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It's a small world after all,
It's a small world after all,
It's a small world after all,
it's a small, small, world.
Not only is it small, it is STA-RANGE. The Land of POTS is the type of place people try to avoid, or at the very least leave as soon as humanly possible. It has zero charm and offers more than its fair share of unpredictability, especially when the sun beats down mercilessly during the long, hot, summer months. That is when you will find most POTSTONIANS shriveled up in despair, wondering how much longer they can hold on without losing their everloving minds.
If you ever meet a genuine POTSTONIAN in person, there are a few things you should know:
- None of us chose to live in the Land of POTS. Its almost like we were exiled for some unknown crime.
- Most of us never even knew it existed. It is not on your typical "map of the world."
- We are not happy to be stuck in The Land of POTS with no idea if we will ever get to leave.
- We have been forced to learn a new language with big words like Dysautonomia.
- We do not like the benefits offered, and the medical care is especially lacking. Worse, most doctors speak an entirely different language.
- We are bored with drinking a gallon of water every single day, and pray to God it does not contain lead. We're looking at you Michigan.
- We are tired of being forced to ride the merry-go-round all day, every day. Being dizzy is no longer amusing....
- We are exhausted by the variety of migraines we endure. My personal "favorite" is the ocular migraine with its weird kaleidoscope vision, which could also be a TIA. I feel like the carnival master is yelling, "Step right up and spin the wheel to learn your fate! Is it a migraine or is it a stroke? What will it be today lady?"
- We are tired of our hearts racing as if we're running a marathon when we are NOT MOVING AT ALL.
- We would LOVE it if our extremities would quit swelling already and return to their normal size. Elephant feet and Pillsbury Dough hands are not attractive.
- We would prefer NOT to pass out due to heat, exercise, standing or sitting up for too long.
- We are tired, and also, we are tired of being tired ALL.OF.THE.DANG.TIME.
Personally, I have been unimpressed with my new, small world. It is certainly not the "happily ever after" I was hoping to find. Everyone's vision of "happily ever after" is different, but a key component of mine is travel. For many years I dreamed big and followed my traveling dreams by exploring many different countries. Sometimes I traveled with friends and sometimes I had only my backpack and journal to keep me company. The places I visited and the experiences I had are great memories that bring much joy now that I am stuck in the Land of POTS. I am grateful to have experienced so much of this BIG, beautiful world before I was exiled. My world view expanded and shifted, and I grew in confidence and grace as I explored this amazing creation. My faith deepened as saw I God's creativity through a variety of cultures that make humanity so rich. I learned to love our differences.
It was an amazing time for me, but as my health failed and hampered my footloose-and-fancy-free lifestyle, I began to lose heart. Almost literally because my heart was working triple time to keep up with the defect that was silently killing me. Thankfully it was repaired by way of a true miracle and I had a few weeks of feeling like a normal person. And then - EXILE! My world suddenly shrunk. Sometimes I feel like I live in a minimum security prison, although I am sure that is far from the truth. Yet, freedom and choices have been ripped away or limited, and worse, instead of dreaming big, I now dream much smaller dreams like standing up without passing out or simply leaving my house. I dream of living without constant palpitations and a racing heart. I dream of living a single day without an ocular migraine. I dream of dainty hands and feet (okay, that will NEVER happen because I am built like my father, but still!) And I dream of imbibing caffeine again. Sigh.
Some days are better than others, although almost all mornings are difficult. This past week has been rough. Last Sunday was particularly difficult as I was singing with the worship team. Unbeknownst to anyone (I hope) was the fact that I was very close to passing out. The hot Texas sun streaming through the windows, combined with the struggling air conditioner was a bit much for my body to take. The dizziness returned with a vengeance. I started seeing kaleidoscopes and grew lightheaded, while my heart decided to run a marathon. Boomboomboomboomboomboomboom, boomboomboom, BOOMBOOM, BOOOOOOOM,..............boom.boom. My feet were swelling out of my shoes and I was sweating profusely. I really wanted to just lie down where I was and take a long nap. But I also wanted to worship and push through my own temporary discomfort. I did not want POTS to win. By God's grace I survived without an embarrassing fall, but I still left discouraged.
POTS is a big annoyance, and although not as serious as heart failure or pulmonary hypertension, there is no cure, which leaves very little room for hope. As my doctor so "kindly" put it, "Well, it won't kill you." (You can rest assured that he was still in one piece when I left his office....) He then went on to say that there is nothing that will really help. Diet doesn't make it go away. Neither does weight loss or exercise. Those things are important, but there is no cure, and there are equal numbers of skinny, fit people who also suffer in silence. My choices are to get enough sleep, never drink caffeine, never drink alcohol, wear compression garments (in this heat??), use ONLY the recumbent bike to exercise, and whatever I do, NEVER, EVER get overheated. Except I live in South Texas, so there's that......
As any citizen of the Land of POTS will tell you, trying to live happily ever after when nothing works right and is not fixable is daunting. Learning to fight for ourselves when the doctors wash their hands of us is a rough road. Trying to be kind when people tell us what they are SURE will work, as if we had not already tried it, or thought about it, or researched it to death. Attempting to educate people who will never understand how difficult it is to live dizzy and swollen with kaleidoscope vision, as you run a daily marathon. All while knowing it could be worse, which actually serves to make us feel guilty. For me personally, I end up feeling like a whiner because I actually HAVE survived far worse. It feels silly to be felled by something that "won't kill me".
If you have read anything I have written, you know that I do not sugar-coat things. I do not have ten Bible verses in my pocket that will make everything better if you just memorize them. I have not found five easy steps to living your best life. I DO unabashedly call it like I see it and the truth is: we were not promised "happily ever after" in this life. We are promised trials and tribulations, but we tend to overlook those verses in the Bible. Everyone, even a lot of Christians, think if they just had "x,y,z" then their lives would be perfect and they could live out their fairy-tale dreams. It feels true in the longing for it, but it is a lie. The initial rush that comes from getting what you always wanted eventually gives way to the mundane. The varnish always wears off and what remains is REALITY. Fairy tales always end happily, but real life doesn't always end that way this side of heaven. Real life gives way to the truth of the gospel because there is nothing quite like living in a fallen world to reveal our need for redemption. Maybe the "happily ever after" we all seek is really found in eternity with our Creator.
I have experienced the worst parts of a fairy tale. Flood, fire, abuse, American-style poverty, neurosurgery, heart surgery, autoimmune disease, POTS, caring for two ailing parents, and probably more to come. No Prince Charming has rescued me, kissed me awake, or pursued me with a glass slipper in hand. But, I have a Savior who has never let me go; who has pursued me into the darkest nights of the soul; who has showered me with love, and rescued me from a burning building. I have experienced the depth of love that my Savior lavishes on me. New mercy each morning. Grace that covers my multitude of sins. Comfort that only God can bring to my soul. Peace that cannot be explained in human terms. Joy that is found in the strength of the Lord. A rich faith that comes from sharing in the sufferings of Christ. And lately, rest that only comes in casting my burdens on Him.
My circumstances have not and may never change. There will be days when I am not okay with that, but mostly I have learned to let go of control and let God work his will for me. Do I wish I did not have to deal with C-PTSD? ABSOLUTELY. Do I want to spend time recovering from more suffering? NO. Do I want to have to survive one more terrible event? NOPE. I do not wish for those things, and, in fact, pray like Jesus did for the cup to be taken from me. But if it is not God's plan for me, then I know I can live joyfully through the pain because I have the Trinity on my side. Jesus is my joy when my story is messy. He is my hope when the doctors fall short. He is my peace when life is topsy-turvy. He is the reason I am still kicking. No matter how you suffer, remember that you can find joy in the journey, even if it doesn't look like you thought it would.
