My name is Rafael Garcia and I have a condition called Spinal Muscular Atrophy which comes with many hardships, and challenges. In these blogs I'll talk about different subjects, and how they got me to be the person I am today. And how the Freedom Bed changed my life.
Today I wanted to talk with you about a very hard subject that has always bothered me in my life, and that subject is pain. Pain is a great friend of mine that has knocked me down more times than I could ever count. Whether it’s physically, mentally or emotionally, pain has always been a part of my life. But, interestingly enough, it’s something that helped me understand a lot about how tough life can be.
I first started to get pain as a child due to scoliosis as well as muscle contractures in my knees and hips. And due to the condition I faced, SMA (Spinal Muscular Atrophy) I knew even at a young age it wasn’t something that was just going to disappear.
At the age of 11 I had what's called a spinal fusion surgery where they place Harrington Rods in the spine and screw them in place to straighten out the spine, fusing it into one complete bone. It sounds very painful, because it is. And it was only two years after the surgery I was diagnosed with chronic pain syndrome.
Shortly after the diagnosis I started to suffer from Depression and high levels of Anxiety. I remember when I first started battling these issues it took it's toll on me, and pretty soon, my health.
Due to the intense amounts of pain and trials I was facing, I found myself in the emergency room with numerous respiratory infections. Infections such as bronchitis, sinus infections, and pneumonia. I remember battling these infections and being in pain as well as crying every night and praying for God just to take me. I would say “why, why do I have to go through this. Why can't I just be a kid.”
It was tough I couldn’t play outside or be in my wheelchair to sit with my family. And pretty soon I found myself confined to a basic standard hospital bed. I remember waking up every morning and just laying there, bed ridden, not being able to do anything. It was hard, because I found myself not being who I was.
I was just simply a shell of myself. I wasn't myself at all and I can remember lashing out at the people who cared about me the most and being so angry all the time. I was angry at everyone - my family, my friends, myself, and even God. I remember asking him, “why did you put me in this situation, why do I have to suffer like this, why do I have to always be in this bed why can't I just be like everyone else, what do you have against me.” And pretty soon it didn't take long for him to answer me. I remember praying, and just trying to get a hold of myself one morning. I didn't know what the day was going to be like, but I knew it was raining outside and I remember just feeling this calmness brushing over me. And I just knew that it was the big man upstairs telling me, it’s going to be ok.
I knew that I was in for a long road, but it was going to be worth it. I found myself doing research and learning more, and more about my disease. I soon found out that my condition was a little bit like a very dangerous animal. It can be very dangerous and even kill you if you let it, but if you choose to understand it and learn about it and work with it, you can work together as a team to make a great foundation of friendship and understanding.
After I realized that, I knew that I was starting to get a hold of the emotional and spiritual pain that I was suffering and going through.
Within time I started to become myself again even from a bed. I would smile even if I didn’t want to I would joke around, even if people weren’t in the mood and I would always try to be the positive light I needed myself to be even if at times I didn't want to. But I knew if it would help others that's all that mattered.
I focused on working hard whether it be in home school, Physical or Occupational therapy, or simply going to my doctor's appointments and being a good patient. But there was always something that was missing and that was relief. Physically when it came to pain I had no relief. As time passed and I grew older, the pain got worse. I would say that on a scale from a 1 to a 10, I remember being at a 10 everyday. I just finally accepted the fact that I would always have pain and it wasn't going anywhere.
No physical therapist and doctor could really help me with my pain. It, it became frustrating. But in the mist of the struggle and pain I just knew there was a light at the end of all the madness. That light was my nephew being born! I knew when he came into the world I needed to fight harder than ever before in my life.
As I held him in my arms for the very first time I knew that all the pain and hardships are worth it. I wanted to show him that his uncle can not only be strong, but help others. I remember going home to get some rest that night when my bed was just not comfortable anymore. And so started the “Journey to the Freedom Bed”.
I remember getting frustrated with the very bed I had at the time. My mom would need to be repositioning my body every hour, and needless to say that none of us would ever get sleep. It was such a difficult time for me. I remember thinking to myself “Gosh what's gonna happen next.”
I think we sometimes face these challenges, because we are on our way to greatness. I sat down with my mom one day and we just had to do research on things that could help me. A few days of researching different beds was very hard, because there wasn't anything different! It was the same hospital beds. Head and legs go up and down nothing else. I finally got tired and told not just my mom, but my whole family, pain or not, I'm done being in bed.
I was starting college and I just needed to be myself. So every day I would get up at 6 am and from 6 in the morning to 9 at night I was pushing my body in a wheelchair. I was working as hard as I could. I would be at school and being in so much pain my body would tremble. I remember thinking the sacrifice is gonna be worth it.
As my first semester was coming to an end I got into a Car accident. I ended up with multiple muscle contusions and a large hairline fracture of my spine. I was on bed rest for six months.
I was rehabbing my injuries when my mom showed me the Freedom Bed. I was surprised to see a bed that could actually reposition me! I told her I wanted it, but since I was ageing out of my previous insurance I wanted to wait.
I was just healing when I got an opportunity to do public speaking for a year. I traveled throughout the state of Texas advocating for young adults with ‘Special Needs’. It was a great experience and I found that it was something I wanna do as a career. As soon as I started I had to stop, due to pain. It was a good, but frustrating year for me.
I had just turned 22 when I got approval for my Freedom Bed. I got it in January. It was a very weird day that day. I remember waking up with the same pain and getting in my wheelchair so my family and I could get ready for the delivery.
It was on that day Mr. Toby Brown Delivered the bed and showed me how to use it properly. I was amazed at how much you could do with it. He showed me the features like the automatic rotation, and the different options of remote controls such as the regular remote or the tap remote.
He also told me that it could also be used through voice control with the proper add on. Mr. Brown told me not to be nervous and that even though it would take some time to get use to it, it would benefit me in the long run. I remember looking at my chair and saying “but I can’t run!” I mean at least I got a chuckle out of him!
Later that night I remember falling asleep faster than anytime in my life ever. I didn't know how tired I truly was until that night.
When I got up next morning, that’s where my life truly changed. As I woke up and stretched my 77 pound SMA body, I noticed that something was missing. I wasn’t in pain! The pain I had been going through for years was gone.
I never knew how much emotion I had carried with me over the years, but that morning is when it all finally hit me. I cried out of relief, joy, and peace. All the pain, suffering, and all the worst days were truly behind me. I had a life now, I could finally be myself.
For the first time in my life I was more than happy - I was excited! Excited for the new life ahead of me. It only took me two days to be back in my wheelchair full time. All my pain medicine was no longer being used. I was being the man I wanted to be. I was having meals in my dining room. I was going to family outings, and not having to leave 15 minutes into it. I was spending full days in my wheelchair with no pain.
This is just one of the many stories I have and hope you guys join me for this journey. This is Rafael Garcia ‘signing off’ for now. And remember: