Before Lyme Disease, I thought I knew what love was.
I thought that partying with my best friends on the weekends was love.
I considered pooling your money on a Friday night for pizza, Mt. Dew, and a bag of Hershey's kisses to be love.
I assumed that a friend taking me to lunch was love.
I accepted endless teasing and poking fun at each other as love.
I regarded a goodnight kiss to be love.
I believed that the absence of criticism and the acceptance of my mistakes was love.
I figured love was when someone knew you from the inside out, or at least you think they do.
Then I got sick... Long term sick. The kind of sick that tortures you simply by removing your quality of life and peeling away the experiences that you used to think are what made life worth living. And surprisingly, I found that as your quality of life walks away from you, so do your friends, family, and neighbors as well.
I've heard many people say that you don't know what love is until you've been married for an extended amount of time. I actually believe that you don't know what love is until you suffer, or someone you love suffers and you choose to stay.
It's not often thought about enough. What would you do if someone in your life fell ill? Or became paralyzed? Or suffered a trauma? I mean, who wants to think about the worst that could happen? (Nor do I recommend falling into my friendly addiction of always "assuming that worst.") The answer to that question from the average person is commonly "I just don't know." And I suppose you can't truly KNOW until it happens... or can you?
I was diagnosed with a debilitating illness five years ago after I had watched my mother suffer from the same illness two years prior. Naturally, my knee jerk expectation from the members of my church and community was that the people in my church congregation (that I had heard talk of service and selflessness) would be darkening my door to offer listening ears, hands to hold, kind remarks, and spiritual refreshment. I had spent years hearing about how that's what we do for those who are suffering, so naturally, I thought all that talk was real. And it wasn't.
Now, don't get me wrong; this isn't to say that there are not wonderful Christians or people who do these things. This also isn't to say that I doubt the goodness of God, His love, or the truths that are taught in my church that I know in my heart are true. My effort to point this out is, simply put, to encourage all (whether you belong to my church or not) to try a little harder to be a little better.
My dilemma and the dilemma of MANY of the chronically ill is this...
Good, well-intentioned neighbors, church members, friends, and family are prepared for difficult trials that are short-lived. At the beginning of every difficult road people bring meals, and drop off brownies at the front door; but as time passes for the chronically ill, the meals turn into cravings for someone to talk to and offer comfort, and the brownie principle is quickly converted to sentences like:
And sometimes the obvious rejections of your illness comes in the form of a blank stare and an obvious discomfort as you sit across from someone trying to explain your illness that they are completely dissonant about.
But the problem with all of these responses from compassionless and unfeeling people is that it breaks down the chronically ill. Negligent and thoughtless words can shatter a soul. Lazy comments can cause a loss of hope. And shifting discomfort because sick people are "uncomfortable" makes us feel like a disease, not a person. And the worst of this reality is that eventually, all these hard knocks from people fade into lack of human interaction altogether; because nobody knows what to do for the seemingly never-ending "needy person."
We are not just bodies that lay in our beds. We are not lazy. We are not just looking for attention. We're not "the needy" that can be meagerly paid attention to in order to check off the "good Christian" checkbox every week. We are PEOPLE. And every living person that I've ever known has a basic human need for LOVE.
Christ never taught survival of the fittest. (The sick are meant to die where the healthy thrive and dominate.) Christ taught that "if ye have done it unto the LEAST of these, ye have done it unto me." -Matthew 25:40
I can guarantee you that if you spent your time with "the least of these," you would learn things that would change your life.
We live in a world that is virally shedding the idea that if someone is sick, the BEST call to action is to stay away from them as far as you can.
Not only is this completely against Christ's teachings, but it naturally shatters the human heart and allows cold blood to run through the veins of many people who are DESPERATE for someone to instill love, hope, or peace in them.
Lyme disease taught me something different than this world philosophy about people and love. And despite the cries for distance and shallow forms of "love," I would highly encourage you to apply the healing balm of FAITH combined with ACTION towards "the needy people" that you know.
I now know that LOVE is COMPASSION.
I know that LOVE is a listening ear, anxiously engaged to help in any way they can.
I know now that LOVE is patience, long-suffering, and choosing to STAY in someone's life even if they suffer long-term.
I know that LOVE has little do with parties and social cliques, and more to do with simple moments and acts of service.
I know that LOVE is peeling the one you love off the floor after they've passed out.
And LOVE is washing their hair because they can't wash it themselves.
LOVE is teaching one another things that help each other to be better.
