Fear is inevitable. It’s a part of life and we all fear one thing or another. I view fear as a motivator in a way. A tool to not become complacent and stuck in a treacherous pattern of non-productivity. Fear if used wisely can become a wise emotion to manipulate into something grand and would have otherwise been thought to be unachievable. When looking fear in the face we have a fight or flight instant reaction. As human beings’ survival is an automatic and natural instinct. We do not opossum up and roll over and play dead. We get real and fight back and not afraid to get in your face. Fear will only do to you what you allow it to do to you. We make the rules, there’s no doubt about that.
I’m afraid of tons of things. But I choose not to allow them to have complete power over me. Doesn’t mean I don’t have moments of self-doubt and insecurity. I used to be the poster child for insecurity. I was never quite the one who “fit in” per say. I was the artsy fartsy weird kid who got picked last for teams and learned how to shrink down to fit inside a locker more easily.
Fear with a chronic illness can bring on a whole new arena of anxieties and insecurities. We fear every day, when we kiss our kids off to school, we make sure they enter the schools gates before pulling away. We kiss our spouses or loved ones before they leave the house because we know people drive like crazy morons at times. We look both ways before crossing the street and do it twice just to make sure. We are cautious because we are taught to not live on a cloud that makes up impervious to disaster. These are normal everyday fears. Keeping your eyes and head up while walking to your car at night because you have seen horror stories of distracted people on cell phones being victims of being grabbed, mugged or abducted even. We are taught to have street smarts. Growing up in Boston and New York I have always found it easy to have street smarts. Don’t open your wallet up on the street. Go into a store first to get out that $5 bill you need for your corn dog from the vendor on the corner. Little adjustments that really are common sense. We unfortunately live in a world where things are tremendously different now. Kids grow up faster, technology makes things easily accessible and we are amped up by crazy news stories and watching politicians go at it with each other.
So, if we’re being totally honest about fear here lets get real. Fear with Multiple Sclerosis means that things that would be classified as “normal” may cause us to have a relapse in symptoms and make it nearly impossible to function have we need to. Here are my Top 4 Fears. Dun dun dunnn!
Fear # 1- BEING A BURDEN
Of course, are we go through our journey with the mysterious and often times infuriating MS; needing assistance. Whether that mean “Hey Hunny can you make me my green juice?” all the way to “Hey Mom can you help me put on my pants today because I can’t use my legs”; regardless of the severity of the help we ask for it’s still asking someone else to assist us with something pretty basic. They smile and say of course and step in as our hero for a few moments and all is well. But I fear deep down that after years of asking the same favors that it will grow tiresome. I have never been one to ask for help. I have it programmed in my brain to feel guilt when someone must go out of their way to help me. Something this Hot MS is still working on believe it or not. I imagine myself years from now and thinking that yes there is always a possibility of me in a wheelchair. But you know I will rock the heck out of that wheelchair. Will have shocks and speakers and everything. But the fear of being a burden to my husband and family is always in the back of my mind. You hear horror stories of spouses leaving their wives after 20+ years because they can not handle the reality of this disease. I am blessed to have a man that welcomes on any challenge we face because he knows we will face it together as a unit. This mentality makes for one strong marriage. The foundation of being a unit. Meaning whatever happens to me happens to him and whatever happens to him happens to me.
I had always known in my mind that I would be lucky enough to take care of my husband who is 20 years my senior. It’s ironic and God’s humor shows here because my husband is in better health than I. I always tell me “I’m the one that’s supposed to take care of you when you get older not the other way around.” His reply to me is and has always been since this journey that “God has made me strong and healthy so that I have the ability to take care of you.” You getting choked up? Because I sure am. Again, my angel sent from God is my John.
Fear # 2- PITY PARTY TABLE FOR ONE
Nobody likes the victim. Everyone always cheers for the hero of the story. I have found that since my diagnosis that people share their concern of course but you can see the pity and feeling sorry for me all over their faces. I sometimes have to stop myself from saying “I’m fine and I’m not dying”. It’s the stigma that we as society has created with people using mobility aids, canes and such. It’s the “oh my gosh!” factor that we have to re format our brains to filter through and say to ourselves “they are still normal and just have something going on”. When you look at people and see them for exactly who they are you don’t see the rest. You don’t see the mobility aids, wheelchairs, prosthetics or missing limbs. You just see them.
When I was in the 4th grade in growing up in Kingston MA I was lucky enough to have made friends with a very special person. One of my best friends actually. His name was Jesse Cooper. Son of Actor Chris Cooper and Marianne Leone Cooper Actress and Screenwriter. Jesse had been born with cerebral palsy and spent his life rocking out in his wheelchair and communicating with his computer. 4th graders are mean and even though of course they would not dare make fun of Jesse they still treated him like he was an alien. Being super careful around him and not fully participating with him in class activities. I gravitated towards Jesse from day one. He loved to write poetry. It was beautiful poetry and I always sort of looked up to him. He seemed so beyond his time. So wise for his age.
