My Backbone's Been Screaming for Help
Since childhood, I’ve always had spine issues. Somehow the ball was dropped in 2009 when I was 18 years old. I spoke up to providers about my back, and it wasn’t properly addressed. I have always advocated for myself, but it felt like I wasn’t being heard. ‘Lose weight, that will help’. – Okay, I can do that. I’ve lost over 120 pounds, and have kept the weight off for almost 4 years. The pain is still there.
‘Do physical therapy, and work with a personal trainer’. – No problem. I’ve been doing PT for many years to address my spine; the pain is still there, and continuing to get worse.
“Try these medications, nerve blocks, epidurals, dietary changes, and other alternative treatment approaches. This should help.’ – Okay cool. I’ve done them all and I’m still in the same situation…
“Go to counseling and learn how to cope with it.” – I completely agree counseling is a great resource, and I am currently working with a therapist. However, we are still dodging around the issue.
I wonder if doctors believe patients don’t have backbones. I’m not talking about a literal backbone. The idiom definition of not having a backbone is someone who doesn’t stand up for themselves. They may be viewed as a pushover, and choose to not use their voice to speak up for themselves. When I looked up this idiom on urbandictionary.com, their top definition helped me understand the saying further. “A true example of a coward, who often backs out of things, and rarely shows they have any balls”.
At times, I felt like doctors viewed me as immature and ignorant. My medical records label me as ‘disabled’ but that doesn’t take away my intelligence. I knew something was not right when I was not responding to treatments. I live by the motto “losing is not an option.” To me, this phrase means to keep going and don’t give up, even when it’s really hard. I don’t have a medical degree, but I know my body. If my gut is screaming that something isn’t right then I’m going to listen and speak up. Yes, I have physical disabilities, but my mind is still sharp. I have a college degree, and 90% of a masters degree. Not for nothing, you have to have some smarts to be accepted into graduate school. I may be unable to work, but I’m still educated in the field that I both worked in and went to school for: counseling, art therapy, case management, mental health, crisis management, disability advocacy, and working in hospital settings. These are some of the many areas I have both excelled in academically and in the field.
For nine years, I continued to voice my concerns, but I still wasn’t heard. While there are countless images of my spine, the results were unfortunately never shown to me. I’ve read the reports, but NEVER saw what my spine looked like. The only way I got answers was if I hounded the doctors to speak to me. I am not someone who gives up easily. My gut kept telling me that something was not right. I’m grateful I listened to my instincts.
IS THAT MY BACK?!
I was horrified when I saw what my spine looked like on film. I couldn’t stop staring at the x-ray. ‘Holy shit that’s what my spine looks like?!’
The vertebrates in my lower back aren’t aligned. Two of my vertebrates look like they are rubbing and sitting on each other. One vertebrae looks like it’s forcing itself out of my spine. It’s crystal clear my spine is not stable. Moreover, there are nerves that are entrapped in the same area where the two vertebrae are piled onto each other. My lower back is a hot mess. I met with two spine surgeons, both who specialize in spine abnormalities; Each one helped me understand how the problem is structural. It’s not my fault that I learned at the age of 27 that I was born with a spine malformation. I was not educated properly about all the components affecting my spine, until I met with each spine specialist. I gained the proper knowledge I needed to understand the full situation with my spine. I was unaware of the severity of my spine’s instability and that there’s been a nerve root entrapment since childhood. A fusion is necessary; this will only enhance my strength further. Between a fusion, and fixing the nerve root entrapment, there are high hopes of improvement with leg pain, functioning, and quality of life.
Someone Finally Listened
When I met with the second surgeon, he made a statement that really struck me. “These are simple problems, and it is clear on imaging. If only they’d listened to you”.
The satisfaction arising when I hear him say this reminds me that my hard work paid off; always speak up for yourself, and trust your gut. ‘Wait, wait wait… was I just validated?!?’
“IS THIS REAL LIFE?!, DID HE REALLY JUST SAY THAT?!?!!”
My friend was in the room with me, and I asked her more than 15 times on our way home if he actually stated that; she confirmed he did. I made sure to treat her to a coffee for putting up with my non stop harassment! Overall, I deeply appreciated these surgeons taking the time to provide their clinical opinions regarding my case. I’m officially in good hands.
So Much Beauty, in an Xray
I felt inspired when I saw my X-ray. I wanted to bring this image to life. There were so many shapes and I was mesmerized by the colors in that picture. I could visualize how I would incorporate texture, depth, shadow. There was so much beauty in my spinal structure. Once the resident left the room to get the doctor, I grabbed my phone, and took multiple photos of my x-ray. This art piece was already coming together in my head, and I hadn’t even left the exam room. I can feel the pain of my spine just by looking at it; it’s screaming for help. It’s been screaming for assistance for so long, but no one was listening to what it had to say. There’s so much strength in the structure, but extra support is necessary. You can see how restricted the lumbar is in terms of movement. It doesn’t have the freedom to align the way it should. Most of my spine is holding strong, but you can see the wear and tear. The particular support my spine needs is something I can’t personally provide; I’m helpless, because the problem is structural.
My spine has felt damaged and hurt; doctors whom were trusted had failed to do their jobs properly. These providers were putting bandages on the problems, rather than fixing the problem. I was so angry. ‘WHY DIDN’T ANYONE LISTEN?!?!’
The red shades in the background signify the red flags saying, ‘ STOP, AND LOOK! The problem is right in front of you. It symbolizes the hurtful, hateful, and hostile emotions. These emotions can be washed away. The past is in the past, and it’s time to move forward.
I can look at my spine, and state that I feel fulfilled. I feel free; my voice was heard, and my back will get the proper help it needs. I’m a visual person, so not being able to see what my spine has looked like for years, had made me feel like I was left in the dark. Damn my spine is strong for all of the shenanigans it has had to put up with. I am relieved knowing there’s an explanation to why my spine is the way it is. It all makes sense now. Looking at my spine structure provided me reassurance. My gut was right this entire time; something really was wrong.
Painting my spine, helped me understand my anatomy; I was born this way. Is my spine deformed? Technically yes, however I don’t see it like that. I view my spine as unique, just like my personality. It makes me who I am today. There is a lot more strength in me that I must recognize. My quirky spine has quite a powerful voice, and I wouldn’t be who I am without it. It’s quite clear I have a backbone, one that is quite loud and vibrant. My spine is one of a kind, and it has helped enhance my backbone; my backbone gave me the courage to use my voice, and speak up until I was heard.