Life with Guilin Barrè
It all started one morning before I had to go to work. At the time I was working second shift. When I woke up it was like 10am, I felt like my body was beaten in my sleep. I kinda shook it off because I’ve been working six days a week with not much rest because I was in the process of getting Beat Designers off the ground as well. For the next the mornings I would wake up so fatigued, almost as if I had ran a 100 meter dash. My body was hurting more and more, but that was just the very beginning of my life with Guilin Barrè.
Keep in mind, I was still going to work as if nothing was going wrong with me. As I would walk around my job I kept tripping on my own feet. I didn’t notice that I didn’t have the energy nor strength to pick my feet up high enough to keep from tripping myself up. A day went bye same painful early morning routine. This time the pain was getting worse from head to toe and I was more fatigued. I still went to work thinking to myself “damn I need to take a few days off, I’m way to tiered”. But I still went to work anyways just redlining myself.
With the snap of a finger I then noticed I couldn’t move my lips. I was a supervisor at my job so I had to use a radio to communicate across the plant. That was so difficult to do, as a matter of fact I couldn’t talk in my meetings that day due to that issue. When lunch came around (smh) I couldn’t even eat. Try to chew without moving your lips or facial muscles that will allow you to even get the food in your mouth. That was literally impossible. I couldn’t drink through a straw because that would take more facial muscles to do something like that. My body was slowly shutting down as if I was dying slowly.
Hopefully you watched the video because that helped save a lot of time trying to explain how something like that can happen. I still don’t know the root cause of me getting it, but I still have lingering effects and that was in 2015. It is now 2022.
As soon as I got into the hospital not even 30 minutes later they started a spinal tap on me to figure out what caused the Guilin Barrè. The only problem with that was, they had to do it three different times in two different positions. They couldn’t get the spinal fluid out the first two attempts. When the doctors finally finished I was then told to lay still for one hour. You bet I was nervous because I didn’t want to be paralyzed or something. Not long after that hour was up the doctors came back in the room and told me I was going to be admitted for two weeks.
The morning I woke up from such a long and painful night with the doctors my room phone rang. I knew I didn’t give anyone my room number because no one knew I was in there other than my wife at the time. When I answered my neurologist told me what was next to come. He told me I was going to need plasmapheresis and that I also was going to need a catheter. New to me, I couldn’t picture anything he was saying so I just went with it. About one hour later a surgeon and a nurse came into my room asking me if I was ready for the insertion of the catheter. I was like, uh right now? He was like yeah. I said ok I guess let’s get it over with then. I thought it was going in my penis. Nope! He laughed and said no it’s going in your jugular vein straight to your heart. I was very nervous of course, but I again just went with it. Now, let me inform you I was not put to sleep when this happened. I was wide awake and alert the entire time. I was later hooked up to the machine to start my plasma process which lasted the entire two weeks I was admitted. I saw and felt everything, my body was getting colder as my blood was leaving my body as if I was dying or dead. After it was over my body went into a light shock which made me vomit. I toughened it out.
Then entire time I spent in that hospital I was on morphine and it just took the edge of the pain off. laying in that bed was extremely difficult, I couldn’t sleep well at all the tossing and turning the migraines. You know when you take chicken quarters out of the styrofoam pack and the base of the chicken looks flat? Well that’s how my body felt if I didn’t turn over after too long. The nurses were amazing though. I was labeled as a fall patient because I could barely walk. At that point I kinda understood what would bring a person to ending themselves. I didn’t want to do it, I just understood that part from what I was going through. Thank you Yahweh you kept me so strong.
Times up! I was being released due to my recovery status. Let’s not get ahead of ourselves, a had a long and difficult recovery road ahead of me. If I pushed myself too hard too early I could relapse is what the doctors informed me. That put me on high alert. It was around Christmas time and my wife at the time asked me what would I like to do, where would I like to go? However she did say that we should stay close just in case. I knew that she wanted to do more than that. I suggested that we go to Atlanta to see her boys. We went and on the way back we stopped off in Mississippi. The night before we headed back home we went to the movies. As we were walking up the steps to get to our seats, I realized I didn’t not have the strength to make it past the second row. ALERT ALERT ALERT 🚨🚨🚨!!! I got scared, but I didn’t show it nor did I say anything. I just said let’s just sit here. It was difficult to get up out the seat not obviously though.
We had to reschedule my doctors appointment due to our tardy road travel to the next day. Well, the next day arrived. I woke up that morning thinking that my one year old son was sleep on top of my blanket between my knees. I looked to see him laying there cause he felt heavy and I couldn’t move my legs due to the blanket holding my legs down. In reality he was not sleeping between my knees. As a matter of fact nothing was there at all. I then discovered that I woke up paralyzed from the waste down. The process of getting to the car in the garage was a miracle. I was wondering how I was going to make it to the appointment. I had to get there on my hands and knees because I was too heavy for my wife at the time to carry. Besides, she had to get the children. After all that work getting to the car, the car wouldn’t turn on because I never shut the door all the way when I got out of it the night before. I guess I didn’t have the strength I thought I had to even shut the door all the way. I had no memory of it actually.
At this point I was admitted back into the hospital for another two weeks. But this time I brought my Xbox lol. I was so bored and in pain the last time at least this time I would be in pain but not bored. I felt like an experienced vet with this at this point. I knew the ropes lol. The nurses loved me they was like wow you’re taking this like a champ. I can honestly say, at this point I was much happier that I didn’t have to get another catheter implanted in me for plasmapheresis due to it being a unsuccessful attempt. So they put me on steroids and more morphine. They were puzzled for real. In the end of my hospital stay I successfully went home without needing to return back a third time.
I never knew I would be entering the doors to physical therapy. Actually I couldn’t open the door lol. I was kind nervous because I didn’t know what was ahead of me at this point, all I know was work had to get done. Honestly I can’t remember if I had to go to speech therapy one or twice a week. After all since I couldn’t move 85-90% of my face it was greatly needed. My physical therapy lasted 6 months and my speech therapy lasted seven years. At times I could still use the speech therapy but I’m good. On a side note two months after I was released from physical therapy, I was shot and had to go right back 🤦🏽♂️.
While I wasn’t at physical and speech therapy I was home bound. My daughter was going on three years old and she wanted me to get better so bad. She was my motivation to get back up and running for lack of better words. I didn’t want to die and leave her and my unborn son out here alone to figure life out without me. So i spent everyday in my fourth bed room which was my man cave/studio just figuring out my sound and getting my brand off the ground. By the time I realized it I had an instrumental album on every major and some minor streaming platforms titled “Beat Designers LicenseTo Bang Out Instrumentals”. It has nineteen tracks on it. At the same time I was able to produce eighty six tracks on my website beatdesigners.com. Even though I was in pain all day every day and fatigued at the same time I got a lot done with my baby girl on my lap watching me do it all.
I know Yahweh and Yahwehshi loves me, because after everything I went through in a total of sixteen months he still allowed me to be a father to my children and a hardworking man to keep everything a float. I pray the Beat Designers take my children and their children up the wealthy ladder. Now I know money isn’t everything, however it will create them more time to be with their families and do more thing with their time. So never give up even if you think everything else around you did. I want this post to motivate all of Israelites across all four corners of the earth. Shalom 👑🕎.