The Choice Is Mine… and Yours

“You and me not gonna wake up every morning and get what we want.”

A choice is necessary

I heard that notable line in a movie once. Though I cannot remember which movie it was, that one astute line still resonates within me. It is incredibly factual, most accurate and undoubtedly applicable in an array of situations that anyone can experience in a lifetime. There will be those wondrous days, whether fun-filled or just comfortably content or uneventful, that we awaken to and all is well until bidding goodnight; however, there are the mornings we arise and must face the ongoing or onset of various unfortunate happenstances or adversities. For instance, a troubled relationship, a child in some sort of crisis, loss of a loved one, financial woes, vehicular problems, poor health, involuntary job loss, and world calamities are only several examples of waking up to something we don’t want to encounter. Naturally, what anyone would want to awaken to every day are good days, good times. That’s not particularly realistic so a choice is necessary – succumb to the trials we are faced with or seek ways to manage and cope to live a fulfilling life in spite of them.

A whole new MonSter

I awakened on July 13, 2007 to receive a diagnosis of Multiple Sclerosis. Over the years and especially presently, I awaken to the daily challenges of living with a chronic, degenerative disease. Definitely unwanted. I learned early on that it was necessary to make a choice because there was now a whole new MonSter of an element to awaken to which didn’t replace any other trials, but instead added to them and it wasn’t going anywhere.

Gone In 60 Seconds: When We Suddenly Aren’t Well

In my many years of living with Multiple Sclerosis, there have been so many things I wish I could convey to the people around me that don’t live with the disease. One key concept that would be incredibly helpful for myself and others with the disease, is that we can go from feeling relatively fine one minute to being overcome by symptoms the next. The idea that symptoms can come on so suddenly, often coupled with the invisibility of said symptoms, can be difficult for our friends, family, and coworkers to accept. It’s a fact of life for many with MS and can lead to canceled plans, strained relationships, and excessive amounts of frustration.

How can the change happen so quickly?

One of the big reasons that symptoms can come on so quickly has to do with what we call triggers. I’ve explained triggers in more detail here. The basic concept though, is that there are conditions (like temperature change, noise, and stress) that have an impact on us in a short amount of time. When you have MS, the myelin sheath, which acts as a layer of insulation around our nerves, is damaged. That damage makes it hard for signals from our brain to get where they are supposed to go (either at all or sometimes it just delays them). Different conditions can make that damage suddenly more apparent.

Our brains have problems communicating with the body

You may be thinking, “well if that damage is already done, how is some outside condition causing problems so suddenly?” A good example is temperature. Those electrical signals traveling along the nerve are sped up and slowed down depending on the temperature. When the myelin is damaged, meaning there is less of an insulation layer, outside temperatures begin to have a greater effect on the speed at which those signals travel. While temperature is a common example, there are many conditions that can cause these signals to have difficulty going where they need to go. Essentially, our brains begin to have problems communicating with the rest of our body. With our brain controlling everything, that can be extremely problematic and issues can appear quite suddenly.

Perspective on Excessive Positivity

The community of people who suffer from Multiple Sclerosis grows every day. With that, the amount of people who try to take on the role of inspirational social media warriors grows with it. I feel like every time I open Facebook or Instagram, I see multiple people exclaiming how they “decided” to thrive with MS and not let it “have them”. I’m very happy that they are doing well, so far anyway, but just because they are “thriving” doesn’t mean those who are not haven’t been fighting just as hard, if not harder.

Positivity sells

Let’s face it, positivity sells. People want to be heroes and want to see heroes. Even the National MS Society’s social media seems like an unending stream of feel good stories. Again, great for those people, but there are other stories out there. For every wife that has stood by her man in sickness and health, there are those that haven’t. For all the MS patients that have just finished 5Ks, there are some who are in wheelchairs. I’m all for remaining positive, but when you see so many positive stories without really seeing the other side, it begins to diminish the effectiveness of those tales. Aside from that, it can begin to have a pretty negative effect on a lot of those people that are struggling.

DON'T JUDGE ME

In the past, I have experienced discrimination when I have had use my handicapped-parking pass. I’ve had people judge me for using the motorized scooter inside the store because I “look fine”.  I can’t even begin to tell you just how many times I’ve been judged, just because you can’t tell that something is wrong with me easily.

Being judged by others with MS

However, being judged by others that are living with Multiple Sclerosis has to be the worst type of judgment I’ve ever received. I’m sorry that you have a more progressive type of MS. I wish that I could take your pain away and that I could help ease your daily struggles. I guess that’s why I write at all, to help those that can’t get the words out share with their loved ones the truth about MS.

Imagine being told over and over again, “You’re so lucky, I’ve been in a wheelchair for so long, you appear to be doing just fine against MS.” Or… “I don’t think you are typical of MS’ers. I guess you can have MS without any real symptoms.” With that being said, I’m not trying to be rude to those who say these things, but I can tell you that they can be hurtful towards people like me that live with a chronic illness with mostly invisible symptoms.

The Key to Contentment

It’s that time of year again, Thanksgiving is behind us and Christmas is coming. In previous articles, I’ve talked about the stress of the holidays and how that affects our bodies, but this year I want to go a different route. This year I want to talk about contentment. It’s something I think is important not only when it comes to holiday gifts, but when it comes to our health and our lives as well. We don’t always get what we want, but finding contentment despite that is the key to real joy.

Contentment and joy

You may be wondering how on earth I can mention being content with multiple sclerosis. How can contentment find its way into the crippling fatigue, pain, cog-fog, numbness, and more? Let me first say that it took me a long time to find contentment in the midst of it all. But, finding contentment despite your circumstances is a beautiful thing. You see, if I always based my contentment on my circumstances, then the probability of me ever finding contentment would have been shockingly low. My contentment isn’t based on what’s going on around me at the moment though, it’s based on joy. I’ve found that being content brings me joy, and having joy helps me remain content. They go hand in hand.