Sway or Bend, But Never Break
- Shonna L. Tropf
- Jul 10, 2018
- 18 min read
A few months ago, before the RSV set in and sidetracked me for four or five months, I had been out on a little stroll up on Upper Gold Camp Road, a popular scenic drive that has multiple trailheads along the way. It had been one of my favorite areas to explore due to the fact that there were so many different trails and the unique scenery that each one provided. On this particular day I was walking what I refer to as "the horseshoe," a relatively flat hike that used to be an old gold camp horse trail that rings the side of a couple of different mountains, making a sort of a horseshoe with the main road zig zagging down in the middle of them.
The trail is lined with trees and boulders and a small creek runs along the north side of it. It's quite a lovely trail that's normally heavily populated. However, on this particular day Lani and I pretty much had the trail to ourselves, except for the occasional passer-byer. With my new slower hiking pace, that is on the rare occasions I actually can make it out these days, I had time to really reflect upon my surroundings. At the marvels of Mother Nature. At the glory of what God made. I noticed the colors of the granite that had crumbled to form the old pathway under my hiking-boot clad feet. I noticed the crisp, clear water of the creek peaking out from under the dirt-covered ice. I noticed the ferocity of how the ice cycles clung to the logs that lay across that very same creek as well as the ripples in the ice that signified the captured movement of the flowing water as the temperatures dipped low enough to halt it's progression down the mountainside, if only for a moment in time. But perhaps most importantly, I noticed the trees. I mean really noticed them and how these towering life-providing beings survive in the harshest of living conditions. They are truly a magnificent things when you stop to think about all that they can survive in order to continue to live, and all of the life that they produce and support.
In my musings, I started thinking about how trees could be a nice metaphor for people who live with chronic and debilitating illnesses such as TBM. Trees adapt to their surroundings, no matter what that may be, in order to survive. They sway any which way the wind blows in order to stay standing. They even have to bend, sometimes to the most extreme angle possible, when these bullying winds try to master their towering figures in order to maintain the firm grasp where their roots were planted, All in all, except in the rarest of moments when Mother Nature's mastery cannot be contained and the trees bow and break to her will, these trees hold strong, steadfast, and eventually come to stand up straight, proud, and tall as they continue to grow and reach even further to the sky.
On any given day those of us who deal with a chronic illness deal with the harshest of conditions within our own bodies. We have to be willing to twist and turn and adapt to whatever it is that our constant companion has in store for us in the day, week, months, and years ahead. We sway any which way we have to. Sometimes we sway so much that our heads spin and it feels as though we may never regain a full grasp on our lives again; never be able to hold steadfast against those winds again. Oh, and bend. Bend, we do. There are times when we have to been to those same extreme angles that the anchors of nature have to in order to survive the strong winds roaring through. We sway and bend because we have to. And just like trees, only on the rarest of rare occasions, when the burdens of our illnesses become to much to bare, do we break.
It seems as though I'm not the only one intrigued by the magnificence of trees. A couple of weeks ago at church JJ Griffen, the overseer of our Campus Ministries, gave an amazing sermon on the relationship between trees and Christianity and that as Christians, we must learn to be more like trees. He posed the question of if we were thriving or simply surviving. This question easily translates to those of us with TBM or any other chronic illness. Am I thriving, not only in my faith but in my life with TBM, or am I simply surviving in this life that could not ever have been foreseen?
JJ mentioned there are trees made to survive under any condition that Mother Nature
devises. One tree he referenced was the Baobab tree that thrives in the harsh, often waterless, conditions of Africa. It's trunk is designed to hold water in order to keep it hydrated and thriving in the dry desert. He also mentioned that the Aspen tree thrives due to it's root system, which allows new sprouts to pop up along the shallow roots. This same root system allows these trees to hold each other tight so the tall, skinny trunks can sway and bend as the winds whip through them and still remain standing tall. Lastly, he spoke of the Oak tree. These are one of the strongest trees of all and are built to last. They grow massive round trunks to support the tremendous heights and limb spread that they are able to obtain with each passing year. These amazing trees can live upwards of a 100 years or more.