LOVE is TIME. MAKING TIME to BE WITH and EMOTIONALLY STRENGTHEN each other.
LOVE is progressing spiritually and growing TOGETHER.
Love is much more than the messages that are screaming at us on social media and the news. The kind of love that we all CRAVE, is the kind of love that very few understand until deep tormenting suffering takes place. In all honesty, gifting someone with an act of TRUE love is HARD. It takes TIME out of your busy life and schedule, and it usually takes thought and preparation beforehand. It's not easy to truly offer the gift of love to someone who is different or suffering. But at the end of the day, true love wins and is the real answer to deep, lasting healing.
I recently received a comment on one of my social media posts in response to sharing some of my life on the farm.
"Farm life sounds magical!"
I chuckled to myself at that comment because my mind was automatically drawn to the not-so-magical aspects of farming. I'd hardly refer to mucking stalls, chasing goats that got out, waking up early to feed, and working with stubborn horses every day "magical." But it also left me in a reflective state of all of the joy that has come to me from living on a farm.
I have experienced greetings from the sunrise that feel crisp clean. I've absorbed golden summer evenings when the whole farm seems to glow. I've awakened to winter mornings where the whole world is blanketed in white and icy glitter fills the air and space.
I've spent rainy afternoons on my knees in manure aiding in a goat giving birth to a precious new-born, praying that they both might live despite the difficulty. I've cried along the riverbank in response to feeling God's deep love for me after a long week. I've witnessed miracles as I've watched the garden grow, and I've felt a connection with living creatures as I've trained and interacted with animals of all kinds.
I suppose with all those things in mind, farm life can at times be quite magical. It never ceases to amaze me the miracles that I witness every day on the farm.
One such miracle occurred a few months ago when I was feeling discouraged and frankly exhausted with the daily battle of fighting illness and attempting to live as normally as possible.
I was standing inside one of our large greenhouses one evening, taking note of all the little plants that were beginning to grow when I noticed a small butterfly fluttering its wings rapidly along the edge of the plastic covering the greenhouse. (For those of you who are unfamiliar with greenhouses; a greenhouse is usually a large half-cylindrical shape with one door on either end of the structure. Greenhouses are used to keep heat in so one can lengthen their growing season and begin planting even when it's still cold.) I noticed this beautiful butterfly fluttering its wings and mentioned it to my friend that works for us. He replied by telling me it had been there all day and probably wasn't going to get out.
Now, as someone who's heartstrings are easily pulled, for some reason my care for that butterfly increased and I took to the notion that I was going to get it out so it could live. I'd caught lots of butterflies in my backyard when I was a little girl so how hard could it be? My first thought was to cup my hands over it, catch it, and let it go as soon as I reached the door. Butterflies are less that submissive though, and although my attempt was sincere, it failed to succeed.
So I stood there, and I eyed it while silently coaxing it to calm down. After a while, it landed gently on one of the wood beams laid across the middle of the greenhouse. These beams are a little higher than waist high for me, and it wasn't too difficult to reach at the time. I somehow received the thought to just hold out my finger to it, and to my surprise as I did so the little butterfly proceeded to climb onto my finger. I didn't even know that butterflies would do that with a person! While my heart and mind were screaming with excitement I calmly ventured away from the edge of our little plant house and stepped slowly towards the door. All the while, the butterfly sat content on my finger. The moment I reached the door I stretched forth my hand and the little butterfly flew away with a sense of freedom blowing through its wings and gratitude soaring behind it.
I learned a lot that day about living creatures and how I truly believe that we can communicate with them in one form or another. It's almost like that butterfly could feel my intention that day and therefore trusted me to carry it to safety.
I also acquired knowledge that day about how God often works with us.
How often do we feel stuck, afraid, and panicked about life circumstances or experiences that are less than pleasant? And how often does God put forth His hand and pull us out of a scary and unknown place?
I often wonder why I felt the need to help something that was probably really insignificant in the whole scheme of things. It's just a little butterfly? Why would it matter to me? Similarly, all of us can often feel like we are small and insignificant in the sight of God. I would like to assure you that you are never insignificant in the sight of our Father. I cared about that butterfly. And similarly, He cares about you. He loves each and every one of us individually. Even if we often feel like an insignificant bug, to Him we are not. Each one of us has divine potential that is worth giving time and love too. It would do us well to remember that.
