“Look Up”

These past few weeks in silence I have personally been going through a turbulent life path both physically and mentally. 

Physically: My SMA has been taking its toll on me. I wrote briefly about it roughly two months ago, but it was too soon to tell. I mentioned how I think my SMA is progressing and fast forward to a few weeks later since that thought had formed. I am really beginning to think my SMA has reached the next stage. Personally, I didn’t think I would be in this current state until 3-5 years from now. Going from having the strength to push myself in a manual wheelchair, to then needing a power wheelchair because pushing myself became impossible, to now beginning to struggle with my neck support as you can imagine can affect ones life, but also their thoughts questioning their future. I personally have thought deeply about my future, especially with the knowledge of having to accept certain possibilities with the progression of my SMA as I get older. I personally hope to at least hit a certain milestone with my personal brand while I am still abled and mobiled. When I write a book I will go much more in depth and in detail, but I too want to highlight for those who personally know me. I am still me… just slightly declining with his strength. 9-10 times I just won’t show it or I try my best not to.

In addition to this I recently did have my 22nd Spinraza injection and I can say it has helped having me regain more strength than how I was feeling prior to receiving it. To give you a form of example: Mom had to assist me feeding me a few times and occasionally I have been needing assistance with getting water. “It’s the little things.”

Since the injection I have been going through discomfort being in a lot of pain where it is almost unbearable. And from someone who has had dozens and I mean dozens of back surgeries… I can tolerate pain. This pain isn’t of course as intense as my back surgeries, but it was becoming unbearable where it has been hard to sleep, recline my leg rest and back to stretch, and let alone take care of my professional commitments.

After a few weeks the pain is getting better. Today, I had seen my doctor getting a pain and steroid shot because I have strong reasons to believe my injection sight is inflamed and causing a pinched nerve. I have strong reasons to believe this because of my past life experiences being very similar to this one. I don’t worry much about pain or anything within time for it is all temporary. “It is ones ability to endure, persevere, and keep the faith within the process that determines ones outcome.”

Mentally: As you can imagine both my personal and professional life, especially while living with a progressive disability (SMA) will significantly take its toll on ones mental wellbeing. I am fortunate enough that I have a supportive circle always checking in on how I am doing and feeling. Mom, always asking if I need help with feeding myself. Twin (little sister), always asking about how my SMA has been and doing. Brother, doesn’t really ask, but his actions by talking about anything and everything is his way of keeping me presently here. Example: I could be in the room/ office working for hours and he’ll just come in and start talking or ask my opinion about something. It’s his way of saying “I care what you think” or “you need a distraction…” And I also have family and friends that too occasionally will check in. I of course have the contrary where I too am more of a listener than a talker. 1. It’s my way of allowing you to vent getting something off of your chest, being genuinely interested in what you have to share and talk about, and or listening more to get a better understanding with where I can help you the most when you ask or I know you need it. It’s my way of love. And 2. Some people are unconsciously aware most of the time and communicate best when talking about themselves. At the end of the day I want to be known for you having your own interpretation of me, but I hope to be primarily known for his love. Why? Because when you’re struggling you will reflect off of something I said, shared with you, how I made you feel, what I helped you with etc. In times where you are in need of strength you will reflect off of someone who you loved… not hated. And as a result when you find your way because you will. You will remember where you came from, how much you have overcame, and you now hold the ability to allow the opportunity helping someone else. This is again, a placed called love.

Back to the beginning, mentally I was going through a turbulent path. My grandmother recently passed and I still find myself having private emotional moments. My SMA definitely will affect one or anyone that feels something important slowly slipping away.

Personally wanting to do more, but you’re restricted by default. Professionally wanting to do much more, especially when you are surrounded by so many great opportunities and being slowed down tremendously. Feeling like you are going nowhere or making no progress isn’t the easiest helmet to carry. Everything can affect one mentally as you can imagine.

I found myself falling into a depressive state. Lower temper, choosing to ignore what I preach, flooding myself with more work just to keep my mind distracted. Despite feeling this way and giving no signs I was feeling this way. There was one thing I knew deep down I couldn’t let go of. And it was praying. I still woke up doing my daily gratitude prayer. I still prayed throughout the day. And I definitely prayed every night before going to bed. “Focus on me. Not the storm.” Is a saying I held very near. I was feeling like this for a few weeks. The one thing that actually helped me was expanding/ scaling creating music I had stored since last year back in September 16, 2023. The lyrics were one thing, but the music itself was exactly what I needed.

In the moment of going through this I held onto my faith even when the light to my world was beginning to dim. Despite how much I reflected off of past experiences of mine, even feeling like a complete failure feeling I wasn’t doing enough or making any progress. I began to scale posting more content on my music YouTube channel and I seen one video pass 100 views. Now, personally for me I don’t focus much on the numbers of views or subscribers because candidly that part of the equation is out of my control (to an extent). But as soon as I seen one of my newest songs pass 100 views within 24 hours of me posting it showed me something I wasn’t able to see prior to, which was I began to actually look at the date from when I started all of my YouTube channels and I actually started to see growth. Someone recently brought to my attention a great perspective. It was along the lines of “if you had the chance to speak in front of 100 people. I bet you would be nervous. Be proud of your growth!” Those words being no more than two sentences had shed light not only onto something I didn’t quite see before, but it recharged those batteries within. “God works in mysterious ways. Keep the faith. You are doing much better than you truly give yourself credit for.”

Much love,

~Victortheinspiration

*This post was inspired by my niece.*

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Living with Muscular Dystrophy: My Biggest Weakness & Strength | SMA:

https://youtu.be/Tb74tDvhmCI?si=aLJ1oWc36o8201Qi

Learn About SMA:

https://youtube.com/@thesmavictor

Breakthrough Mental Barriers:

https://youtube.com/@victortheinspiration

Listen To My Music:

https://youtube.com/@thevictorvisionary

WELLNESS DISCLAIMER:

Victortheinspiration's content is not intended to be a substitute for professional advice, diagnosis, or treatment. Always seek the advice of your mental health professional or other qualified health provider with any questions you may have regarding your current condition. Never disregard professional advice or delay in seeking it because of something you have heard in a video of Victortheinspiration, on social media, or shared within content you have consumed.