In my last post I talked a lot about what remained ‘static’ in my life since that day 7.5 years ago… And I was crystal clear about what lead to the creation of my new ‘normal.’ But when it comes to everything that has drastically changed… I barely touched the tip of the iceberg… So here we go!
Sometimes it is still crazy for me to believe that everything in my life has been effected because of one simple diagnosis, given on one simple day… But the problem is this illness is not simple at all…in fact it is the furthest thing from simple.
The brain is the most powerful tool in the human body, and this illness has the spot on ability to completely and utterly MESS IT RIGHT UP!! 😡 and not only the brain… But the spinal cord too… My BIGGEST nightmare! How can one illness have so much power? That is something I have always wondered…😤
Throughout the years of my diagnosis I have gotten to know quite a few people who have MS or who are strong supporters of someone battling their own Journey with MS… and there are NO two people that have the same disease course. In fact there are no two people that really are even close to having the same disease course. This is partially what makes understanding MS so complicated.
Although MS research has come a long long way, there are still so many unanswered questions. But of course if we had all the answers… We’d have a cure.😓
There are so many “Why’s”….Why for example am I the one physically disabled from the torso down.. and not the person who has been left blind? And why is the person who has been left blind not the person who struggles every single day to remember the simplest details? And why is the person with such cognitive difficulty, not the person who struggles every single morning just to button up their shirt?
The answer to the above is that no one knows…and this is pretty much how life goes in general… no one really knows why bad things happen to good people and vise-versa… but the one thing I can tell you with 100% certainty, is the grass is rarely greener on the other side… And I will never wish to trade places with anyone… because most often our own problems are the best ones to have.
That being said I DO wish I could trade places with myself… go back to my old ‘normal’…
I yearn so badly for the person I once was and the life I once lived. It never ever gets any easier to remember how easy it was to complete a simple task, how easy it was to get up and get dressed and start the day, or how easy it was to step off of a curb and walk up two steps, how simple it was to walk through sand, snow, grass, on top of cobblestone or simply just on my own hardwood floor…how easy it SHOULD be to put one foot in front of the other😬… how GREAT it felt to just be able to slip on a pair of flip-flops or upgrade to a pair of heels, and just wear whatever the heck I wanted! … To never have to worry about what shoes to wear with an outfit, how it didn’t matter how heavy the shoes were, and how I could actually wear a good quality pair of shoes instead of the lightest things I can find at Ardenes 😣…
How I never even stopped for a second to think about how little effort it took walking to the bathroom, because it was such a “second nature” kinda thing…or how my body once felt without severe nerve pain and out of control spasticity weighing it down every single day…how enjoyable it was to play hockey, soccer and tennis, and how enjoyable it was to play in Tennis Tournaments with my husband… The tennis coach I met and fell in love with at our local club almost seven years ago…
AND most recently I can’t help but envision what it would be like to pick up and carry my own child, something I had envisioned long before MS, but never had the ability to do..
ALWAYS wondering how amazing it would be to kick the soccer ball in the backyard with Landon, or to teach him how to skate… How easy it SHOULD be to SIMPLY get him a glass of water, let-alone all the other things that mama bears need to do…😘
The list goes on and on, and like I said it never gets easier to remember or envision, and the desire only Burns deeper…
BUT…the crazy thing about all of this is… it’s THAT burning desire which we need to FIGHT…to find answers, treatments, our next Avenue, plan of attack, or the next road to travel down…as we continue along this crazy journey of relentless optimism.
It doesn’t matter what your journey is or what battle you are facing. It doesn’t have to be MS or any other type of disease. It may be something totally unrelated to Health and Wellness.
MAYBE it’s something to do with your career path, family life, personal growth or any other type of Journey you may find yourself on … Whatever your journey is, just make sure the fire 🔥inside you NEVER dies…
And if you happen to find yourself in a situation similar to mine, please take comfort in knowing that by remembering all of the good that once was… It doesn’t mean we are dwelling on the past. It simply means we have the courage, determination, faith, and perseverance to never ever give up on our dreams. It means we have the ability to reminisce, hope and believe that we will be better than what we are now, and closer to what we were then.
It means we have the strength and ability to let out ALL our emotion through one SOLID cry, 😭 and then jump off the bench and right back into the game! 😎💪♥️
#nevergiveup #keepthefaithalive #burnfireburn #putmeincoach
9 thoughts on “The Inevitable I NEVER saw coming”
You made me cry reading this. I remember the same 4inch red heels we both had in the office and know how you loved them (I can’t wear them anymore either because of my arthritis 😞) I pray that you find a treatment that helps and that you continue to enjoy that beautiful little boy. Red heels really aren’t that important in the grand scheme of things 👠😜
Thanks Tina. I have a picture in those red heels that I often look at. It’s way more than the heels tho:( it’s everything good that goes along with them. Like being able to walk. #oneday
Oh I know. And I pray that happens for you 😘
Well said! As someone who was diagnosed with MS 19 years ago, I totally understand the challenges, disappointments and uncertainty MS gives us. I have learned to live life to the fullest that I possibly can, with the challenges of my disability. You have captured so well, how the little things in life that most people don’t think twice about, has such a huge impact on our day to day living! Thank you!
Thank you so much Sharon for taking the time to read my blog. I am so sorry you also have to live life with this debilitating disease. But I can tell you are a true MS warrior!! Xo
We don’t know each other but I know of you. My brother guillermo (best kwon as Billy) went to the tennis Academy with Joel and that way I knew Joel many years ago. I wanted to take the time to tell you that you are a very brave woman and to thank you for showing me and others to keep fighting and to never give up. .. because sometimes we need a reminder to keep strong.
Hi Adriana thank you so much for your kind words and taking the time to read my blog. I do remember Billy Joel and him were very good friends. I would love for you to follow my blog so that you are notified once I release you posts. The free to share my blog as well, my goal is to reach as many people as possible so that the message is shared among many. Thanks again!!
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You sent me down memory lane thinking about how my life used to be. I love your article, keep fighting we’ll get through this!💕💕💕