I often see myself in the place of that little butterfly. When I'm in the middle of pain from chronic illness or emotional turmoil, I panic with the realization that I "can't get out." That is, I can't get out by myself. I've often found that in those moments if I take time to be still, listen for the guidance of the Holy Ghost, and trust God's outstretched hand, He will very likely carry me to safety.
You see, God wants us to feel free, happy, and at peace. But life situations and the state of the world often discourage us from the good and the beautiful things that life is all about. So today, I'd encourage you to be still. Within all of the mess, and the chaos; and in the middle of all the pain and heartache that life has to offer, choosing to be still and take His outstretched hand is the tangible way to breathe in and absorb the good.
The reality of life is that no matter how bad it is, no matter what you've done, no matter who you are or where you've been, no matter how broken you feel, "His hand is outstretched still." (Isaiah 9:21)
This means that we can take His hand on a daily basis by aligning our lives with Him. This is done through mighty prayer, feasting upon the word of God, repenting every day, and striving to be more like him in word and deed little by little until we have come to a perfect knowledge of His goodness, mercy, and Being.
As we walk this journey of repentance, mercy, forgiveness, heartache, and healing, we can know with assurity that HIS HAND IS ALWAYS STRETCHED OUT to help us through. As we rely on that hand, we can quite literally be carried throughout hardships and turmoils just as I carried that little butterfly to safety. Know and trust God's intentions. He intends to love us and bring to pass our immortality and eternal life. There is no greater or hope-filled intention than that.
Take his outstretched hand. Know you are loved. And at the end of every discouraging moment, day, week, month, or year, remember that HIS HAND IS STRETCHED OUT STILL.
Many of us have heard of the theory of Pavlov’s Dogs, which teaches us the theory of Pavlovian Conditioning. In the 1890s, Russian psychologist, Ivan Pavlov, was researching salivation patterns in dogs in response to food. Pavlov predicted and was correct in the theory that a dog’s salivation increases as a response to food being placed in front of them. He later noticed that the dog’s salivation also increased as a result of hearing the footsteps of the person who was bringing the food to them.
This lead Pavol to a number of experiments that later proved that with a repeated conditioned stimulus, he could produce the same increase salivation in the dog. For example, when he produced the sound of a ringing bell to the dog, salivation would remain neutral, or stay the same. But after continuously ringing the bell right before bringing the food out, the dog’s salivation would increase at the mere sound of the bell ringing, even with the elimination of the food.
For a dog, food is an unconditioned stimulus, and salivation is an unconditioned response.
It happens naturally. So when you place a neutral stimulus in front of the dog (the bell), you get an unconditioned response (no salivation). But after repeated practices of the conditioning process (ringing the bell right before delivery of the food) you receive a conditioned response, (salvation from the bell, not the food.)
Let’s compare this theory of Pavlovian Conditioning to us, as human beings. For example, our need to protect ourselves from potential threats and dangers is an unconditioned response. It happens naturally. It’s hardwired in our brains and our muscles to be and feel safe. And if we find ourselves in a situation or circumstance where we feel unsafe it is an unconditioned response to remove ourselves from the situation or to apply the proper safety gear. This is why we teach our children to wear helmets when riding a bike or to look both ways before crossing the street. Because that is naturally the safe thing to do.
Staying safe is the right and proper thing to do in any dangerous circumstance, but that does not mean that we are free from Pavlovian Conditioning at times. So when something like the media or any leadership or authority comes out and tells us to “wear a mask” to protect yourself, naturally there are many who wouldn’t respond to that as a measure of safety at first, (because it’s a neutral stimulus). But after continuously producing information on mask-wearing as a form of “safety” we are naturally conditioned to comply, even if the information being produced is less than true. The mask then becomes a conditioned stimulus. Even if there isn’t a relation to safety from viruses by mask-wearing, we wear the mask and feel safe.
In the past three months, the world has been buzzing with information about COVID19. As a result, the whole world seems to be in commotion. Businesses are shutting down. People are now distancing themselves from their friends and neighbors. Our elderly loved ones are now dying alone, and those who are suffering from anything besides COVID19 are left to suffer by themselves. These are just the outward results of social distancing and the shutting down of America.
What we’re not seeing since this global shut-down is the increased use of pornography that destroys marriages and families, the increase of domestic abuse, and the increase of suicide rates because people were not built to live in eerie, lonely silence.
I understand the concept: we want to STAY SAFE. We have one global purpose under all of this bizarre behavior, and that purpose is SAFETY from COVID19.
So is what we’re doing really keeping us safe? Or are we simply conditioned to believe that all these rules and regulations are keeping us safe when in actuality, the government and the media have other intentions?
