The Musk Effect

 I woke up the day after my infusion to find the room spinning.  Even once the spinning stopped, I still felt like I was a child in the back seat of my grandmother’s car on the winding mountain roads of West Virginia where we would go visit her family.  I used to sit there with my eyes squeezed shut complete missing the beautiful views while using all my will power to keep from puking.  I would keep my mind on the prospect of seeing my great aunt Francey, the one most like me, with her heavy freckles and love of pickles and the sheer stubbornness that kept her living in her house way up in the Cumberland mountains despite her advancing age.  She grew her own food and stored it, canning and drying and stowing her potatoes in the cool cellar, to last her through the months when the ice on the steep road down would trap her up there.

 

Dizziness and nausea are common the day after IVIG, but it was an unfortunate day for it to happen for the first time because I had to be at work early.  A client who has been trying to apply for SSI finally had his phone appointment and because his disability causes communication problems, there was no way he could do it without me.  When I used to take methotrexate, a chemo drug that is used to treat lupus because of its immunosuppressive side effects, I carried a plastic bag and some damp paper towels with me everywhere in case of random vomiting so I fell back on my old strategy.

 

All the way into Manhattan, the client was sending me anxious texts about various questions he thought they might ask, and I kept telling how to answer.  He got to my office before I did, and we both waited for the phone to ring.  The appointment time came and went.  I knew we had the time right because I had received a confirmation text the day before, so we kept waiting.  After 90 minutes, we decided that they weren’t going to call, the second time this has happened to this particular client.

 

Before COVID, if you wanted to apply for SSI (for low income people w disabilities), you could walk in to local social security office and eventually they would see you and initiate the process.  After COVID, you had to call for an appointment, which meant a long time on hold but eventually they would schedule the appointment so you could go in and  get started.  Since Musk decimated the social security staff, the wait times when you call have gotten much longer, usually at least three hours, and when you finally get someone, they tell you they don’t have any appointments available and that they will have the local office get back to you.  When the local office does call days later, it’s no longer a conversation where you can tell them if you’re not available, they only offer one appointment, take it or leave it, and it is a telephone appointment.  Then, as often as not, they don’t call and you have to repeat the whole cycle.  The net effect of this is that they are cutting SSI without the backlash that officially cutting it would cause.  Preventing people from applying means less money that they have to pay out in benefits.