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.
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!
We've all heard the phrase, "The Long Arm of the Law", right? Well, I thought it would be quite fitting to use this coined phrase when describing Multiple Sclerosis. MS doesn't just wreak havoc on your body, its damages can be felt emotionally and financially, not to mention the consequences on our relationships.
Let's first tackle what could happen emotionally. With MS comes feelings of hopelessness, sadness, self-loathing, and anger to just name a few. But the one feeling I never expected was grief. I pretty much felt like I was in mourning; I was mourning my former self. Sometimes I still feel that way. I was going through the five stages of grief which I thought only applied to the passing of a loved one. I believe I'm in the final stage - acceptance. Well, not entirely, I'm like 75% into it, but it's a work in progress. We're all just works in progress I guess.
Next up is finances. That's a doozy. It's hard enough living paycheck to paycheck let alone throwing MS into the mix. A lot of us can't work anymore due to our symptoms. It takes forever to get approved for disability and when you do it's barely enough to live off of. That constant worry and weight on our shoulders is enough to cause more flare ups. It also creates added stress on our loved ones which in turn creates more self-loathing. We see ourselves as more of a burden than anything else.
The last thing I'll touch on is the way MS affects our relationships. Sadly, sometimes relationships end because of MS, including marriages and friendships. I think it's probably due to all the previous complications I've already listed. All those things put such stress and pressure on our most treasured relationships. I've been lucky enough that my relationships have remained in tact but only because all parties involved worked hard at sustaining them. I'm not saying I'm better than anyone else, I'm simply saying that somehow, perhaps by sheer luck, we've been able to weather the storms. We've definitely had our share of fights and even months of complete separation. Yet it's constant work to keep those relationships strong and healthy. But even with pretty stable relationships the dynamics have certainly changed. Not so much on their part but on mine. I'm different, I'm not the same Lisa I used to be. I still feel alone sometimes and there are times I feel like an outsider. This feeling has diminished quite a bit but it still lingers.
I wish I had the answer to all these tentacle - like effects that MS has on our lives, or even better a cure for the disease itself. Alas, I do not. What I will do is post some links I've found to be helpful in my own life. I admit it can be disheartening when a lot of organizations say you don't qualify or there's so much red tape to cut through, but we have to keep pushing along. I mean crying and curling up in a corner isn't exactly the healthiest of options.
To stay connected to other people afflicted with Multiple Sclerosis:
Monetary Financial Aid:
Directory of Personal Therapists Specializing in Chronic Illnesses: