October Is Spina Bifida Awareness Month

 

October is Spina Bifida Awareness Month. It is a birth defect of the spine that I personally was born with. 

Spina Bifida is Latin for "open" or "split spine" which means that the spine did not fully develop during the development of the baby in the womb. This happens within the first 28 days of pregnancy.

Spina Bifida occurs within 1 or 2 of every 1,000 births within the United States. 

In further layman's terms, when a baby is born with Spina Bifida, there is a bump or a "bubble" that is seen on the back and inside of that bump is the malformed part of the spinal cord and vertebrae, and it is treated medically through surgery within the first days of the baby's life. But because of this surgery, this causes paralysis of the body. 

So the baby is physically disabled for all of its life. 

Most people do not know about Spina Bifida with the exception of two groups: those in the medical profession & someone who has a family member or close friend who was born with it. Otherwise, people are just unaware of it being in existence at all. 

There are various forms of Spina Bifida and therefore that comes with varying degrees of disability. Myelomeningocele is the most severe form of the birth defect. And that is what I personally have.

Spina Bifida is often referred to as "the snowflake condition" because no two people born with Spina Bifida have the same kinds of disability or challenges in life. 

I grew up as a child having mobility challenges by having to wear leg braces and using arm crutches. I have endured countless surgeries as I was growing. People born with Spina Bifida go through a lot of surgeries before they reach the age of 18. As I grew into adulthood, I now use a wheelchair all of the time for mobility. 

Because of the fact that Spina Bifida is not very well known, I have gone through a lot of interesting experiences when it comes to deal with people, particularly when it comes to their curiosity getting the best of them. 

I want to be very clear on a number of things: 

IT IS OKAY TO ASK QUESTIONS. Generally speaking, if you don't ask questions then you will never know. Never be afraid to ask questions.

With that being said, when people ask a question and it comes prefaced by things like "I don't mean to be rude, but..." 

Once you say something like that, we are going to automatically believe that you are about to be rude. STOP SAYING THAT! It's simple. Just ASK. 

Another thing to know is that Spina Bifida is NOT contagious. You cannot catch it by being around other people who have Spina Bifida.

Through my teenage years, I went through so many times where people avoided me because they had that irrational fear of getting what I had. It won't happen.

In decades prior there were so many cases where people with Spina Bifida were put into mental hospitals and asylums because for one, society didn't know how to deal with them and two, society did not want the condition to spread. 

Please stop asking about whether or not a person with Spina Bifida can have sexual relations or intercourse. Frankly it is none of your business. Save yourself the humiliation. But a majority of the time, the answer is YES.

If a person identifies as disabled, they are very much unlikely to be hired for employment. 

People with Spina Bifida have up to seven times more financial expenditures due to having to pay for medical equipment that they have to use throughout their entire life, and that ranges from wheelchairs to catheters and everything in between. 

People with Spina Bifida have bladder/bowel problem 100% of all cases. But adaptive medical equipment helps in those situations. 

The advances in medicine and in technology have come a long way in the efforts to making life with Spina Bifida a whole lot better. People with Spina Bifida actually live productive lives on their own. Independent living has been a very important part for me in my own life. 

Honestly, people with Spina Bifida live their lives similar to anyone else. 

Because of the fact that there are varying degrees of disability, some people don't even appear to be disabled. Spina Bifida is often called "a snowflake condition" because no two people are affected the same way. 

One thing that I will mention here is the fact that Spina Bifida affects all kinds of people in all kinds of life. 

American country musician Hank Williams Sr. was born with Spina Bifida as well as American rocker John Mellencamp - and that is something you probably were not aware of.

Mexican painter Frida Kahlo has also been suspected to have been born with Spina Bifida. 

I could go on and on and on listing people from world's history who either have been born with Spina Bifida or has been suspected but that would make for a much longer blog post. 

On the most personal of notes: 

I use a wheelchair to rely on mobility. I have paralysis from the knees down. I also have no feeling or sensation from the knees down. 

I have had dozens of surgeries throughout my lifetime. I had had countless of hospitalizations throughout my life. 

My teachers were terrified of me when I went through grade school. I found out later in life that the reason why they were so terrified of me was because they had never had a disabled student in their classroom before. 

In third grade I was bullied by a group of girls from my own class. And I would imagine the disability only made it worse. 

High school and college were more of the same. 

I survived it though. 

As an adult I realized that there will always be someone that I will come into contact with that won't know anything about my disability and I will have to explain and educate. 

And today, I do all the things that everyone else does in daily life. I just do them differently. 