The intentions of the media and government are for you to study and come to a knowledge of the truth for yourself, but my purpose for this article today is to address and question the seemingly moral obligations we have to now wear a mask.
I am a devoted member of The Church of Jesus Christ of Latter-Day Saints. I believe in a living God and Savior who suffered and died to save us all. I believe we have a living prophet on this earth today. And I believe that the secret to a happy and joyful life is by having a personal relationship with our Savior Jesus Christ. And how do we do that? By learning all we can of His being and characteristics, hearing His words and counsel to us, and doing all we can to emulate Him in our day to day lives.
This past week, the Utah Area Authorities of the Church of Jesus Christ of Latter-Day Saints sent us all an email stating that they are now asking us all to “wear face coverings when in public,” and this short statement has left Utahns and other members of our church in an uproar.
Members who don’t want to wear masks are being ridiculed and blamed for further spread of COVID19, and members who are devoted mask-wearers are now pointing fingers and accusing non-mask wearers of the choice to not wear a mask as being immoral, or breaking covenants because we’re not being obedient to this new invitation for all to wear a mask. The overall feel of social media is now angry and accusatory because supposedly, our safety is being threatened if we don’t all comply with wearing a mask.
This article is not to generate more hate or anger amid the members of the church or to openly refuse any invitation that the general authorities of the church may offer us. This article is to point us in the direction that seems nobody has mentioned yet: and that is to our Savior, Jesus Christ; who is our perfect example for all life situations, traumas, or hardships.
As a devoted Christian, I know that Christ was never depicted in the Bible as one who would comply with social distancing or mask-wearing. Christ was depicted as a healer of hearts, wounds, illnesses, sins, and turmoil. Christ never avoided those who were sick or contagious, and He is often depicted in church videos embracing those who were burdened, touching the faces of those He was about to heal, laying hands on those who were suffering, and washing the feet of those who wondered if it was them who should be washing His feet. Christ went among those that society saw as “sick” or unfit to be among other people, and he dwelled with them and healed them.
Leprosy was considered highly contagious during biblical times. In fact, it was considered to be so contagious that those who suffered from it were often put in leper colonies where only leprous people could dwell so as not to spread the disease to other people. Does this not sound a lot like “social distancing?” And yet, Jesus never feared a single leper but instead touched them to heal them.
“And, behold, there came a leper and worshipped him, saying, Lord, if thou wilt, thou canst make me clean. And Jesus put forth his hand and touched him, saying, I will; be thou clean. And immediately His leprosy was cleansed.”
As Christians, are we not counseled in the scriptures to be like Christ and emulate what He did for others?
As someone who has suffered from a debilitating chronic illness for years and has spent those years interacting with others who suffer debilitating pain that is often ignored or downplayed by other people, I know firsthand the detriment of being left to suffer from illness alone. I know firsthand that loneliness will kill a person far faster than the illness itself.
I also know that the loss of HOPE greatly decreases one’s chances of beating any sort of chronic or terminal illness. I also have come to find that a single person that offers Christ-like love to someone who is suffering can produce healing effects as powerful as our Savior had and still has on his brothers and sisters.
But our government and the media don’t believe in “one nation under God.” They simply believe in one nation. And unfortunately, we live in a time where many of our religious leaders have forgotten where our power comes from and that as we live worthy to receive and practice priesthood power, we can use it to heal and serve those around us.
Jesus went against the grain. He healed others because they BELIEVED and had FAITH that He could, and similarly we can heal others as we believe, and obtain faith.
“And a certain woman, which had an issue of blood twelve years, and had suffered many things of many physicians, and had spent all that she had, and was nothing bettered, but rather grew worse, when she had heard of Jesus, came in the press behind, and touched his garment.
And he said unto her, Daughter, thy faith hath made thee whole; go in peace, and be whole of thy plague.” -Mark 5:25-27 & 34
Which part of those verses condemned her for touching his garment in hopes that she would be healed? Christ never condemned her. In fact, she was healed because of her great faith in Him. Similarly, Christ will heal us and help us to heal others as we lead with FAITH and leave no room for fear.
As someone who loves and sustains our prophets, I now feel deeply pressed to address the issue that one who chooses not to wear a mask is disobeying the prophet and church authority, and therefore breaking his or her covenants.
If there is any scripture outlining the covenants we make with God at baptism or in the temple that state that we are to obey every word the prophet states, then please correct me of my error. But I believe that our covenants state that we are to be obedient to our all-knowing, all-powerful, all-loving Heavenly Father.
