Me and my youngest daughter, Shelby
Multiple Sclerosis: The Never-Ending Fight
Carol Ann Evans
WARNING: You will not like the blatant truth and resulting opinions in this article. Please, read at your own risk.
1.25.22
In the beginning, 40 years ago when I was first diagnosed with Multiple Sclerosis, MS, in 1981, I was told that it would take the four D’s to overcome the disease: determination, dedication, discipline, and desire. Well, I can honestly say that struggling with MS over the last four decades has brought me to the end of the road for each one of those "D’s" and what I truly received after mastering all the negative aspects of MS; during all those years of unwavering, Herculean effort, was something quite less than. The four D’s I have been left to deal with currently are: Disappointment, Decrease in mobility, Decline in health, and Debt. Anyone who tells you that a journey with multiple sclerosis, MS, is full of joy and fun has not realized the gravity of this horrific disease. When anyone says MS is a joyful experience while looking squarely into the daunting face of this dreaded disease, in my opinion, they are not facing reality or are not a true victim of MS.
I agree with much of the current literary review, there are many different symptoms of MS and the severity of these symptoms present themselves in a wide range of challenges, as well. People with MS may be riddled with fatigue, imbalance, destitution, weakness, blurred vision, numbness in hands and feet, uncontrolled tremors, spastic muscles in the limbs, dizziness, paralysis, hopelessness and so many more that the list of symptoms seems to go on indefinitely. There are some able-bodied healthy people who may claim to have MS, but I assure you that a crippled, bedridden person who claims the same is more aligned with the forbidding reality of the damage MS symptoms can vastly trigger in the systems of the body.
It’s not to say that with medication, with therapies (most not covered by insurance), and with extreme effort, you can overcome some of the symptoms of MS. But when I see the cover of most multiple sclerosis magazines, parading the smiles of a person claiming to have MS but walking, running, and living pretty much a normal life, it is not the truth as I have come to know about MS. Most people can’t take the truth, or don't want to know the truth about MS, and why should they? Able-bodied people don't have to think about it and should they try and imagine a life with MS, most cannot even begin to comprehend the crisis that a true MS diagnosis brings with it. But, I feel, those of us left by the wayside to settle for crumbs and beg for help remain the true victims of this disease.
I still have clear discriminating memories when I was out in public with my young daughter, after getting my first motorized scooter. I am not one of the lucky MS people still enjoying a life without limitations, despite diagnosis. So, in 1996 while trying to learn to cope with MS symptoms and learning to live with debilitating effects of MS; my daughter and I went grocery shopping. I was struggling to navigate my motorized scooter through crowded grocery aisles steering with weak arms and hands that disobeyed my commands. I thought maybe I could at least perform one of the mundane tasks of living, (grocery shopping), while also enjoy some time with my young daughter. Instead, rude strangers stood in my path and blatantly scolded me for being out in public and accused me of stealing my own scooter! The public, male and female alike, first loudly jeered that I should seriously consider ending my life while others harshly jeered that I should "get someone to help me" so they, the public, don't have to deal with looking at me.
Really? I thought. Able-bodied strangers were scolding me in front of my young daughter about my right to be alive, and further, my right, akin to their own, to be in public? Still, the burning question, I have been pondering every now and again, and wished I had the forethought to ask to those rude people back then, is this: “Are you willing to be that “person to help“ and "are you willing to donate your time out of your own busy schedule to help people, like me, in need?; and are you the person that gives their time freely without expectations, the “person” that helps me; (or any disabled person, for that matter), come rain or shine in good times or bad? Yes, disabled people need help during their perceived good times, as well as, their observed bad times. And the most burning question of all to ask the rude public: "do you really think your unrestricted displays of rudeness and disrespect are in anyway helpful or called for?"
Furthermore, my own husband, along with many other spouses of people with MS, has had difficulty dealing with the symptoms of MS and has at most times been unable to help me, especially at the emotional level; but there have been plenty of times he has been unavailable to lend physical assistance, as well. So why do people, spouses, and strangers, think they need to ridicule, condescend, and sidestep the disabled? Fear. Yes, fear. Fear of the unknown attributes of the disease process of MS. Fear of witnessing the possibility of MS's horrific disabling symptoms. Fear of not knowing if one can cope with the harsh, disabling realities MS inevitably produces. And further, if fear is not the culprit, selfishness is.
If you are a spouse or family member of a person struggling with MS, I commend you. However, you never have the indignant right to abuse those less fortunate than yourself. So, if you feel your life has been negatively impacted by MS, you are not alone.
The entire world population gets impacted by negative occurrences at some time in their lives. That being said, you, the spouse, family or caregiver, like everyone else, needs to decide to either adapt to the changing situations out of your control or deny the reality of the same situation and admit your pitiful plight.
