By: JD Author, Reporter-Journalist
“You know my name, but not my whole story. You’ve heard what I’ve done,
But not everything I’ve been through.” ~ Andrew Frey
Somewhere along our journeys in life, I am pretty sure we have all heard that phrase, “I sure wouldn’t want to be in their shoes” and “I wonder what they did to deserve that bad karma?” Rest assured, you’re human because I am quite positive we ALL at one time or another in our adult lives have wondered that very same thing when looking at the lives of others. After reflecting on that quote, another one comes to mind. “Don’t judge someone, until you have walked a mile in their shoes.”
The majority of this past October and November has been an eye opening experience for me. I have been met with many physical challenges, emotional battles, struggles, disappointments, and heartbreaks. As each one of the ugly life-demons reared their heinous and vindictive weapons of circumstance at my spirit, my body and my will, I found myself staring at the shadow of my life, broken, frightened and uncertain of the road ahead.
Life does not come with a handbook. There is no manual for life’s experience or how we are to manage the obstacles that cross our path, the moment we turn 18. We have to just live our lives and put our faith in the higher power for which we draw our strength, that we will do our best to make wise choices as we go along. It’s kind of like taking a vacation without a known destination or a map. Plenty of roads and highways and we as the driver choose the exit, turn or off-ramp that seems to best fit what adventure we choose to experience.
Being I have been on my adult path for over thirty years, I thought I could handle about any route I took that was adventurous and even a few unanticipated detours that led me down scary avenues I could have happily lived without. The roads over the past sixty days however, have been life changing, emotionally taxing and left me in tears as if my radiator had burst, my energy has escaped as if my tires went flat and I am left at the side of the street of life, a heap, a wreckage, ready to be towed to a lot somewhere, just scraps of a human being, wondering if I am to remain a clunker until I become salvage, or will I find some hope somewhere?
Now that I have left that metaphor floating around in your head, let me place another thought there. The side of me most of you, my social media followers, friends, acquaintances, and colleagues have not seen. That side is the part that the majority of my family knows little about. They know how to pick up the phone and ask, or even use Google to research Primary Progressive Multiple Sclerosis and Arnold Chiari Malformation, to read the blogs of fellow sufferers, and understand, what they do not see in black and white. But why would they anyway? People prefer to only hear the positive and cheery and not the down side. I can relate. I would much rather have my life be picture perfect too, but it is not.
The whirlwind of craziness hit me hard mid October, when my good old body decided to revolt. I assumed that I was just attending another boxing match between my usual self and my opponent MS. I was blind-sighted by an opponent I had never experienced. Standing across from me, in the ring, and hoping for a knock-out was Trifecta! MS, ACM and Fibromyalgia all blended into one mean ass boxer, wanting a knock-out-punch in the first round. Of course my “trainer” (St. Luke’s Hospital Staff), were in my corner, coaching me, but by the 4th round, the fight was called, and I lost. Defeat, was better than a knockout punch, but the wounds have left scars that cannot be erased.
Multiple Sclerosis is an ugly incurable disease. Yes, there are a few doctors, websites and holistic healers out there who claim, there is a “Miracle” remedy, but do you really think the over 500 thousand people that have MS in the United States alone wouldn’t be cured by now if it worked? I have spent over a decade researching many of the holistic and dietary nuts out there who say that changing what I eat will stop it’s progression, and make life easier only to see the fellow sufferer who created that website is usually dead 5 years later, or never had MS and was just marketing some “Magic juice” of false hope for a small donation to subscribe to their bull-crap theories. Haven’t we learned from history? Don’t drink the kool-aid! Its poisonous words will get you nowhere.
Anyway, back to this boxing match, and the damages it left behind. MS, as some of you are aware, is different for each individual that was given this not so welcome gift. For me, it has created these little fluff clouds on my brain that are often referred to as lesions. And yes, they do make some great pharmaceuticals that allegedly slow the progression of the lesions, but not without a price. Like the saying goes; “nothing in life is free”. My price when trying to go the pharmaceutical route numerous times has led to life threatening disasters. One medication that was meant to slow the progression of MS led to 3 medications to counter the side effects, then came more side effects from those 3 drugs, that eventually led to a total of 16 different medications needed within one year that I was beginning to feel like a scientific experiment gone wrong. Not only did it show zero slow down of the progression, but it hampered my health so much, I couldn’t walk, couldn’t see worth a hoot, but I could barely breathe, brush my hair or even bathe without being totally dependent on someone to assist with nearly everything I did. To me, that was no quality of life.