I travel, I go out and enjoy things in life like live music, I speak several languages, I sing, I write. I do it all. I breathe in and breathe out and then repeat. 

I realize that this blog post is scattered but I did not want to forget anything that came to mind that I wanted to say. But I know that there will be things that I will forget.

As it is October, this blog post serves as a tool for awareness for Spina Bifida. The colored ribbons commonly used are either yellow or teal. 

As I write this, it is the 25th of October which is World Spina Bifida Day. I am wearing teal. 

I hope that this has been helpful for you. I hope that it creates an open space for you inside of your mind. Leave your questions in the comment section below if there is something that you would like to know about my life with Spina Bifida.

Five Years After The Fire

This definitely is a day that I will never forget for the rest of my life. I suffered an apartment fire on this day (the 18th of October) in 2018 and lost everything I had. 

A few days before the fire, I was having a conversation with one of the neighbors and we were discussing the time back in 2008 where I had left a relationship and had returned to Austin, Texas after living with my then girlfriend in the Massachusetts and Rhode Island area. The neighbor just could not understand how I was able to essentially get up and walk out the door and leave everything I owned behind. 

What I said in response was a foreshadow that nobody would see coming. I replied, "Think of it as losing everything in a fire." 

THE TRAUMATIC EXPERIENCE


Sometime in the middle of the night on October 17th, 2018, Austin Texas was asleep. It was the first time that the weather had turned colder at night, and it was raining. It was also the first time that people were turning on their heaters. 

I fell asleep on the couch and at some time between 3:30 and 4:00 AM, I was slowly waking up. I was coughing and I smelled something out the ordinary. As I laid upon the couch, I thought to myself "Why is any of the neighbors burning incense at this time of night? And why does this incense smell so bad?" 

Minutes later, I could hear someone outside screaming repetitiously. I recognized the voice of the neighbor who lived in the apartment next to me to the east and she was frantically screaming. Once I was awake enough to pay attention, I realized what she was saying. 

"Fire! Fire! Fire! Fire! Fire!" -- just over and over and over again. 

I got up from the couch and I saw a bright glow around the window. As I went to the window to investigate, I started to assume that perhaps the apartment complex on the other side of the fence had a fire. 

While I peeked through the blinds, I saw nothing but darkness. No flames or anything. Until one small ember began to fall in front of my eyes towards the ground. My head peeked upwards, and I realized that there was a fire and what I was smelling was not incense but smoke. My roof was engulfed with flames. 

My first action was to go over to the computer desk where I had a lot of things sitting there. I moved my arm in one swipe and gathered things up to put into the pockets of the hoodie that I was wearing: Keys, wallet, cell phone, and a few other skull rings that were there. 

My coughing started to intensify, and I knew that I soon had to escape. I reached to the floor to grab the footrests to attach them to my wheelchair but could not readily locate them in the dark. I moved towards the light switch, but something caught my attention. One of the vents located in the ceiling was glowing. I could see flames through the darkness that the attic was on fire. 

Needless to say, that the electricity was out, and the coughing was more and more frequent. That was when I decided to leave and try to escape whatever was raging above my head. 

I went to the front door and pressed my hands against it to see whether or not the door was hot and after finding it safe I opened the door to leave. 

The screen door was wide open though and the second I opened the door; I saw a massive swirling cloud of smoke rush into the apartment. 

As I went outside, I noticed to myself that the weather was dreary and cold, and still I knew that I had to get as far away from the building as possible. 

I moved towards the west and had planned to go around the building towards the other side where I knew people would be able to see where I was at. Unfortunately, as I moved closer to the neighboring apartment to the west, I could visibly see that the bulk of the fire was burning over that specific apartment unit. While I tried to cross the bridge, I had to stop and turn around and go east again, then move south towards the parking lot to ensure that I was far enough away from the burning building. I was no longer able to move west because of the soaring temperatures that came from the fire. 

It was the hottest thing I had ever experienced in my entire life. 

Other neighbors began to emerge from their homes and other people who realized something was wrong were also outside mingling with the others who just had escaped. 

The fire department showed up as well as several emergency vehicles and a few police officers. 

The fire department had warned everyone to get back because once they started to fight the fire, they warned that the amount of smoke was about to get intense. 

By then the fire had rolled over the roof and directly over the top of my apartment and I sat there in the dark and rain fearful of what was to come. 

Eventually a school bus was employed and many of the neighbors who had escaped (plus a few more who were just swallowed up in the mix) were transported to a high school gymnasium that was within the neighborhood. 