My two-year-old young daughter had the intelligence to realize the fact that "things happen in life" so I have no empathy for pathetic people who run and hide from life circumstance.
An acquaintance once told me that my husband, "knew exactly what he was getting into" when he married me. Really? Why would she think that? Has society ruled MS sufferers taboo beings unworthy of existence? Would the ruling change if they themselves were diagnosed with the disease? Does anybody really know what they're getting into when they marry? Did she know that she indirectly labeled me a complete waste of time and someone unworthy of love? Let alone someone unworthy to marry? Her indignant exclamation seems to carry a common theme, but does anybody "know" exactly what disease, accident, or illness their spouse, sibling or friend will end encounter during their perspective lifetime? Would "my friend" have done anything different if she knew her own spouse would become ill or disabled?
MS, as a diagnosis and disease process, has received much undeserved press in the past. People who don't know anything about MS and who are unwilling to learn simply run and hide from the slightest discussion of this disease. Actually, a MS diagnosis, used to be pretty much a grim sentence with not much hope of leading a productive life. Even though much has changed (for the better) regarding the treatment and prognosis of MS, especially since Jean-Martin Charcot's discovery of this disease in 1868; MS still carries a heavy societal, discriminating sentence.
Rude people are usually unhappy people and possess a weak nature with lack of self-confidence and lack of self-respect. I have realized that disabled people act like a mirror to the public. Mostly causing the public to reflect upon themselves, their own vulnerability and wonder what if? What if they were in my situation? what would they do? I have not only answered these questions literally for many inquisitive able-bodied people but found myself compelled into explaining my own situation to many fearful strangers so they would understand I am still a person, just a person, who uses a scooter for mobility. Imagine that? People are so scared about their own perceptions and misconceptions that the disabled feel compelled to alleviate the wild fears of the able-bodied public. It's true and quite alarming, I might add.
So many selfish spouses have ridiculed and judged their own husbands and wives who have been diagnosed with MS and selfish spouses have even withheld the help their partner has desperately needed because of the disabling symptoms of MS. Why is that? What do indignant spouses hope to gain by neglecting their partners? To the rude, neglectful spouses and people discriminating the disabled, I ask, "would you tolerate your kind of behavior if somebody acted the way you did to me, or any disabled person for that matter, but instead your rudeness was directed toward one of your children or family members?" I doubt it. The truth is, we are all an accident or an illness away from a disability.
Although community awareness for the need to help the disabled and the resourcefulness of the organizations to provide help to the disabled is, slowly but surely, improving; most people act very indifferent when it comes to dealing with something or someone they truly do not want to admit to nor understand. Nor do people readily wish to lend their charitable time given (without recognition or reward). People rarely lend time to actually, effect a difference, or help any disabled person struggling in a wheelchair or scooter attempting to just plain survive. And again, why should they? Because the numbers of people being diagnosed with a disabling disease is compounding. Sooner more than later, we will all know someone with MS.
I’ve seen it happen so many times that a disabled person, in a wheelchair, wearily smiles while a stranger nonchalantly gives them "advice" in an animated, dramatic manner; usually saying things like “you should watch where you are going” or “you need to slow down in that chair” all the while waving arms and pointed fingers flail about. Are these banters truly advice a person can be proud to give?
Anybody reading this who doesn’t truly know my story might say that I was a very opinionated person and I say back to them, "why not?" I have suffered longer than anybody else I know and every one of those people have passed on. But my doctors and healthcare professionals know me best, and I’ll choose to only listen to their judgement of me. Every one of them praises me of the Herculean effort I have given to overcome this disease, despite my defeat. And I also give praise to myself, undeniably and wholeheartedly. Again, I tell you, the “fight” to heal from MS is a fib and most people can’t handle this truth. There is no cure and the fight is futile. But, nevertheless, a person struck with MS must continue fighting, charade or not; because that’s all MS usually allows you to do. Fight. Fight for the right to get treatment, fight for the right to be heard, fight for the right to be loved, fight for the right to rest, and even in some cases, fight for the right to die.
Realistically, a big part of living with relapsing remitting progressive multiple sclerosis (MS) has been learning to overcome the various obstacles I have been forced to face because of this disease. It takes a lot of trial and error, and a huge amount of courage to face these obstacles. While I feel strongly about reaching out to others to get help and support, I now have reservations because I have been literally ignored and flat-out denied that help and support for so long. And so, I ask you what happens when one cannot help themselves anymore and become strictly dependent upon someone else? If that person is not blessed like I am, with a wonderful child, my youngest daughter, who has stood by my side and helped me her entire life; a disabled person who needs help; ends up in a state funded care facility for the poor, pretty much neglected. Or worse, they are condemned to die.
