Double Digits: My Tenth Dose of Spinraza
I just received my tenth dose of Spinraza this afternoon. For those who have not been following along, this is a treatment for my condition, Spinal Muscular Atrophy. It is administered three times per year via lumbar puncture and interventional radiology. I started receiving them in January 2020, and you can read some of my immediate reactions to receiving this treatment in the first few pages of my book, Disability and the Problem of Evil.
For someone who has always been afraid of needles, every trip to the hospital is a small act of courage. While I am not trying to over-inflate my own bravery or over-dramatize the procedure, it is encouraging for me when I complete each procedure. Even if it is something relatively minor, it feels good to have the adrenaline rush of facing some adversary and overcoming it. Keep in mind that my adversary in the scenario is a procedure that literally took three minutes today with very little pain (probably the best one yet). It is primarily a psychological adversary, but those adversaries must also be defeated. As we say in sports, a win is a win. I always feel like I’m on top of the world on the car ride home. In fact, I have basically been smiling all night.
Speaking of the procedure’s psychological elements, my mom and I discussed how this procedure impacts both of us. For me, there is the anticipation that it might hurt really bad. It has never hurt really bad. The doctor is excellent, and because we have worked together several times now, he knows exactly what he will do and how to insert the medicine quickly and easily. However, there is still that lingering doubt that likes to emerge right before and during the procedure that sometimes overpowers rational thought.
Interestingly, my mom was talking about how it is somewhat hard to help put me on the table, knowing that once I am on that table, I will have to deal with some pain. Again, rationally, she knows this is a good and beneficial treatment, but it is still not easy for her, either.
When I write an article like this, someone always asks me if I feel like I am improving or gaining additional strength. My answer is somewhat complex. If you measured my strength on a scale of 1 to 10, wherever I fall in that range is probably not improved. I don’t know that I have gained additional strength. However, Spinal Muscular Atrophy is a progressive condition. Therefore, you expect a downhill trajectory. I do not believe I have seen that downhill trajectory, either. If my strength were a 2, without the medication, I would probably be down at a 1.5, so the fact that I remain at 2 can be seen as a gain from some perspectives. That’s why it is a rather difficult question to answer, at least for me. I don’t have all of these new skills, but I don’t think I have lost any skills either, so I view that as a positive.
The best part about today was that I don’t have to deal with another one of these for another four months. I don’t mean to imply anything bad about the hospital, doctor, nurses, or medication. They all are excellent. I just like to minimize the number of stressful days in my life, so it is nice that these do not come up all that often.
Those of you keeping score at home might remember that each dose of Spinraza carries a price tag of $125,000. My back is now worth $1.25 million, which is equivalent to the annual salary of Washington Nationals’ third baseman (and former Phillie) Maikel Franco’s 2022 salary. If I keep at this long enough, maybe I will end up with Bryce Harper numbers.