As he continued to preach his sermon I kept being drawn back to my musings of that fateful hike so many weeks before. I kept seeing the similarities of what he was saying and what I had observed with regards to trees, living as a Christian and living with a chronic, debilitating disease. So many similarities.
Like this baby pine tree covered by heavy wet snow, living with such diseases means you have to be able to survive in the harshest of conditions. You have to be able to quickly adapt and move forward, no matter what is being thrown at you and no matter how far off course your disease has taken you from the life you had planned for yourself. There will be days that you feel relatively normal, or as normal as you can, and then whammo, out of the blue, your disease raises it's ugly head and massively upsets that sweet normality you were relishing, leaving you shaken down to your very core; covered in your own version of heavy wet snow.
You never know when those harshest of conditions will happen, so you have to be prepared for whatever the day, or even the hour, may hand you. You have to make plans for those days whenever they may come to you. You can no longer live your life in the moment, blissfully unaware of what tomorrow may bring. You need to make concessions where you can and boost up those areas in which you still thrive. Cut back on those activities that cause your body and mind to be stressed or even distressed. For example, one of the most difficult parts of my day would be getting dressed. Of all the things that could be stressful for me, putting on lotion after a shower or pulling on my under garments and pants/skirts should not be a stressful part of my day! After all those are normal, even menial, everyday activities; ones that I often dreaded because I knew I would end up breathless and exhausted. After going through occupational therapy, I learned how to apply lotion and clothing in a manner that did not require me having to bend over so much, which compresses my diaphragm and lungs making it more difficult for me to breathe. Extremely simple "tricks," but what a world of difference they made in my morning routine. These tricks made it easier for me to breathe through getting dressed and, in a way, made it possible for me to begin thriving again, if even in the smallest of ways. It's definitely a win.
Without a doubt you have to be able to sway and bend. The strong winds of the disease you
own aim to take you down as swiftly as they can. (Yes we own our diseases - whether we want to own it or not, it's ours!) You must learn to sway in the direction these fierce winds push you. You have to let go of the past, of the life that you used to have or dreamt of having. You have to learn to make new plans and new dreams that will work within the confines that your disease has provided you. In order to thrive, you will have to sway in every direction imaginable. To quote the Power of Positivity, "You have a new story to write. And it looks nothing like your past." You may even swirl in seemingly endless circles as those winds swish and turn without any discernible direction as you learn to manage your disease and begin to thrive in your new life. Even if those winds swirl into a raging tornado, hang on tight and know that eventually things will calm down and that disease raging within in you won't win; you will not break. You were made to survive!
Another example is that for the longest time I became somewhat inflexible. Over the years as I sunk into becoming a bonafide workaholic, I became so routine oriented and scheduled that I found it difficult to function outside of my simple routine, yet complicated and jammed packed schedule. These schedules and routines allowed me the semblance of control. It was a quiet control that kept in and took over without me even realize how addicted to it I had become. During that time in my life I never would have called myself a workaholic or a control freak. I was just doing what I needed to do in my chosen profession and for the longest time I didn't even realize the number of hours I was putting in every week. I don't think any of my friends would ever associate me with being a control freak, due to the fact it was super stealthy in nature and lived just below the surface of my existence. Oh, but it was there, wielding a death grip on my life. On the rare days I had free, I would be at a loss as to what to do with myself. I never even realized this was how I had come to live my life. It just happened.
Becoming ill rocked my world. First there was the mold exposure, which wreaked complete and utter havoc within my body. This was the point where I first realized that I had absolutely no control over my life; it had all been a well-contrived illusion. The next lesson came when, after thinking I was finally getting back to my old life and staring to feel "normal" again, TBM reared it's ugly head and rocked my world yet again. God knew I needed a change in order to let go and let Him take the wheel of my life. Boy oh boy did he ever provide changes in such unexpected ways. I was at a loss as how to sway with the winds blowing through my life. I was completely devastated. The only way I managed to survive the dark days was to lay my soul open to God and trust that I was going to get through this and be all the better for it. I was bare naked and raw, feeling even the softest of breezes down to my bones as they rustled through my life.
