Category Archives: Guest Posts

My World of Music

Antonia Sinibaldi, SPINALpedia Ambassador

The first word that comes to mind about singing while on a ventilator is FRUSTRATION! It is frustrating because I have been paralyzed for most of my life. I’ve been singing since I was five years old but my voice has gone through constant changes. I think I finally understand my voice and what I need to do to sing properly and healthier.

In order to sing to the best of my ability, I need to adjust some of the settings on my ventilator, mainly the tidal volume and the pressure support. Sometimes I even need to use oxygen from the oxygen tank. I know what some of you are thinking, all this sounds like blah, blah, blah but sometimes it sounds like that to me too. Back to explaining, tidal volume is the force of air that goes into my lungs, my pressure support is how much work my ventilator is doing for me. When I increase the pressure support I can hold the notes longer. When I increase the tidal volume, I can belt better and it feels like there is less strain on my vocal cords.

Antonia performing her first solo last December.

Last summer I had a diaphragmatic pacemaker implanted surgically into my diaphragm.
Hopefully, this can help me one day get off this vent. I’m no where near coming off the vent
but singing with the diaphragmatic pacemaker with a certain ventilator mode used for weaning
makes singing a lot easier. I don’t have full use of my diaphragm but the pacemaker inside
stimulates the nerves so I can belt and hold the notes longer without having to adjust vent
settings. I’m in more control when I sing with the pacemaker and it feels so good. All of these
things is what I need to do to sing without straining my vocal cords.

I sing all the time to escape and express myself. I have done my research and I have met
doctors that have never seen a person sing on a ventilator. I feel very fortunate, happy and
blessed to be able to have the ability and gift of singing. Singing makes me feel FREE!

Guest Blogger: Mary Salisbury

It’s crazy how life can change in the blink of an eye. But most of us in the SCI community know this all too well.

Hi! I’m Mary.

In May 2017, I graduated from Temple University with a degree in Communications. In June, I started my first ‘big girl’ job at a public relations agency. And in July, I started looking for my first post-college apartment in Philadelphia. Everything was going according to plan.

Until suddenly it wasn’t.

My world was flipped upside down just when it felt like everything was falling into place, just when everything was moving in the right direction.

On July 10, I suffered a spinal infarct. It’s essentially a stroke, but not the kind you hear about every day. Spinal strokes are extremely rare, accounting for only about 1.25% of all strokes, according to the Brain and Spine Foundation. I had no idea what a spinal stroke was, nor did I realize this was the beginning of a new journey. My journey of living with a spinal cord injury.

I was in the hospital for three months. Through my window, I watched summer turn to fall, but deep down inside it didn’t feel like life was really moving outside the white, sterile walls of my hospital room. It felt like time was standing still. I felt like I was trapped in a bad dream. It finally hit me when I got home in October: This was real.

Now, it’s been a little over a year since my stroke, which left me with an incomplete injury around the C4/C5 level. It took me a while to accept my new reality. I felt like nothing truly happened to me. I wasn’t involved in a violent accident, nor did I suffer a catastrophic fall like some of my new friends. I was just living my life, felt a crack in my neck, and a few hours later my body stopped working. Gee, I thought, if I’m paralyzed, at least give me a story to tell! Of course, my injury was physically traumatic, just in a different kind of way. How it happened didn’t make it any less devastating, any less real, or my feelings any less valid. I see this now.

I’m telling my story because I’ve come to appreciate the stories of other SCI survivors that I meet and read about every day. These stories are important and inspiring. It’s comforting to know I’m not alone when I have a bad day. And we all have those days.

My journey is still just beginning. Over the past year, I’ve lost a lot, but I’ve gained a lot, too — mostly perspective about life and acceptance of who I am and where I’m going. I’ve developed faith in myself. I’ve felt the love of family, friends, and entire communities. The future is unclear and, honestly, sometimes a little scary. I have no idea if I’ll walk again or where my life is headed. But I’m full of hope and excited to find out.