Jesse’s birthday was coming up and everyone in the class made him a birthday card. Later that week my Mother got a call from Marianne Leone Cooper his mother. My mother was in tears and I was so confused why. Did he not like my card? What did I do wrong? Marianne had explained to my mother that the card that I had made moved their entire family. I guess kids see exactly what they see. When they looked at Jesse they saw a wheelchair, not much else. When I looked at him as a child, I truly saw art, creative mind, beautiful poetry, a very sharp and funny witted kid. My other classmates had made Jesse cards with drawings of Jesse is his wheelchair and the other kids playing around with him. Marianne had brought it to my Mother’s attention that in my card to Jesse he was not in a wheelchair and we were running together. This is what I saw when I looked at Jesse. I saw strength, determination, charm, wit. I never felt sorry for him. He was normal in my eyes. Just living under different circumstance. I feel the same about my own diagnosis. It’s nothing to feel sorry about. I feel that it was my destiny in a way to have MS. As strange as that may sound but I feel this is part of my purpose. My reason to exist. To share my story. To move others. To bring awareness and teach others that just because you are living under a different circumstance does not make you less capable to achieve your goals. When you see someone with a mobility aid do not feel sorry for them, but admire them, raise them up high because they are doing what a person with “normal” circumstances does on a daily basis, but they do it with hurdles and obstacles. This is something to be admired and praised not pitied and felt sorry for.
Fear # 3- I’M MR. HEATMISER
Heat has never been my favorite weather. Even as a kid it’s always drained me. Although growing up on the east coast summer meant showering in the morning, leaving the house and being drenched about 20 minutes later. Humitity is never fun unless you are laying by a pool with a pina colada in your hands listening to steel drums. Weather is a battle we fight with MS all year round. But for me heat is something I truly loathe. It sucks the energy from my body and drains me completely. Living in Southern California we experience all sorts of weather. 90 degrees in January, 50 degrees in July. Who know’s what happening to our earth but it ain’t normal? This week we have been battling firey winds of rage with tons of California up in flames we are finding ourselves blasting the central air at home and avoiding being outdoors. Being cold is one thing. You can bundle up but when you are hotter than hades you can not run around the town naked.
Fear # 4- GETTING SICK
I have never had a strong immune system. Literally ever. I was constantly sick as a child growing up. If you looked at me and thought of sneezing, I would end up sick days later. That’s just how it went. Getting older I learned that I was always the kind of person who needed a good night’s rest. Even as a kid I would ask my parents at 7:00 PM if I could go to bed and excuse myself. There were a few years in my late teens and early 20’s where I was a frequent observer of the 2:00-3:00 AM hour; while attending college I might ad. I have literally no idea how I did Yoga and Ballet the next morning at 7:00 AM. I still ask myself how I did this and the only reasonable explanation I can find it “youth”. I am not ashamed to say that even now at 30 years old I pride myself on going to bed around 8:30 PM nightly. There are nights where 8:00 PM pops up and into bed I go. My husband is right there with me. He has always been an early bird and is up daily at 4:45 AM doing his yoga or going to the gym. I can sleep a full straight 9-10 hours without question. Sleep is one way to combat a crappy immune system. Everything I had taught myself about combatting a flu season is 10 times more intense now. I have made cognitive changes of sharing things, not letting anyone touch my keys, phone, pens at work etc. When someone is sick, I stay clear away from them. Even my children. My hubby knows when one of our kids is sick, he’s on full Dad duty. A person with a normal functioning immune system may take 5-7 days to fully rid a cold where as myself would be trudging along death’s door for 2-3 weeks maybe even longer. I was my hands like a crazy person, and I am a bulk buyer of the cute hand sanitizers in Bath and Body Works. Getting sick means that my body will only attack itself more. That possibly something else will go wrong with my disease. That I may not be able to get my infusions during illness because they break down my immune system even more. Getting sick now means my body literally feels like it was hit by a truck and then backed up over again.
Fear is a part of our lives and will always be a part of our lives. If we feared nothing than in a way wouldn’t we be taking things in life for granted? Fear of loss, fear of death, fear of illness. Fear should almost be classified as an awareness. It’s just something in the back of our minds to be aware of. The possibility that things may go in a different direction is always lurking and that’s ok. It makes the ride of life enjoyable. Get off the baby rides and head to the roller coasters. They may give you whiplash for a second or you may toss your cookies but when it’s all over and your hairs a mess and your eyes are all huge and dilated, look back and say, “Yah I rode that, and it was insane!”
Don’t give fear the power it engrains in all of us. Why fuel the fire? We can sit at a safe distance and watch as the flames dance around the flickers of our lives. That’s all life is isn’t it? A blink and flicker of time? Why not make the best of it regardless of our “Circumstance”. We are all normal when you think about it. We came from a mother and father even if it was genetic only, we were birthed and were infants welcomed into a crazy world of unknown and adventure. What makes us so different? I am no different using a walking cane than someone walking by me wearing a pair of sunglasses. The sunglasses help you see because it’s bright out. My walking cane helps me walk so I don’t go tip tip boom. Simple as that. I challenge you to start looking at the world through different glasses. Less judgements, less prejudice. When you look at someone with a different circumstance look at them in their eyes and try to seek out their soul. There you will find beauty and give fear a run for it’s money.
xo A Hot MS