I was weaned off the chemical cocktail and within a few months began to regain strength and a renewed hope that perhaps I would learn to just cope and ignore my MS as much as possible. Basically I got to the point I was feeling so good, I was almost in denial. I told myself “I got this”. Of course when the next relapse hit, that denial faded, and once again we tried a few other drug regimens specifically geared towards MS. 15 years later and after trying Avonex, Copaxone, Betaserone and Techfidera, with each nearly killing me with side effects, I stopped trying to fight the progression and would just take simple medications for pain management and neuropathy, and seizures. But like all good road trips in life, eventually they end. On this last trip, I was car-jacked by two other medical conditions I had been battling, and kicked clean to the curb, as they rode off with my car, my life as I knew it.
My diagnosis went from relapsing remitting MS to Primary Progressive MS. The lesions have multiplied almost as quickly as the darn dust bunnies under my couch. Now the dust bunnies I can take a vacuum to, the lesions, they are here to stay. This does not make me happy at all. Those who know me personally also know I have worked more than 75% of my life. As a kid I delivered newspapers, as a teen I worked in a harsh environment I care not to detail, and in my adult life, I raised 4 kids with unreliable to almost no help many times. So I have always been a go-getter. I have always tried my hardest to make a good career for myself. I have had many successes and just as many failures, but they were all mine to make. I chose my roads, avenues and highways. Now MS is choosing to make me be a back seat driver and it angers, frustrates and just irritates the living heck out of me. Ever ride in a car with someone who really should not have been issued a drivers license on the highway at 65 MPH, and know you can’t just jump out? Welcome to how I am feeling about now.
The car is racing from lane to lane, I find myself pinned to the seat, trying to close my eyes and reopen them over and over, only to feel the overwhelming urge of nausea as I have no retreat, no escape. That is the feeling inside. The feeling that bubbles up inside of me and will not subside no matter what I try to do to change it. I feel like I am screaming at an invisible driver to slow down before we crash, but the driver is deaf and does not hear my plea. I spent a long visit with my neurologist last week, and he suggested joining a support group and I reminded him I was in two different support groups over the last decade and a half. I had even grown fond of several of the members, then they all up and were in their own car crashes and died, and all younger than me! Then the other support groups I looked into, the majority were like the MS Foundation groups, all supported by companies pushing drugs and crap that try to encourage me to add years to my life again by becoming a pharmaceutical vegetable like I was a few times in the past. NO THANK YOU!
Well today I feel like I did jump out of that moving car at about 55 MPH. There is enough nerve damage I can’t feel my toes. Hell some days I can’t even feel anything below my knees. When you can’t feel them, you don’t know where your feet are and hurt yourself. When you have to resort to rolling, they swell from lack of movement. My left arm, despite surgery still has a mind of its own, and naps the majority of the time. I think it has narcolepsy, because every time I try to use it, my fingers fall asleep and my attempts to accomplish a task end in an epic fail.
Oh and let’s not forget the wonderful MS side effect called PBA. Yeah another acronym for something I cannot control. Yes, they do make a pill for it, but some of the compounding in it, I happen to be allergic to. PBA is a disorder that’s neurological and my brainwaves misfire and I find myself either laughing or crying and am in no way able to control it. Picture being in a store and struggling as it is to maneuver slowly as it is despite pain and numbness and have a burst of laughter or crying you cannot control and you find some place to quickly retreat before it kicks in full-blown and security calls the police after a code “yellow in aisle 3” (lunatic on loose). Not only can you not control it, but you now find yourself surrounded by 2 security guards, 4 cops, helplessly sitting on the floor sobbing and trying to explain through the choking tears, and you hand them a card from the neurological foundation that explains you have PBA, and MS and need medical attention.