Wearing a mask is a personal choice. It is not immoral to not wear one. It isn’t selfish to not wear one. And it isn’t an act of charity to sacrifice your health and well-being because people in authority have conditioned us to believe that we’re protecting others if we comply and keep our mouths shut. Our founding fathers would not suffer silence to be tolerated in a country that was built on freedom, one of our freedoms being freedom of speech. The scriptures never use the phrase "follow the prophet." We are instructed in the scriptures to follow Christ. Christ stated:
“Follow me, and I will make you fishers of men.” -Matthew 4:19
President Russell M. Nelson stated four years ago,
"In the coming day, only those men who have taken their priesthood seriously, by diligently seeking to be taught by the Lord Himself, will be able to bless, guide, protect, strengthen, and heal others." (April 2016 General Conference, The Price of Priesthood Power)
We are counseled to listen and take into serious account the things that leaders instruct us to do, but even Brigham Young once stated:
“I am more afraid that this people have so much confidence in their leaders that they will not inquire for themselves of God whether they are led by Him… Let every man and woman know, by the whisperings of the Spirit of God to themselves, whether their leaders are walking in the path the Lord dictates or not.” – JD, vol 9, p. 150
Later Ezra Taft Benson quoted J. Reuben Clark Jr. when he said:
“We need the constant guidance of that Spirit. We live in an age of deceit. “O my people,” said Isaiah in the Book of Mormon, “they who lead thee cause thee to err and destroy the way of thy paths.” (2 Ne. 13:12.) Even within the Church, we have been warned that “the ravening wolves are amongst us, from our own membership, and they, more than any others, are clothed in sheep’s clothing because they wear the habiliments of the priesthood.” (J. Reuben Clark, Jr., CR, April 1949, p. 163.)
Our prophet is a man to be respected as a prophet of God and I fully love and sustain him. With that said, our apostles and prophets have counseled us many times to seek personal revelation. To wear a mask or not is not putting my personal morality on trial. If the prophets or apostles advise us to do anything that is not backed up with scripture, it would do us well to fast, pray, and receive guidance from God himself via the Holy Ghost.
Even our beloved prophet Nephi, in the Book of Mormon, taught us the importance of trusting in God instead of trusting in the arm of flesh:
“O Lord, I have trusted in thee, and I will trust in thee forever. I will not put my trust in the arm of flesh; for I know that cursed is he that putteth his trust in the arm of flesh. Yea, cursed is he that putteth his trust in man or maketh flesh his arm.” (2 Ne. 4:34.)
The arm of flesh in our time includes government authority, media, medical professionals, sometimes church authorities, and ANYONE who isn’t promoting personal righteousness and following God before anyone else.
We now live in a time that teaches the exact opposite of what our Savior teaches us in the Bible and the Book of Mormon, and if you’re truly going to argue about “obedience to the prophets,” shouldn’t that mean all prophets that have ever lived; including those devoted and valiant men we read of every time we open God’s word?
I plead with you my beloved brothers and sisters in Christ: now is the time more than ever to seek for personal revelation. The more we talk to God, the more He’ll talk to us, and we’ll know without a doubt in our minds that it is Him who is speaking and not the thousands of other voices who are so much louder in our day.
Might I suggest that the solution to COVID19 is not mask-wearing and social distancing, but personal righteousness and repentance? This does not mean that if you practice repentance and personal righteousness that you are guaranteed freedom form Coronavirus or any other hardship. But it does mean that all sufferings that you are given at this time will be for your benefit, (D&C 122:7) and that God will not suffer your life to end before it’s time until you have finished your personal work here on the earth.
Repentance and personal righteousness are the balm this society so desperately needs. For when we repent of practicing the harmful traditions of men and instead practice those attributes of our Savior Jesus Christ, we are more inclined to serve, love, and live as He did.
Instead of letting society condition you to believe every rule and regulation that is robbing us of our freedoms, may we let God sculpt and shape us into the people that we must be in order to be protected and empowered during these calamitous times.
I may not be a mask wearer… but I am someone who loves God with all my heart. And I know that with choosing the path of God sometimes comes persecution and suffering for His sake. I’m not promoting wearing a mask, or not wearing a mask. I’m promoting personal righteousness, repentance, and personal revelation. If you wear a mask, then that's your choice and I will not ridicule you for doing so. But if someone chooses not to wear a mask, they should not be automatically shunned and mistreated because of it. I don’t believe that Christ would ever do that. Because I know my Savior, and His love for us and faith in His Father extends much further than that.