Inevitably, there will be no more resting on your laurels, residing in your safe comfort zone. Once you were diagnosed with whatever illness you may have, your comfort zone disappeared. You will have to stretch and sway and sometimes move in seemingly endless circles just to find one thing that may help make your new life with a chronic illness just little easier. "Don't give up. Normally it is the last key on the ring which opens the door," is another of my favorite, and often so true, saying from the Power of Positivity. Believe me when I say that that one little thing, even if you've tried 100s of little things to find the one, may be something you never imagined ---- so far out of your comfort zone ---- give in to what you can, but don't bend so much you break.
For me, I've finally come to accept ownership of my mold exposure syndrome and TBM.
I am continually making adjustments in my life to accommodate the various goings on within my body at any given point. I've accepted that there are days when I just can't get out of the house, maybe not even bed, due to labored breathing, headaches, coughing, etc. I've accepted that I'm not as quick witted/thinking as I used to be. Nor do I have the energy to work 60 hours a week, which isn't necessarily a bad thing! I have, however, accepted that there are ways to work within the confines of my disease and am beginning to be successful at life again. I've learned that there are things I can do to help others deal with their diseases. I can help educate them on my experiences with TBM so that they have some idea of what to expect on their journey. (We all behave/react differently with our symptoms and reactions to treatments, so there's no one see fits all!) I can offer encouragement to the people who have other types of diseases as well. I have other things in mind to do as I become stronger and regain more energy. One day soon I will thrive again in these harsh conditions that life has thrown at me - and you will too!
Don't get me wrong, however, this does not mean that you must give up and not push those confines to their very limits. You must bend with those winds. Bending without breaking is the hardest aspect of learning to live, and thrive, with a chronic, debilitating disease. It is vital, though, that you learn to do just this. Simply being diagnosed with such a disease is enough to break some people. For others it's enough to bend them just to the breaking point, but they do not break; they immediately start looking for ways to simply survive at first, which ultimately leads them to be able to thrive in their new lives as they make the needed adjustments their disease demands.
Chronic illnesses often come with countless visits to the ER (Ugh - the worst!), to your doctor (or doctorS), various therapies, a counter full of prescription drugs (mine take up an entire kitchen drawer), and a house full of whatever medical devices are needed to help you with your disease. No matter what your disease is, you'll most likely have to bend your life to make allowances for these invasive things that are now so necessary to keep you going. You'll have to bend so much that eventually these things will just become an accepted, and even common place, aspect of your life.
My TBM has invaded every area of my life - even my home decor. Those of you who know me best, know that I am very particular about the decor of my home (professional hazard!). I put a lot of thought into making it reflect me and to making it into a warm, welcoming place where people feel comfortable. I now have a nebulizer and boxes of neb meds sitting beside my "spot" on the sofa, a large ugly blue oxygen concentrator in my beautiful pink (red in the winter) bedroom, and a box of heavy green oxygen tanks sitting in the corner of my living room - none of which match any of the decor in my home, but are necessary to keep me breathing these days. I even wear a face mask as needed when out and about in public - oh the looks I get when I do! :) I think I've mentioned this before, but people either bug out and try to get away from me as quickly as possible or they go out of their way to be nice/helpful to me. Either reaction makes me chuckle!
To some having to have the tools of my disease scattered about my home may not seem like such a thing that would require so much bending, and maybe they shouldn't have been, but to me they did. To me my home is my sanctuary from the world and these tools of my disease screamed at me every time I looked at them, interrupting the peace that my home had always provided. At first I tried to hide all of these items, to make them inconspicuous and unnoticeable - invisible to me and my visitors. I couldn't stand looking at them, to be reminded of my disease every time I glanced in their direction. Yet as I've accepted my MES & TBM, I now accept these tools that invaded my home and no longer even notice them. They're are just there. I've learned not to let such little things interfere with my happiness. I bended to my disease enough to live with these tools in my sanctuary and I lived to tell you about it! If I can bend in this area of my life, you can bend in ANY area of yours in order to get through those harsh winds.