The simplest tasks become more and more difficult and just plain intimidating when you have relapsing-remitting progressive MS. When I reflect back on “darker” times with the disease, I realize that living with MS you are always in “darker times “, and you truly learn to be grateful for crumbs but not in the most negative aspect of that gratitude. I guess you learn to be grateful for the “littlest” of little things, is probably the best way to explain it. Most people, especially in today’s climate, will never, ever realize that concept (grateful for the littlest of little things) by themselves, alone, isolated feelings with the littlest of little things becomes a way of life when multiple sclerosis ravages your body preventing you from doing anything worthwhile in society's critical eye.
Honestly, I think it is important for anyone living with MS: to find that part of you that brings light to yourself and boosts yourself up, but even so, the truth is, dealing with MS symptom after symptom day after day, you may not have the actual ability to find the “lighted part of yourself” and even if you do find it, time limits that accompany this disease might not let you focus upon it, let alone enjoy it. To forget everything else in your life; even for a little while; becomes an enormous request that is rarely fulfilled when you are plagued with the symptoms of MS.
For me, every experience with joy I have managed to find, has been taken away by the disabling symptoms of MS. The MS ghost of disability that permeates your body is relentless when you fight this disease. This is one truth I have learned from having this disease for over 40 years. It doesn’t mean that I haven’t searched for other "light and joy-filled" activities, because I have. The truth of the matter is: it is a fact that MS is a horrific, all-consuming disease and it will not cease to seek out any kind of happiness you find and attempt to destroy it. After a while (especially for decades) it gets difficult to find the energy to fight for these “light filled” seconds in your life. Don’t get me wrong, you can’t give up, you have to keep fighting, but the lighted "moments of joy" comes fewer and further between as the disease progresses.
Due to my relapsing-remitting progressive MS, I have discovered ways to express my creative side through jewelry making, (I made the necklace I'm wearing in my above picture), drawing, writing, and exercising, but this "expression" is less of a priority these days. I am still struggling with severe symptoms of this disease, and I am losing the fight. My admittance of defeat is not an admittance of failure, but it does impact how I feel about myself and how I experience my own, personal joy. I do think of returning to these activities one day, but that those thoughts only remind me of a part of myself that I have lost.
Even though research over the past couple of decades unanimously conveys the message that practicing short bursts of mindfulness meditation reduces stress and promotes mental, cognitive, as well as, physical health; I convey a very different message. My message regarding meditation is that current social circumstances have a permeating effect on all positive thinking-based activity, including mindfulness meditation. Stress reduction is one of the most important things you can do for yourself when you have an auto-immune disease, like MS. That’s why it’s so difficult when you are no longer able to do the things that allow you to release stress; like hobbies that require physical dexterity or physical endurance, you no longer have that avenue to release stress. When someone struggles with MS, it all boils down to the capability to perform within the confines of your disability that dictates the extent of your "relaxing" mindfulness or meditation.
It’s a whole different ball game when you have a disease like MS, or any autoimmune disease, for that matter. Some MSers are considered lucky if they have helpful, dedicated spouses, friends and family to help them through the incredibly challenging stages of MS, caring for someone with MS most ofter is a double full-time job for even the most healthy caregiver. Further and in addition to, the physical demand a caregiver performs on a daily basis, there are enormous financial demands, as well, as the medical costs for uncovered treatments, which is most treatments, I might add, compound quickly and bankrupt the most frugal spender. My own financial debt from this disease is well over a quarter million dollars.
Is it really luck to have a lone family member commit to the care of an individual with MS? No, more like a responsible, loving commitment, isn't it? Plus, isn’t there also some sense of responsibility of the village, or even a religious community to help the elderly, needy, and disabled? No, in my experience there is not and I doubt if anyone will muster the courage and time needed to help someone not in their own family blood-line. Of course, the people claiming their unableness to help are the very first to cry "poor me" should an illness or disability knock on their door. Typical. I've witnessed this truth far too many times.
And, continung with the care required of a disabled person; after a long day of struggle and the resulting exhaustion; who is available to help the disabled MSer search for needed new drugs, new doctors, or new treatments? In my case, no one. It was mostly up to myself, or my wonderful, caring youngest daughter. I have sacrificed the energy it took for needed exercise, or the energy it took for bathing, washing clothes, and the like; just to have the umph to dedicate to a few minutes toward research for these needed alternative therapies and experimental treatments; even though most searches resulted in "dead ends". But most of us, MSers, are not even as “fortunate” (if you can call it that), as I am. And while the MS organization claims to help some people with MS, many of my requests have gone unanswered, in a category of the other unworthy people. So, I, along with an assortment of anonymous other people; continue with the struggle of battling this disease alone, one day at a time, void of any future hopes or dreams.