Or the modified version: Who knew that everyone would join me in isolation!?
My face in this pic perfectly illustrates how I feel about the current state of life and the world! Oh, the irony of it all for someone who is chronically ill!
I started taking small baby steps out of my house and living more like a "normal" young single adult about a year ago, and even then I found it terribly difficult to fit in and be "normal" after 3+ years of being mostly home-bound due to Lyme disease.
The truth of the matter is that when you have an illness of any kind (even if it isn't contagious) people don't want to be around you because it's completely unknown and very scary at times. I found it incredibly difficult to find a friend that I could really count on, my social life was non-existent for the longest time, and whenever I expressed how lonely or suffocatingly bored I was, nobody seemed to understand, and nobody wanted to understand.
So, there's a part of me that wants to say to everyone that "corona-virus is all in your head, you're using it as a crutch, you just need to stop being lazy, get a job, and do yoga and you'll be fine!" just like I was told by countless amounts of people. But, the truth is that those comments hurt and are completely false to those who are suffering from any severe illness.
So... I'd invite you all to take this as a time to instead be KIND.
Illness has a way of bringing out the pure selfishness in people, or the pure love in people. The good news is that YOU CHOOSE which one it brings out in you. I never had any "tips for isolation and quarantine" articles floating virally around the internet when I took my first steps into isolation. And so, with those lessons learned, my tip to you would be to use WISDOM at this time.
Isolation is something that will kill you long before the illness will, and many people that I've seen die of Lyme disease died because they gave up because they had nobody. Because fighting a battle without helping hands and a team of people that love you is very VERY difficult.
Remain close to those you love with all the resources we have at this time because that's what will get us all out of this place that we're in.
Sending you all love, hugs, and support during the COVID-19 crisis!
Comment below if you relate to this!
I call this little phenomenon of the chronically ill, "The Pain Cycle." Tell me if this sounds familiar:
You just got through your last pain flare, and things are looking up. Maybe you go a few days... or even a few weeks... or if you're really lucky a month or so with low pain levels, and then *BAM!* Right back down where you started with more of that familiar friend we call pain. Especially with Endometriosis, this is a hard battle for me because I can always feel a big flare coming a few days before and the fear cycle that accompanies this is very real.
I've done this for 5 years, and although I see much improvement the pain game is tricky, frustrating, and makes me worry seemingly endlessly!
So, if you have a friend who suffers from any form of chronic illness or chronic pain, compassion is key. The best thing you can do to help stop this cycle is to get them out of their head. Talk them through it. Go on a walk (even if it's short and slow). Listen. Be there. This is a normal thing to experience when you're chronically ill, and we simply need people to walk the hard road with us, ready to help when we fall back to another flare or let the fear of an oncoming one interfere with daily life.
If you find yourself in the pain cycle like I so often do, remember to ground yourself and stay present. Remember that your pain doesn't define you, but your resilient and enduring spirit does. Don't give up and remember that there is always hope and happiness ahead!
This is such a COMMON MISCONCEPTION about chronic illness!!
I am finding myself escaping judgment like this the more I discover healing and am able to do more things. But, for the first 3 years of my Lyme journey when I was home-bound and bedridden, I received many comments about how lucky I was to just lay around at home all day.
To this day, I still receive comments about how my illness gives me "so much more time." That's just simply not the case.
Whether you're chronically ill, or healthy as can be, managing time is something that everyone has to learn. And an illness adds extra to the list of to-do's and compels one to re-prioritize.
It's a DAILY, CONSTANT battle.
Daily routines that if I don't do I'll be sicker than I already am.
Chronic illness doesn't make life any easier just because I can't hold a full-time job or go to college full time. It's not a constant vacation, and it's not an excuse for me to be lazy. On the contrary, it often adds to my life because I have to work twice as hard to acquire QUALITY of life.
Don't assume that anyone's lot is easier than yours. Instead, offer compassion and love. I know I have it easier than some of my other chronically ill friends, but that still makes me journey hard for me. And through the hard, I'm learning how to ask for help and rely on God and the people who love we me the most to give me the daily love and help that I need. We are all learning how to do that, and we will be a lot more successful as we work to encourage and help one another through it all. Asking for help and not being able to do "normal" things is nothing to be ashamed of. My story looks different than the average young person, and that's okay. My job is to live life with this illness to the fullest that I can manage.
