I’m glad you’re taking a moment to come here and check out my new endeavor. I never-ever in a million years saw myself doing anything like this, but here I am. I have been through my fair share of things in life, but I feel like doing this blog is my new calling. For some of you, you had no idea what I’ve been dealing with, that’s because my ego and my pride were in the way. I’m not one who seeks attention or allows himself to be vulnerable, in fact, I’m the complete opposite and try to live life silently making the least amount of noise as possible. I wish I could cover everything I want to in this post, but I’m going to keep it semi-short, so everyone sticks around.
The last 10+ years of my life have been challenging to say the least. It all started around 2009-ish, while I was on my second deployment, on a mission in Iraq, when I suddenly started getting bright flashes in my eyes. We would only travel at night, and it felt like someone had just shinned a flashlight in my eyes. The only problem was, it lasted for many days. At the same time, I was noticing tingling in my legs. I wasn’t able to put two-and-two together, so I did what all military members do, drink water and kept moving on. In the Army, they didn’t promote going to the doctor, in fact, it is the complete opposite. You would be degraded and called “sick call ranger” by your peers if you visited the doctor frequently, and I wasn’t trying to have that label.
Now, let’s fast forward to 2012, I was two months discharged from the Army, and I was in a wheelchair being wheeled into the ER because my legs were so heavy. They were in so much pain, my brain/memory were severely malfunctioning too, it was so hard to think or remember anything. When I arrived at the ER, they gave me morphine, and I was given my very first MRI. After the MRI was done, I was wheeled back into my room, and the doctor came in and said that I needed to follow up with a neurologist immediately.
A couple weeks later, there I was, only 24 years old sitting across the desk from a neurologist that was about to deliver the news to me. He said, “Brandon, I am sorry to tell you this, but you have Multiple Scleroses”. While I finally had the answers as to why my legs felt like they were encased in concrete, and my thoughts and memories kept escaping me when I needed them, I couldn’t help the overwhelming desperation and despair that I felt. I had a diagnosis to be mad at, I finally had the answers, but the truth didn’t set me free, it instead drug me down into a deep, deep depression for many years. In the Army, I had been to war before, and I knew getting this diagnosis meant I would be at war the rest of my life. My hope was gone.
For the first several years after I was diagnosed, I didn’t do anything about my MS. I thought that denial would protect me from having to face it, unfortunately this denial is my biggest regret. My neurologist would say, “Brandon, you have many more lesions, are you sure you’re doing okay?” I would always respond with “Yes, I am doing fine,” because I knew this answer meant that I could continue to not face my illness or my neurologist and his probing questions for another year.
In 2017-2018, I had a severe relapse with lesions everywhere, that I knew I had to finally face my MS. I was resentful, because MS had stolen so much from me over the years, and that resentment and unwillingness to face the truth caused the MS to continue progressing. I avoided my MS for so long, that is my biggest regret. Remember, MS has one goal in life and that is to disable us, that can be very hard to accept if you’re anything like me. My journey with MS isn’t about an inspirational story of hope, instead it is a lesson in humility, a lesson about loss, and a chance for others to make better choices and decisions when they are diagnosed with MS.
First and foremost, avoiding MS will do nothing good for you, I’ve done that. I was tired and didn’t feel like fighting, but I should have and so should you. I knew how, and I had the ability, but I made a decision not to, and that is a mistake others shouldn’t make. My job isn’t to tell you to change your diet, do more exercise, or get on a Disease Modifying Therapy (DMT.) Instead, my job is to tell you that I didn’t do any of these things, and that was my biggest mistake. The goal is to stop or slow down the progression of this disease, remember that, and do the work to put your health first. Perhaps if you start early enough, you may have a better quality of life. The longer we are here, spreading awareness, talking about our illness, and sharing information with others, the more hope we have. Sometimes hope is the only thing we can hold onto, as I’m certain we all can’t wait for the day a cure is found. My hope is that a cure is found within our lifetime, so our kids/grandkids will live in a world free of MS, I think we can all agree about this.
Early on I didn’t believe in hope, so I didn’t fight, but I see now that there is hope. I fight every second of every day, and I will continue to fight until there is an answer. I trust that there is an answer, and I hope that we live long enough to find it.
No one is capable of being prepared for a Multiple Sclerosis diagnosis, so take some time to work through your diagnosis. Be mad, do your research, be sad, but when you’re ready, reach out to the MS community and others living with MS. Don’t live in isolation like I did for years, the power of our MS community is incredible and has the ability to be overwhelmingly empowering. Yes, you can always talk to your neurologist, but a lot of times they talk to us from a medical perspective. In the MS community, we have learned that we have the ability to lean on one-another, to share our experiences, our losses, and our wins with each other. You will feel lost and alone, overwhelmed and scared, out of control and like no one is listening, but the MS community will listen. The people in this community are the only people who have been where you are, who have the ability to understand, to truly feel the depths of each emotion you are feeling. Some of my best friends that I’ve ever had are in the MS community, because we have a connection that no one else could possibly fathom.
My last thought is this. We are all fighting the debilitating neurological condition together. None of us chose this fight, but we must continue to battle back. Please, reach out, you are not alone. You will find comfort, acknowledgement, and trust within your fellow MSer’s. Please keep up the good fight, because we must all continue to forge a path forward even though our futures are unpredictable.
8 thoughts on “Welcome – This Is My Story”
This post is good
Thank you so much for sharing your amazing journey with the world
I am glad you shared the start of your journey. Good advice on what not to do.
Looking forward to more about your steps.
Thank you for sharing Brandon. This is so heartfelt and meaningful. Please keep writing. You have a gift. Share it with the world.
Wise words. I was dx’d in 1994 at 24 years old like you. I ignored it like you. After all, as a young man you are invincible;)
I am 53 now. I just wish I and others and the neurologists had the tough conversation about future you as well as dealing with present you.
We have so many drugs these days and so much more knowledge about other modifiable risk factors. Diet, sleep, exercise etc. All within our own gift.
I’d recommend any MS patient, new or experienced, patient watch Dr Aaron Boster’s YouTube channel. It is an extraordinary effort and incredibly useful. Apart from your blog the MS Research Blog from Barts hospital in London is great. Patient and technical perspectives.
And please folks, think about you in 20-30y time. Disability, loss of cognitive function are all things that once lost cannot be regained. I am day 2 into my 5th DMT (Lemtrada) as I am going to fight this disease every step of the way.
I still climb and do long distance hiking as exercise is so critical.
Chin-up and I look forward to following your blog.
Thank you for sharing your journey with the world. This will help so many who need to hear these words, even those like me who have very little knowledge of this.
Thank you for sharing your story. Know that you have others here for you too. Love ya buddy!!
Brandon – my grandson, Kevin, told me when you were first diagnosed with Multiple Sclerosis; which was a surprise to me.
Since the on-set of this weaken disease-NEVER give up fighting. You have a wonderful family to assist you on your journey of life.
Thank for sharing your amazing story with us