I thought it was strange that even more emergency services were already in the gym and set up. There was in a trauma team walking around talking with people. 

After sitting in that gym for what must have been at least an hour, I heard someone announce that we were heading back to the apartment complex. I thought "Why?? Nobody is there to open the doors to the main building. Our homes are on fire, and it is raining." 

I had no idea that the apartment manager at that time had showed up and opened the door to the main building. 

Both sides of the street were filled with emergency vehicles. All of them with their lights flashing. The street had been cut off at the intersection and nobody was able to get in or get out of the neighborhood. 

Of the eight apartment units that made up the building, one was vacant. And six people were in that gym but nobody knew where that seventh person was at, and it began to get a little scary to think of what might have happened to him. The very neighbor the west was not with us when we evacuated. 

We did find him sitting in the main building and everyone sighed in relief. Everyone who was living in the building that caught fire, had made it out of their units and were unharmed physically.

My sister would arrive shortly after that. The apartment manager saw that she was my emergency contact and called her. She came along with both of her children.

As the sun came up on that day of the 17th, I decided that I was going to write a post on social media. I wanted it to be direct but short. It was just enough to stir up dozens and dozens of people and just within two hours of me getting out the apartment to escape the fire, my cell phone was ringing off the hook from people who were concerned about me as I never wrote in the post that I was physically okay. I would edit that later, but the worry had set in for many. 

My BFF in Houston was the first person to actually call on the phone, who was not immediately family. Important to point out as she hated talking on the phone. She would much rather have a text message conversation than talk on the phone. Yet she wanted to hear it for herself that I was okay. I could not yet tell her what exactly happened as I did not know, and the fire department was still looking for hot spots. She mentioned that she would have been on her way to Austin to come pick me up and take me back to Houston, but she was unable to because she didn't have the gas. 

Several other people would call me throughout that morning and afternoon, but the amount of shock that I was in, I was not really prepared or able to talk about what just had happened because I felt that I honestly did not know. I was stuck between trying to explain to people who were calling me what was going on and having trouble staying on track with the fact that I need to act because I needed to find a place to stay now that I had lost my home. My sister did the very best that she could to help me stay on track until I was approached by the social services coordinator who works here at the apartment complex, stating that a hotel room had been booked for me for one night and it had been paid for. 

I had spoken to the American Red Cross, and they gave me a debit card with about $375 on it and made the suggestion that it was to be used so I can start taking that first step forward in life. After a pat on the back and three bottles of water, they wished me well. 

Towards the late afternoon, I was still answering messages on social media as the news had spread far and wide. People with the same questions, but I felt I had no answers. I was told that later on, I was in so much shock that there could not have been any possibility that I could have answered any questions at that time. 

Several people were asking about setting up a GoFundMe account. Many were saying that if I figured out what I needed then I could let them know because they would help. 

Eventually a local band formerly known as "The Mrs" would put together that GoFundMe account that would raise over $3600 of a $5000 goal. A large portion of that would go towards living a hotel room from week to week until I was able to find a more stable and temporary place to live. 

And while that was happening, I received a message from Mandy Prater, one of the band members of "The Mrs", checking to see if I was okay. 

Mandy asked if I had eaten anything and of course the answer was no, so she offered to bring me food. She honestly showed up with the food just in time because the main office building was about to close for the day, and I was going to be whisked away to a hotel and uncertain future. 

I was so thankful for her help. 

The next eight weeks, I had survived living in a hotel room paying for it week by week. I even made sure to go out every once in a while, to be seen in public by going to see live music. Literally anyone who had known me from the live music scene had heard about the fire and every time I went out and showed up, people would approach to ask if I was okay. I wanted to get away from the hotel and go back to enjoying live music like I had before. But I also felt that it was important for others to see me there so that they knew that I was okay.

WHAT HAPPENED SINCE THEN

Eight weeks of living in three different hotels, and I received a phone call from the apartment manager that a different apartment complex was willing to allow me a place to be while the apartment was to be rebuilt. It was in a different side of Austin. The place was built in the 1970's so there was no accessibility whatsoever. I was just thankful to have a place to stay where I could go back to paying monthly rent, rather than having to pay by the week. 

It was suggested at the time that it would take eight months to have the place rebuilt. But everyone was super skeptical about that time frame. It took thirteen months. 

During that time, I was able to use whatever donations I had left from either the GoFundMe or from other sources to survive for over a year. But like I said, the apartment was not wheelchair friendly or accessible. 

It was so bad that I could not even get the wheelchair inside of the bathroom. If ever I needed to be in there, I would have to push the wheelchair against the door frame, lock the brakes, and then jump towards the bathtub or the toilet and hope I did not slip or miss. 