I've always been intrigued by how trees can grow almost anywhere. They can spring up
through the tiniest of cracks in a boulder of granite. They can grow sideways on the side of a mountain (This picture is not a trick. This is actually the real steepness of the mountain side and these trees are growing tall and proud!). They can grow when their roots are fully exposed, spreading out on very top of the soil or jutting out from the side of a mountain. It doesn't seem to matter what the conditions are, trees find a way to not only grow, but to thrive. They are some of the toughest beings on the planet. They are strong and resilient. Just like al those trees from all over the world those of us who've been diagnosed with a chronic and debilitating disease are tough, strong, and resilient. We survive so that we can eventually begin to thrive again.
During JJ's sermon he gave us some tips for thriving in our faith. I thought most of those tips could just as easily translate to thriving inspire of our illnesses. I'll paraphrase some of them to fit our situations.
1. We must have strong roots.
The Aspen root system is strong and produces off shoots going in many directions. These off shoots allow more fingerling trees to spring up from the ground, forming an ever more strong root system and tree community that holds the trees firmly in their place no matter what Mother Nature throws at them. Our own root systems form the basis for our existence. The people we surround ourselves with, whether it be our family, friends, "chosen" family, co-workers, and even our medical teams, provide the support that we need to not only get through the rough patches of our diseases, but just to get through our everyday lives. They allow us to stand up straight and proud, keep us strong, help us grow; to survive the winds that blow through our lives.
I'm not one to ask for help very often. I'm such an independent person who was used to doing so much of my life alone, that asking for help was like admitting defeat, which for the record is utter nonsense! The people in our lives want to help us - if we let them. When they ask what they if they can help you, let them. When they ask what they can do for you, find something for them to do. I was relaying a story to some friends about how I've gone from being completely anal about keeping my house perfectly clean - no dust bunnies for me. Yet TBM has made it virtually impossible for me to maintain that standard of clean and I've had to accept that if I get the furniture dusted one day then that was enough. I could vacuum, which has proven to be a little bit of a difficult chore these days, on another day. Without hesitation, these wonderful ladies immediately offered to come clean my house, which was so not the point of the story. After some hesitation, well really it was resistance to the idea of needing help, on my part, I said yes. To my surprise they were sincerely excited that I agreed to let them help me. Your root system will also be delighted when you agree to allow them to help you. That's why we have such well-formed and binding root systems.
"So then, just as you received Christ Jesus as Lord, continue to live your lives in
him, rooted and built up in him" Colossians 2:6-7.
2. Delight in the law the Lord
Even if you're not someone who subscribes to Christianity, or any other religion for that matter, you can find some sound advice for living and loving one another from the law of my Heavenly Father.
"The law of the LORD is perfect, refreshing the soul. The statutes of the LORD are trustworthy, making wise the simple." Psalm 19:7
Most of us are well familiar with the 10 Commandments, but there are so many more laws of the Lord that are found all throughout the Bible. I will not go through all of them; just one that is most relevant here.
"Love your neighbor as yourself" Matthew 22:34-40.
This simple statement encompasses so many things to live by. First in order to effectively love your neighbor you must love yourself. If you're like me, you've experienced many times the you hated yourself and what your life had become because your body was betraying you and all that you had striven for during your lifetime. For me this feeling of hate were always fleeting, yet the fierceness of sincerely hating myself has had a lasting impaction how I see myself and feel about myself. I vowed never to let myself go back to that place of self hate and doubt. Nothing good can come out living in that deep, dark place.
Unfortunately, it's a place where most of us with a chronic illness visit at least once after diagnosis. Through many, many therapy sessions, I accepted that those dark places were inevitable and that it's actually OK to let myself experience them to the fullest. The key is to just not live there. Go through it so you can get through it. Come out on the other side stronger for it, then love yourself all the more for it.
