that helped me explain my feelings to my parents. If I’m going to go through with this process, I want to track every step of my journey.
This is stage one.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.