(Antonia Sinibaldi is a regular contributor and ambassador for SPINALpedia. She’s also an author, singer and has been a vent-dependent quadriplegic since age 4)
All of my life I have been paralyzed. Enough of this world knows most of this story. My case has-been manipulated over the years to the point where I have become a jack of all trades master of some in order to fix as much as I can with disability.
This article is about being on a ventilator from the age of two because of a spinal cord injury. My favorite will always be anything creative especially music. Sometimes being creative is not enough. One needs to be academic in order to accomplish something.
The spinal cord injury I had encountered when I was two years old was at the cervical region of the spine. The cervical spine contains the levels of C1- C8. Some websites say C8 others say C7. All I know is I broke my entire neck when I was two. I have been dealing with the repercussions of the accident thought out my life.
Mechanical ventilation is a very poorly understood field. The cervical spine is also the most crucial and poorly understood area of the spine which involves in breathing and movement. We are all living in Covid world when mechanical ventilation is the new topic in every location. Not enough able-bodied people are getting a Covid vaccine. Herd immunity is a real thing but society as a whole is not taking it seriously. The following quote explains what herd immunity means:
“(YALE: The percentage of the population that needs to be immune to attain herd immunity varies by disease and how contagious that disease is. Measles, for example, spreads so easily that an estimated 95% of a population needs to be vaccinated to achieve herd immunity. In turn, the remaining 5% have protection because, at 95% coverage, measles will no longer spread. For polio, the threshold is about 80%).”
I have luckily have never gotten the flu because enough people around me had received the flu shot as well as getting the vaccine myself. Recently I became fully vaccinated because not enough of a population are getting a Covid vaccine. I had no choice in order to protect myself, I had to get it.
The reaction this body of mine had was not as bad as it could have been but not as pleasant as I hoped. This body because of how young it was when I got hurt, it developed very heightened. For most of my life it was spasticity that was overpowering. The first reaction I had was a neurological response that able bodied people sometimes get confused with other types
My nervous system is heightened meaning over working. The minute the first vaccine went into my right deltoid muscle, my body reacted. It made me slightly spasm than when the body relaxed, the pain that came from the shoulder radiated from the arm to the neck to my throat. I don’t fully know which part of the cervical spine controls all three of those locations but it was definitely a neurological response.
The pain scale that people are asked goes between one and ten. There should be a pain scale for the different types of pain and not just a general idea. That is one of the reason why able-bodied people are refusing to get the vaccine because of the side effects. The pain that came from the first vaccine was a neurological reaction and not a viral pain. As this body ages I have experience so much pain in my life that I would rate the first vaccine reaction as stabbing from the arm to the neck to the head and back at number six or seven.
The pain itself was not the scary part. If I did not drink electrolytes it made the vent very hard to pull in after three hours from taking the vaccine. Growing up I did not fully understand what was happening to me. I had to teach myself everything and learn the hard way.
People don’t realize normal breathing, people talk on the exhalation. This body because of how young it was when I got intubated through the tracheotomy that myself and others, we do everything on the inhalation. That is the biggest reason why weaning of the vent has always been difficult even with my diaphragmatic pacemaker. The second vaccine I felt more of a virus side effects with some neurological.
The aches as if I had a virus of some sort and once again weak breathing. For both vaccines I needed to raise the oxygen tank and sometimes change the settings on the vent. It is hard to explain the different types of aches with the different types of neurological pain because very few people are as observant as I am.
Those who have taken the first vaccine and refuse to get the second vaccine because of the side effects do not realize the extent of the different types of pain. They are mentally paralyzed and can’t distinguish which pain is what and refuse to get it. The assumption that vent users have it easier is inaccurate. It has driven me mad throughout my life and I did not always handle it well.
I worked so hard to get where I am today. I prepped my immune system by eating certain health supplements for immunity in order to avoid getting a serious reaction to both the vaccines. Able bodied people need to get vaccinated in order to protect the vulnerable. By prepping my immune system my body reacted not as bad as it could have been.
If enough able bodied people received a Covid vaccine of some sort then myself and others wouldn’t have to take it. It is scary when the vent is harder to initiate. It is frustrated and used to be lonely being raised with a ventilator. In my 24 years on this planet almost 22 years paralyzed I have aged in so many years. That is why I call myself jack of all trades master of some. In many ways this life has physically and mentally aged me. Being the only singer who uses a ventilator is a blessing but it took a while to know how to properly use it.
My gift of singing is my escape from my disability, but not enough people take me seriously. I hope whoever is reading this more and more people will get vaccinated and treat people who use ventilators better. Most importantly I want to fix , improve and represent pediatric spinal cord injury and pediatric mechanical ventilation.