Once you've allow yourself the great gift of loving yourself, then you can open up that love and grant the gift of you to others. (Deep thoughts by Shonna. You're welcome!) That is if you hated yourself, then how can you truly love any one else? You may think that you are loving others, and perhaps on the surface you do, but the hatred that you feel for yourself seeps into all areas of your life and taints them to the extent of falseness. Let go of the hate. You cannot change the disease and what it's doing to your life. Accept it and get back to loving yourself with all your heart. It's not until you do this that you can love others with a full heart and trueness that cannot be tainted or broken. It's a beautiful thing and you will be more fulfilled than you ever imagined.
3. Meditate on the day and night
At the end of a long day, no matter what life brought to your that day, take some time to reflect upon it. Think about all of the different people that touched your life that day and conversely, all of the people's lives you touched. You can never know how your presence impacted someone else. A simple smile and hello can turn sound someone else's day for the better.
Think through all the little wins you had. Think back on all the losses you had. How can you relish those wins, no matter how small or large they were? How can those wins become more a consistent and common part of your life. Hang on to the good feelings that accompanied them and feed off of those feelings when you are having a difficult time of it. Now for the losses. How can we make the losses wins? If you tried doing something that you used to do pre-diagnosis and find it too much to take on, then reconfigure your actions and thinking in order to make that activity more accommodating. If that means you're longer able to do long hikes up steep mountains, as used to be my main hobby and way of exercise, then find other smaller, less steep hikes to do in order to feed the need I have to get out in nature and explore the beauty that surrounds me here in Colorado.
Turn those losses into learning lessons and make the accommodations needed to make them a win. These accommodations may not be easy, because in most cases they are not desired by you, but once you bend to those winds that are disturbing your life, you will find things get much easier for you. You are actually winning when you thought you were losing. It's a difficult concept, yet super simple at the same time - if that make any sense at all. It's difficult because we don't want to give up our "normal" way of doing things or our "normal" way of life. It's simple because we must make changes in order to thrive in our new lives. Turn those losses into wins!
4. Remember what you have - Be grateful
Aww, sometime we become so all consumed by our illnesses that we forget all of the goodness that surrounds us. We are so much more than our diseases - don't lose sight of that! Cherish all the little things. Cherish your loved ones. Cherish the beauty of nature - the crisp blue sky, the puffy white clouds (We have amazing clouds here in CO!), bright colors of flowers, the green leaves of trees. Cherish the fact that you are loved.
There's so much to be grateful for in our amazing world. Be grateful for each breath you have taken and for those yet to come. Be grateful for the technology that lets you connect with new friends, or in my case life lines, who share your particular ailments. Be grateful for advancements in medical research, no matter how slow it may be, that will make living with your disease a little easier. Be grateful for a good night's sleep when they come (I have issues with restful sleep quite often . . . ). Be grateful for learning to love yourself so that you can love others fully. Be grateful for being able to wash your dishes or unload the dishwasher. Be grateful for a relaxing and revitalizing shower. Be grateful for a strong root system that holds you up and makes you stronger so that you can once again thrive. Be grateful for the life that you have been blessed with. Just be grateful and carry a grateful heart in all that you have and do.
In conclusion, as I think I've probably taken up too much of your time already, I just want to convey my heartfelt gratitude to my root system. There's no way I would ever have come this far if it had not been for the amazing people in my life who hold me up, guide me, and support me when I cannot support myself. These folks think they know how much I love and appreciate them, but there's no way I can ever truly express my gratitude and thankful heart fully to them. They have allowed me to sway and bend as much as I needed to, yet have kept me from completely breaking apart. I am humbled and blessed every day by them.
I hope some of you were able to take way just a little bit of helpfulness from this post. I pray for each and every one of you that you may come to love yourself, carry a grateful heart with you, know grace and mercy, and learn to sway and bend so that you can thrive. As always thank you for reading and for sharing in my health journey.
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