Comment below if you relate, and remember that taking time to rest and do treatment is nothing to be ashamed of!
It is one of those weeks where I feel the tired vibe very fiercely, and I've been praying hard lately for strength through the weariness.
I believe that everyone can relate to this in one way or another, so you would think that this isn't something that is commonly misunderstood. Everyone knows what it's like to be tired right!? Well yes, but there is a difference between being tired, and being BONE tired from fighting the good fight for years and wondering if you will ever have a month or a year free from the pain. I regularly have to remind myself that when someone tells me they are tired it is, more often than not, a cry for help.
I learned this week that there are simply times in life when sleep isn't necessarily the remedy for this form of exhaustion and weariness. Oftentimes LOVE is what can invigorate a wearied soul.
Never underestimate how far a phone call, a hug, a hand to hold, or a kind word can go to someone who feels weary. I will always be a firm believer that love conquers all, and so in our moments of pain or healing may we all be able to offer a healing hand to those who are incredibly "tired."
Comment below if you can relate to this form of being "tired" and what helps you get through it!
There are times when winter is reminiscent of being swallowed by a deep black hole. And if we're not careful, we may forget the light that's right behind the cloud cover.
I hold deep antipathy for darkness, and I often look up at the sky in the wintertime wondering if the bleak gray of winter will come to an end. It's common to hear talk of "winter depression" or "seasonal depression," but I almost never hear talk of what it's really like, or what it even really is. I wish I could say that wintertime was merely a battle with sadness, but I've found it's often much deeper than that, and the PTSD that comes from long months of illness is as real as the PTSD that comes from fighting in a war. In all reality, this is a war for those of us who push through winter with chronic illness, one heavy step through deep snow at a time.
Last year at this time my family was walking right into "The Lyme Flare of 2019." I took up my bed in February of 2019 with pain so deep and penetrating that I couldn't lay on one side of my body for too long without having to sorely role over to another side to release any pressure that was weighing on my pained muscles. I had been in this place many times before, but this time was a complete recession from how I had slowly been improving throughout 2018. Like falling down the stairs or off of a tall cliff, I looked up at this beast referred to as a "Lyme flare" that I was somehow facing once again and felt completely destitute and defeated.
At the time I had been struggling with piercing feelings of insecurity, worthlessness, and the fear that I will never be enough. I had been striving so relentlessly hard to work through life on my own, that my mental health had completely receded. I prayed for relief from the monsters inside me and instead of relief I was left to cope with physical pain and my ability to do anything removed from my grasp. And it was in this time-frame that I resolved to surrender everything to God and hope that by some miracle I could be pulled out of this darkness that swallowed me while I lay helplessly in a bed or on a couch. The "winter depression," as one might call it, was so heavy that I often felt completely paralyzed. I remember at this time that every time I could manage to glance out of a window my eyes would be met with gray skies and cold frigid air.
What I didn't know at this time was that this wintry flare that left me feeling completely lost and pained, ended up being one of the greatest blessings of my life, and resulted in one of the greatest lessons of my life.
Up to this point in time, I was living subconsciously as if I have to do everything on my own for quite some time. I'd never done anything half baked, and I'd always found myself meeting my problems and pitfalls with ambition and hard work. Unfortunately, there are things in life that one cannot possibly do on their own, such as facing monstrosities like Lyme disease, betrayal, or abuse, and I often found myself passing blame to myself for the misfortunes that happen simply as a result of mortality. I blamed myself for my negative feelings, and I numbed myself to my heartaches and hurts as a way to somehow prove that I was strong and that I could heal and survive on my own.
If there was anything that "The Lyme Flare of 2019" taught me, it was that I simply could not do it on my own. I had been driven to a place where burning over my pains with work and busyness was no longer efficient because my body would not allow me to. And as one can imagine, I faced my pains with the quiet allowance of feeling. It was excruciating. But with that, I learned about grace.
It was as if God had answered my cries for relief by giving me permission to stay in bed and sleep for a month or two. I felt His love and support even when all I could do was rest. And surprisingly, life went on. He took care of what I couldn't and I felt great peace and comfort that this was a time of RECOVERY, STILLNESS, and HEALING.
You see, we are not expected to pass through toil and trial on our own. And in a world where I have heard the phrase "God doesn't give you more than you can handle" run freely from the mouths of those who have yet to taste bitter cups in this life, I commonly assumed that there was something wrong with me because THIS was more than I could handle.
Lyme is more than I can handle.
Betrayal trauma was more than I could handle.