People with MS become scavengers, your life becomes one of hunting down the cheapest medical equipment, the latest research in hopes that you could get on a trial or the latest breakthrough to guide you to a new drug, therapy, or supplement. A person with MS rummages emails, newsletters, and websites in hopes to help themselves relieve the dreaded symptoms of auto immune disease that currently plague their body. Nevertheless, a MSer gets easily exasperated by the ever persistent daily fight to; get out of debt, get out of neuropathy pain, and get out of the halls of loneliness and depression. Yet the MS sufferer will try in vain to do this research to not become the burden upon others they ultimately befit.
In my experience, I’ve tried therapies and treatments beyond belief. It started at the Century Wellness Center back in 1994 where I received countless IVs and thousands of injections in my legs and other various parts of my body. Next, I’d like to mention chiropractic care, however, people with MS should consult their doctors before seeking out this type of care but when done correctly, it has made a positive difference in my life. Also, upper cervical chiropractic care, is another form of chiropractic that is more gentle and just as effective, I sought out upper cervical chiropractic care for over 14 years with good results. After that, there are a variety of therapeutics; healing touch, therapeutic touch, quantum touch, reiki, biofeedback, enneagrams, hypnosis, holographic healing, The Silva method, NLP, homeopathic, massage, acupuncture, physical therapy, strength training therapy, balance therapy, affirmations, prayer, angel therapy, shaman counsel, crystals, minerals, herbal supplements, nervous system retraining, EFT, TAT, DNRS, magnetic mindfulness, and more. I have tried them all.
When my symptoms flare up, usually every night, I no longer get angry, but feelings of hopelessness and despair are always noticeably looming; waiting to invade my thoughts, if I faulter one second and let them in. If I do surrender, a mirage of hopeless feelings consumes my thoughts at the very depths of my soul and make me feel like "things" are about to end. I have trained myself to just sit with and accept these feelings, releasing their negativity to the void and most times it works. I regain emotional control.
Concerned people’s first reaction, wishing to help and offer assistance, is to try and "fix" things, but, for me, going through deep depressive moments, although I am very grateful for the help, I just have to navigate my own way through; most times.
I am going to be completely honest; I never know what’s going to happen each and every day in my life. Many days, I struggle just to stay alive. I am overweight I’ve been on a constant diet for decades, and have decided that I still am going to enjoy desserts and other foods that I love despite what my total body index says, 29.9. My borderline TBI voids my ability to get any kind of weight loss therapy assistance from my insurance. even after suffering with this disease for so long and managing to stay off the enormously expensive acceptable drugs offered today for the treatment of MS. Yet still, according to my doctors, insurance companies hold to the strict rules and regulations regarding insured weight loss therapy.
I rarely look in the mirror anymore, why would I? All that I would see is someone who has been defeated, unable to heal, and is forced to live with a painful, debilitating, chronic disease. People may forget the horrendous amount of pain this disease causes every day, or maybe the medical establishment tries to forget about this aspect of MS. Pain is ever present and ravages one's body when you are confined to a wheelchair with MS. But despite that, I have learned to accept my body for what it can do, and I appreciate every action it does for the betterment of my life. I also thank it every day and let my body know how much I appreciate it, just the way it is. I also remind myself that having MS is not my fault, whether you are of the opinion that people choose their lives and their own destiny, I can assure you that I most definitely did not choose MS, nor would I wish it upon anyone. It is truly a devastating, debilitating disease.
I could pick apart my body, and how it has become weak in certain areas, and how it can’t move and do what it once could; but that would be an extreme waste of precious time. There are things that I can still do and while I perform them in somewhat a different way than I once did, I will still strive to complete any and all activities that I desire.
Speaking of desire, one of the "D" words, if you remember I mentioned at the beginning of this article. The desire to get to know the feelings and thoughts that have made up one's life and world is a very challenging journey, for anyone. I am learning that feelings, more than thoughts, have a definite impact positive or negative upon one’s life. I focus now on all those feelings that have made up my life and my world, including those from past lives. Any feelings from my ancestry that has made an impact on my current situation, prioritizes the task at hand to change those feelings and let some of them go. Needless to say, it has been a very enlightening trip. I encourage anybody to challenge themselves to go back through their ancestry and even past lives, if you believe in that, to get some answers, understand and release emotions and therefore, move forward with your life.
Finally, after all these years, suffering with this dreaded disease called MS and every other attribute that comes with it which mimics most other auto-immune deficiency diseases, I can truly say I will never look back. From a past viewpoint, there are no rewards for a job well done; there is no restitution for time spent; and there is no positive side to dwell upon it. I firmly believe it is best to move on forward, no matter how tiny those forward “steps” might be (as most of us true MSers are confined to wheelchairs). Create your own world, even if it only resides in your head. Search for new treasures, however little they may seem. Appreciate every “little” thing in your life, strive not only to make your life better; but strive to make the world a better place with you in it. End article.