They look at you baffled. A few minutes pass and you’re trying to control the uncontrollable when you hear a cop over the radio call for EMS on a psychiatric emergency. Just when you’re recovering from the random attack that hit you most inconveniently, you are almost in tears from sheer embarrassment as a crowd has formed around and the jeering and mockery has commenced. Not only are you now feeling like an idiot you are angered because society has made another judgment call on something they are totally ignorant about. Well take the YOU out of there and insert my name, because that was me over a week ago and I haven’t left my house since then. Top it off with the news that my physicians all say “NO MORE WORKING”, the work I do at home is complicated more and more by physical limitations and my crafting hobby is being met with the increasing cognitive challenges and dexterity as my fine motor skills are fading rapidly, this is starting to suck.
My battle now is learning to cope. My road trips, seem like they are becoming small trail hikes and I am only going down my hallway or from living room to the couch. I keep telling myself this isn’t then end and don’t give up, and it is a hard battle, but I do find myself being thankful anyway. Yes, believe it or not, I have a new battle for December on out. I even have a New Year’s resolution for 2016.
My goal is to try to be thankful every day when I wake up, that I am breathing and remind myself that I knew this time in my life would come one day, and I need to find something positive to focus on each time something negative smacks me in the face. It is a battle I want to work on winning by at least facing it with determination. I discovered some new things I have accomplished over the past few days, and thought I would share them.
- My true friends, have not abandoned me, they will always try to e supportive and understanding even though they never will, because they don’t walk in my shoes.
- Some friends have now become just acquaintances, since they really don’t give a damn since I am no longer available to suit their “Need” as they had anticipated, or my disabling progression makes them uncomfortable, and they no longer deserve the title FRIEND.
- I am becoming proficient in using my smart phone calendar for remembering the 80% of the tasks I used to not need reminding they existed. Especially those pills for feeling my toes or that medication so I don’t have a seizure and flop like a dead fish in public and foam at the mouth and scare the be-jesus out of some kid passing by. The pain medication I need no reminder to take, it comes with its own warning system.
- If I forget how to crochet something after 45 years, just put it down and wait about an hour or two, it might come back to me about the time I sit down to eat lunch, and when I hurry and quite the steps into my phones voice to text notepad to save and try later, I will only have to redo part of my project because my hands didn’t synchronize what my brain was telling them my audio instructions said to do.
- If all else fails, and I struggle with emotions and coping, I can wait for the PBA to kick in and let it decide if I am going to a.) randomly giggle myself near senseless and try to make a mad dash to the bathroom laughing uncontrollably while trying not to injure my numb feet and pee on myself before sitting on that porcelain throne; or b.) break out into tears like a little child who just discovered their favorite pet goldfish just died and got flushed.
- I have not lost my sense of humor. MS can rob me of many things, but as long as my brain has function, as long as I have any stitch of breath in me, it will not destroy my memories I have made with my Children, grandchildren and those I love. It will not steal my laughter inside nor my will. It will not take away my hope for a cure that is real.
Those of you who know me, please take the time to actually understand me for who I am becoming, while remembering who I was before now (one day you may have to tell me in case I forget). Be supportive of this mixed-emotion journey I have reached in my life. If you can’t do that, then find some other person to judge, whose shoes you think you have worn. I don’t want sympathy, I want your friendship, I want you to educate yourselves and learn what you cannot see, that is going on in my life and my world. I want you to stop looking at what you may not be able to see. Since you cannot walk in my shoes, ask me, I will be glad to talk about it. If you do ask, be prepared to listen. Don’t judge how my life is, how I feel, or how you think I should feel based on what Social media like Facebook lets you think I am doing, or my appearance does not tell you. MS does not tattoo a sign on my forehead telling you what my life is like when you’re not “looking”.
If you don’t know me personally, and just stop by to read my blog and many rants, thats awesome too and I thank you. Do me a favor. If you know someone with MS, ACM, PBA or any other Neurological disease that has no cure, do research and be supportive. Everyone battling an incurable disease needs people to be there for them. Even if it is just to be a good listener, when they feel they have lost hope. Be a virtual or physical shoulder to lean on when things get tough, to tell them a good joke, or text and email them a funny meme to brighten their day. You can change a life with just one smile, one joke, one act of caring.
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