Trigger warning: unaliving is mentioned

I had my second opinion appointment at a major university hospital last week. It did not go as I had planned or expected. I’m going to touch on something that happened unrelated to the appointment and it may be controversial, but I feel it needs to be said and given light of day.

I was taken to my appointment in a large city by a family member I have known for a long time, because driving long distances with this chiari malformation causes my neck to go into spasms and I can get vertigo at any time. Plus, it feels nice to have someone go with you to appointments.

As I was waiting in the 10th floor waiting room with the person who took me, this person was very focused on why the receptionist was wearing gloves to clean the desk with disinfectant wipes. If you know anything about the medical field, the wipes are the ones with the dark purple top and you absolutely have to wear gloves to touch them because they are a known carcinogen. I tried explaining this several times, at which point the focus moved to the receptionist wearing a face mask. Likely she is patient-facing all day and has either been told to wear a mask or chooses to do so. I have been in several offices where the staff wear masks because that is their choice and they may have a condition that requires them to do so. In fact, I know of one office staff member who wears a mask every day because they have a very serious autoimmune condition and wants to be cautious. As I see it, it costs me nothing to respect that decision and either wear a mask or simply let them live their life the way they want to. It’s kind to let people live the way they want to live if they aren’t hurting anyone. And that’s the end of it for me. It starts and stops at kindness. 

So this was the discussion that arose from the receptionist wearing the mask: I explained to my family member what I’ve just typed here. And I mentioned that I try to avoid getting sick as much as possible, because it aggravates my vertigo so badly and I already have that to deal with at baseline. My family member proceeded to tell me that I should end things if it’s that bad. And by end things, I mean unalive myself. Remember, I had yet to see the doctor, I’m sitting on the 10th floor of a building in a major city about 45 to 50 miles from where I live. I think my heart dropped to the first floor lobby before I said, “I want to live. I am at this appointment seeking another opinion to try to get some help so that I can live.” That comment was met with a smirk and a comment I can’t even remember. Something along the lines of, “That’s true,” I think. Inside, I was screaming and seeing red and wanting to run away, but my physical body couldn’t do those things. I had to sit there and wait.

Shortly after this, my name was called and to cut to the chase, the neurosurgeon was very nice and explained to me what a chiari malformation is (even though I already knew), and told me that my CSF is getting around the malformation, my brain stem is not compressed and he would not operate on me. He said the surgery is brutal, it is very difficult for patients to recover from, may make things worse and would not help the vertigo. He said he would get imaging every year to see if anything changes, but he would not operate on me. Since my heart was already in the first floor lobby at that time, it now dropped down into the parking garage under the building or whatever was down there. I was hoping to get minimally invasive surgery at this facility, but either I wasn’t a candidate or they don’t offer it, because minimally invasive surgery would not have been brutal. But it didn’t matter, because the doctor wasn’t going to operate on me anyway. I was rendered speechless and immediately thought to myself now what? Everything I thought I had planned out was suddenly yanked away. I had no plan of action and nowhere to turn. The one thing this neurosurgeon recommended was Botox to the back of my neck to stop the muscles from cramping. I have been offered Botox in the past for my chronic vestibular migraines, but refused. In any case, shortly after that, I left the appointment and headed out of the city to my home.

I got home and was thankful I had asked for the rest of the week off. I can’t cry, because I get vertigo when I cry, so I sat there, trying to think of what to do. And I didn’t do anything that day. Not in regards to the chiari. I don’t even remember most of the day, to be honest. The following day, I decided to return to the original neurosurgeon who had diagnosed me and recommended surgery. I wanted to talk to him about what had happened, and to again request an MRI of my lumbar spine to rule out tethered cord syndrome. And I decided to return to my ENT, who might be able to discuss Botox, even though I do not want Botox. I have since made appointments with both of these doctors to discuss these things, but I still don’t have any answers. And then there is the issue of a family member telling me I need to off myself simply because I’m trying to live. Make that make sense. Actually, don’t. Don’t try to make it make sense, because it doesn’t, and it never will.

I will try to update next month after my next appointment.

Stay kind everyone. It’s all we’ve got.