I won’t lie, living with MS sucks! The worst part of this journey is physically not being able to do things I want too. My life has changed, and it hasn’t changed for the better. I adapt and try new things but this doesn’t fill the void of doing activities that I once took for granted. As I said in my first entry, I used to be a very active person that enjoyed working out, riding my Harley, snowboarding, golfing and so much more. What I miss the most is doing stuff with my wife and kids! Our family is a very active one that participates in multiple sports and physical activities. I was generally able to partake in everything that my two older kids did as my MS didn’t progress to what it is now. My oldest (daughter) is 22 and my son is 20. They at least had there dad in the prime of his life to participate in all facets of their lives. My youngest daughter, who just turned 14 is a different story. I think about her everyday and the stuff I have missed and can’t give her because of this disease. It is not fair to her or me for that matter. The hardest part is knowing that she doesn’t fully understand that I just can’t flick a switch and be normal.
“So, what do I miss the most?”
1. I miss being the husband I once was. This cruel disease affects everyone in my family but I know it is especially hard on my wife. Like everyone else, she has her own life and job issues to deal with which are compounded with a husband that is not who she married. I love her so much that it scares me! What scares me the most is what the future may bring. My mind constantly goes to that place where eventually she can’t deal with it anymore and gives up on us. There is no reason to think this, but it is natural and can’t be stopped.
2. I miss looking towards the future. Ever since I was a child, I always looked forward to the future. NOT ANYMORE! The future scares me. What will I be like next year let alone 10 years from now? Will I be able to walk my daughters down the aisle or dance with them at their weddings? How much longer of intimacy will I have with my wife? Will I be able to hang out and do fun things with my son? Several times throughout the day I ponder these questions with no concrete answers that I can accept. This is my reality that I find most difficult to deal with. Talk about mind games!
3. I miss walking normally. It’s a wierd feeling when you see other people walking effortlessly and envy them and their gait. Walking is probably the biggest activity I took for granted. I have to use a cane or walking stick for the majority of my excursions and if I go to an amusement park, zoo or any other large venue I have to use a scooter. Mentally….this sucks! I am only 47 years old. I still can’t get over the stares and looks given by other people. It’s easy to ignore if you are not the person in the chair nor the person that walks like a drunk on a normal basis. I have dreamed several times that I could walk normally and have woken up feeling my MS got better only to realize it was a tease. A nightmare if you ask me!
4. I miss riding my Harley. Besides getting married and having a family, my biggest dream as a kid was to someday own a Harley Fatboy. In 2004, my wife made this a reality by buying one for my birthday. Man, what a rush it was to ride that iron horse! Everytime I got off after a ride, my mind was clear and I was in good spirits. Due to the deteriation of my right side, I can no longer ride her safely. Instead of selling it, my wife got her license and rides it. I now ride vicarously through her…..even if I get a little jealous, haha.
Overcoming and dealing with these new thoughts and challenges in my life is my new game! Life isn’t all bad, my next post will deal with the positives of MS. Yes, believe it or not, there are positives associated with this disease! My life is not doom and gloom……sometimes it just becomes a little depressing.
“NEVER STOP THE FIGHT!”