Watching parts of my family fall apart because of this disease was more than I could handle.
Living day, after day, after day for years watching my mother in pain and suffering that is seemingly endless is more than I can handle.
And the heartache that comes from isolation and loneliness is MORE THAN I CAN HANDLE.
The truth is that there are many times in life that God will give us more than we can handle and that is simply because we were not meant to handle it by ourselves. We were given grace, tender mercies, each other, and a Savior who loves us tremendously. So as we pour out our aching souls to Him, He gives us grace for grace, and mercy for mercy. Who knew that lying in a bed in debilitating circumstances could teach me that I am enough, that I don't have to "handle" everything by myself, and that just because I can't handle something doesn't mean that He can't.
So now I face this winter with similar anxieties, pain, and emotions boiling to the surface. I still glance out the frosted over windows to see bleak skies and frigid air. I still often find myself in deep weariness of soul because there are some battles in life that do not merely end.
The increase of symptoms and the seasonal depression can still weight heavily on my body and heart, but this year I fight with a changed perspective. This year I fight with quietly loud faith knowing that I am not fighting alone and that I don't have to face the scary aspects of life on my own.
The winter will always pass through where I am. The skies will always gather clouds and the storms with often rage. The cold will often chill us to the bone, and sometimes coats and scarves won't always be enough to warm our troubled hearts. But one thing I can guarantee is that bright blue skies will always appear again. Light conquers cold and dark. And there is often something beautiful awaiting us in the middle of these merely bleak or utterly terrifying winters of our lives.
The trick is to remember in the middle of them that as we strive, we are enough, we're not alone, and sometimes you can even find some beauty within the storm. For I always thought that snowflakes could turn out to be quite beautiful anyway.
God's grace can and does sustain us, and I pray for that as we persist through another winter.
"I feel like I have no purpose!"
I've listened to myself and others express this many times throughout the chronic illness journey, and it's time that we bust this myth that the chronically ill have no purpose simply because their lives look different than the average person.
I recently had someone close to me express how they were so excited that I was opening a gift shop because I would now "have some purpose." As if I haven't had purpose for the past five years of my life... On the outside, it may seem like I don't have a purpose. I spent 2+ years in a bed, home-bound, and unable to really DO anything. But there's a whole side of chronic illness that is just not seen.
I may have spent 2+ years home-bound, but I also spent my time participating in grueling treatment protocols, resting, and HEALING. I invested my purpose is growing my heart and my mind. And because of that, my entire purpose for life shifted.
Yes, I don't have a 9-5 job. Yes, I live with my parents. Yes, I've spent a lot of adulthood in pain... but through it all, my heart was growing in love, empathy, patience, and hope. Lyme has instilled in me a deep passion to advocate for the sick and love the afflicted. Lyme disease did not rob me of my purpose, it clarified and expanded my TRUE purpose. Lyme disease softened my heart and helped me discover who I am truly meant to be, and it continues to do that for me every day!
If there is anything I can say to the Chronically Ill it's this:
You have worth!
You have purpose!
You have so much to give and offer!
It simply takes time to know and understand that shift that is taking place inside you. May we all be content and patient as we discover our purposes through all the suffering.
Every time I see this meme floating around the chronic illness community on social media I can't help but laugh out loud, mainly because it's so true that it's funny!
This Chronic Illness Truth applies to anyone who has a chronic illness that affects their joints, or even just anyone who is home-bound because of their illness. I really want to focus on the aspect of being homebound for a minute here...
I am a young, single adult that lives with my parents and I live in a household of all sick people. My parents and I have chronic Lyme disease, and we survive this illness by working together and yes, we spend a lot of time at home because we're too sick to go out, or if we do go out we pay for it later.
With this situation of mine, I always find it very frustrating to receive comments from people about how "I don't put myself out their enough," or "I just need to get out more!" This truth is important in order to demolish the stigma.
I am not a recluse that doesn't get out enough. Those who have chronic illness are sick to the point where there are days when leaving the house is unhealthy for us. Those of us who are home-bound are often in pain and managing to the best of our ability, and if you do happen to see us out we're either having a good day, or pushing through pain, or both!
So my message today is to REMEMBER. Remember to call the friend you haven't talked to in a while. Remember to invite us even if we can't make it. Remember to be present in our lives just like you would any other friend. It may difficult for us to navigate this illness, but we still intend to live a full life and we still need love, just like everyone else.
If you're home-bound because of chronic illness... you are still of great worth. Never forget that.
Comment below if you relate!