As a person with Devic's Syndrome, a rare illness similar to Multiple Sclerosis, there are numerous difficulties that plague my life. First and foremost there is the physical repercussions that I endure from having this disease. The second is the financial strain it puts on my family. I lost count of the number of times we had to re-modify our mortgage so we wouldn't lose our home. Borrowing money from our relatives left a sour feeling of shame and worthlessness. The unrelenting struggle to keep afloat wears on us emotionally and sometimes the stress is heavy enough that we buckle from the sheer weight of it. Which brings me to my next topic.
Ah, such a darling little phrase that seems to be uttered during tumultuous times whether they be turned outward (world events) or inward (personal struggles). Life sure has a funny way of dealing you a crappy hand sometimes. Some people get dealt several and yet most of those type of people I meet are the ones with the most upbeat and positive attitude. Why is that? Surely they are hiding some type of mystical secret that enables them to get through the bad times. Or it could just simply be that being miserable about your circumstances does nothing to improve the situation. I've met a few people also who firmly believe that by having a positive attitude you send forth a positive energy which in turn attract positives energies back to yourself.
But I think that even the most upbeat people have their moments of weaknesses. I mean after all they are only human also. It does take effort to keep up that happy perspective on life especially during difficult times. I mean if it was easy then we would all be skipping around with big cheesy grins on our faces. Turning lemons into lemonade is a reminder to ourselves and others that we just need to tweek our perspective a bit. I actually adore this metaphor and try to keep it in my mind during tricky circumstances. It's my way of reminding myself that good things can come out of not so good situations. I'm not perfect here; there have been times I threw this tidbit of inspiration out the window, into the street, and laughed as I watched it get run over by a truck. We know it's always easier said than done; it's the actions and follow through that turns this cute motivational phrase sour.
Many of us rang in the New Year with family and friends while others enjoyed the festivities in the comfort of their own homes. But one common thread binds us all no matter how we celebrated and that's the feeling of hope and change that the beginning of a New Year brings. We try to leave the hardships of the previous year behind us and move forward with resolutions and optimism. We set goals for ourselves that we believe will improve our health, finances, or relationships. It can almost be compared to hitting the reset button but do these aspirations set us up for failure?
Don't get me wrong, having goals is healthy - it motivates us. Some goals, however, are set too high which in turn can have a negative effect. A goal needs to be seen as a ladder with many rungs; it's time consuming and tedious but a sure fire way for achieving success. Think of it this way - a war isn't won by one massive battle but a series of smaller ones. Of course, it's easier said than done. Perseverance seems to be the #1 culprit in sabotaging our desires. I wish I had the magic answer for keeping on track but I believe that when we constantly try to keep the focus on our goals eventually we change our habits and mindset.
I take pride in my kids' love of books during these technological times. Maybe I got lucky. Maybe my sons, who are now 20 & 15, were on the cusp of the digital age before it really took off. But I'd like to think I had a hand in it. Barnes&Noble was like their Toys R' Us especially with my youngest. I took them to the library a lot when they were little. It was the one place where they could pick out 20 things, including movies, without having to hear me say "no." We lived and continue to live paycheck to paycheck so getting that much had them feeling ecstatic. We would also play fun learning games on their computers since our DSL dial-up was as slow as molasses. (I'm really aging myself here but I'm only 40 dang it.)
My youngest still likes to acquire books especially collectibles and hardcovers; he's just like his momma. My oldest recently came home with a book purchase. I smelled it as soon as he came through the door. (I know I have a book addiction but I'm not apologizing for it.) Not only was it a hardcover but it was about the ancient Greek gods and goddesses. POOF! Mind blown. I've read a lot and still take interest on that particular subject. I thought I lost him there for a while but just like a spacecraft that eventually comes back to earth so did my son. I do admit they spend more time on Xbox and their phones than I'd like but I'm still proud. When I feel like they're going down the rabbit hole, particularly with Xbox, I just go all psycho mom on them and they've learned the hard way that it's just easier to do what I say.
Video games and cell phones were around when they were younger but not like the way it is today. I'm not saying to halt progression or advancements because that's ridiculous. The only constant in life is change and you need to accept it because otherwise you become obsolete and unable to relate to others. There are so many positives attributed to advancements that they far outweigh the negatives but I do firmly believe that some of the old school ways need to stay, such as books and libraries. Books transcend time so much so that I've connected with a lot of people on Goodreads who are in their 20's and enjoy the classics as much as I do. Libraries are great for people on a budget not to mention that it plants the roots for a child's love of reading. The fun and informative workshops are great for kids and adults alike not to mention the numerous author meet & greets. I know it also helps that my kids frequently see me reading and/or writing. I'm not completely innocent because I too am guilty of spending quite a bit of time on my phone but reading an actual book not only gives your eyes a break it also gives you something tangible in an increasingly intangible world. We need that. Kids need that. Watching a beautiful sunset is different than seeing it in a video or a post so we all need to spend more time in the actual world than the virtual one.
So, if your kid's more digitally addicted than you'd like start off slow by getting them an eReader. If there's a series your kid particularly enjoys get them the actual book instead of the eBook. If there's a new release they had their eye on do the same thing. Get the love of reading planted first then slowly slip in a book. I know it's sneaky but it'll be our little secret. If your kid's still a tyke take frequent trips to your local library. Not only does it save you money but it's a great bonding experience. My kids still remember their trips to our library all these years later. We face different challenges than our parents did so we just need to be a little more creative in our efforts.
When the neurologist spoke those two little words for the first time I knew a lot of things were going to change. Even though I knew this, the reality of it was still a hard pill to swallow. The kind of pill that gets stuck in your throat. This leads me to my eye. When my symptoms began it basically felt like I had the flu. My bones ached, my legs felt heavy, and my skin was super sensitive. But then the vision in my right eye deteriorated pretty quickly. Becoming blind in that eye was the biggest pill I've ever seen in my whole life and I knew it wouldn't go down easy. As you can imagine the first few weeks were full of anger and despair yet I still remained hopeful. As the weeks turned into months and after several rounds of steroids, my hope of regaining my sight began to dwindle. The months turned into years and any flicker of hope that remained was snuffed out completely. I actually felt more sorry for my mom than I did for myself. She still keeps praying to St. Lucy and holds onto that fantasy that maybe one day I'll miraculously see again. As a mother myself, I can imagine how agonizing it must be to see your child, no matter how old they are, go through something so difficult. You want to protect and help your child but when the ability to do so is out of your hands it's devastating. My father felt just as bad and just as useless. He was a quiet man but I could see it in his eyes. So I managed to stay cheerful and smile through the tears to ease their burden of pain.
Living with Multiple Sclerosis you're forced to make it your new norm. You're strong armed into accepting its symptoms and limitations. The revolving door of doctor appointments, tests, and medications become part of your natural rhythm, almost like going to work each day. MS didn't ask our permission nor were we ever given a choice. So what do we do? We change. We learn to accept MS as part of our lives. It's true when it was said that "the only constant in life is change."
We figure out what time of the day we have the most energy so we can utilize it. We avoid extreme temperatures depending on how it affects us. We learn new and innovative ways to get our chores done. Having the lights turned out in my right eye took some real getting used to. My depth perception is a bit messed up and I still bump into things but I manage fine. It's different but fine. Thankfully, my warped sense of humor smoothed the transition.
People, even myself at first, see MS as a weakness. They're not totally wrong because it does weaken our bodies, but my God, they don't get to see, to really see, how incredibly strong we actually are. It takes an immense fortitude and indomitable will to fight through each day the way that we do.
So here's to us, some bad ass warriors!