I was on the seventh floor and thankful that the door led to an elevator. 

For about a month, I slept on an air mattress that I bought. I hardly had any clothes to wear. No furniture or anything. No computer or Internet. But soon those things would fall into place. 

Again, I must mention that Mandy Prater stepped up again to help and she put out the call to everyone she knew to gather the things that I made a list of what I was needing at that time. 

Others volunteered a lot to help out. Including the Los Angeles based metal band, Raven Black. There were a lot of strangers from that band's community that I ended up being friends with online.

Less than a year of being in that temporary residence, life began to fall apart once again. This time, it was my health. 

I had finally been given a bed, a TV, some furniture and what not. The bed would be the beginning of the decline in health as it was very, very hard and difficult to sleep in. The mattress was rough, but I tried very hard not to complain about it because it was better than nothing. I wanted to be grateful and appreciative of all the things that I did come to have even if it was from the generosity of others. 

It led me down the path of getting so sick that I ended up in the hospital in mid-November 2019. 

A few days into that hospitalization, I received a phone call from family that the apartment had been rebuilt and I was able to move back in. This news was bittersweet as I had been waiting over a year for that call, but I felt crushed and defeated because I was lying in a hospital bed and not having any idea when I would be able to be discharged. 

During that time, members of my family came to Texas to gather up what little I had to move it back to the apartment. My older brother went above and beyond to help get things that I really needed such as a brand-new bed and a computer desk and put it all together and put it in place so that I would have it there when I got out of the hospital. 

I would be dealing with that hellacious experience until February 2020. It was fatal and it would have killed me had I not gone to the hospital. The experience took so much out of me that life shifted and changed for me as far as physical health was concerned. My mental health because of the fire was completely traumatized and damaged. And there I was lying in a hospital bed, almost dead. 

Going to see live music was not a priority at that point when I finally returned to the apartment complex after the fire. 

I still went out though. Just less than two weeks, I went to see "The Mrs" and then a few days later I saw Britny Lobas play with the band she was in at the time. That had major consequences to pay for. From those two times that I went out I realized for sure that I would not be able to go out anymore until I had fully recovered from literally everything that I had gone through. 

Less than a month later: COVID-19. 

LIFE SINCE COVID-19

The world was affected by the pandemic. Literally everyone living in it at the time had troubles and hardships while trying to live their life during shutdowns and quarantines and guidelines and everything else that went along with it. 

Eventually, I would discover live streaming. Musicians and entertainers were looking for a way to keep making a living and live streaming on social media was the beginning of it all, until most of them found the Twitch platform. 

From Twitch, I would be able to watch and listen to all kinds of people playing music. It would be the only source of having a social life for me. And I have met some incredible people on Twitch and some amazing talent worldwide!! 

From morning until night, a person could always rely on finding someone doing a live stream that fit their interests. 

And that's what I would do for such a long time because there was no place to go. Sitting in front of a computer screen and absorbing all the music being played. 

Even that would turn into more problems as I sat there without moving for hours. Having Spina Bifida has been difficult from birth, not having any sensation of the lower parts of my body. And not moving around in my wheelchair when I needed to. It turned into yet another visit to the hospital in the summer of 2022 and again, my health was so poor that my condition was nearly fatal... again. The poor choices that I made to sit there for hours and hours led to a catastrophic consequence. 

I don't think that my body fully recovered 100% from the time back in late 2019. The wound that I deal with today still remains and isn't showing signs of progression or healing at all. Thankfully though it hasn't gotten any worse. 

Members of my family have stated a few times that the last five years (health wise) have been a complete nightmare. And it all started with the fire followed by one event after another after another. 

Since COVID-19, I haven't been well. Physically, mentally, emotionally. My BFF who wanted to rescue me and bring me to Houston with her, passed away after beating breast cancer but being diagnosed with a brain tumor. Another died while I was in the hospital during the most recent stay with no word of her ever being sick and I never had the chance to speak to her one more time before she passed. And I have not been able to see any people that I love and cherish the most in years.

I have been to just a handful of shows locally. I have not traveled outside of Austin. But it seems like those days of going out for live music five times a week or more are over. Now I just consume music online. 

The past five years can definitely be considered a shit show. I try so hard to think of the positives and adore the fact that I still have those people in my heart who still have my back and are always in my corner. I love you very much. 

Will time heal all wounds? I say: That remains to be seen, and so as always - STAY TUNED. 



Below are some images that were found of the fire and immediately afterward: