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Finding Power When Your Disease Makes You Feel Powerless

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Sitting here in gut-wrenching pain, fighting for every prescription and ounce of help, it’s a wonder I have any sense of power or control left in my life. Slowly losing the ability to take care of yourself, eat, drink or use the bathroom can really make a person feel powerless. I’m alive not on my own steam, but because of medical innovation. Catheters keep my bladder empty. Central lines and artificial nutrition through my veins keeps me nourished and hydrated. Assistance from others keeps me clean and taken care of. Wheelchairs and walking aids get me out of the house and further than a distance of a couple hundred yards.

I’m not looking for sympathy and I am sure as hell not ungrateful for my resources, but how do I keep a can-do attitude when there is so much I can’t do that I once could? How do I encourage others in similar or worse positions than myself? How do I find power in such a powerless situation? Power to keep going. Power to get stronger. Power to get out of bed every day and smile. Power to fight.

Quite often I am confronted by others asking me how I do it, or they simply state most people wouldn’t be as positive and upbeat if they had gone through all that I have had to. But the truth is, you really never know how strong you are until you have to be, and I had to be. You see body builders and athletes working out at the gym all the time building up their physical strength. Maybe it’s for a competition or an athletic event and they’re a part of a team. Maybe it’s just to stay healthy. There are infinite ways to build up our physical strength, but what about our mental strength?

Life prepares us for that. I believe God guides us down the path we are on for a reason and would never give us something we couldn’t handle. Cliché, I know, but thus far I’ve handled it and that was not on my own. Knowing that and knowing this disease can’t take away my mentality gives me power. Every thought I have gives me power because I am in control of it. Losing the functions I have lost is power the disease has. Every moment, every situation I allow to suck because I’m reminded of my disease – which, let’s be honest, happens constantly – I lose power and it gains power. So how do I take that away? How do I break the cycle and steal some power back? By changing the situation.

I’m going to be blunt. No 23-year-old female, or anyone for that matter, wants help showering, and being that exposed can feel humiliating. This can be a truly powerless feeling. Thankfully I have a great aide and care team who encourages me to do as much as I can on my own, but that’s beside the point. To take over a situation like that, I crack a joke. One thing to remember – humor is always powerful and goes a long way. I do whatever I can to make the moment better. Whatever you can do to make the moment better will give you more power.

I remind myself what I can do. Maybe I cannot eat or drink, maybe I have to carry a backpack full of medical supplies anytime I go out and meticulously plan that trip out, but I can still set small goals every day for myself to accomplish. Think of anytime you achieved something. I bet you felt pretty powerful in that moment. Big or small, it doesn’t matter, as long as it’s attainable. So I challenge myself to reach out to a friend I haven’t talked to in a while. Chronic illness can cause isolation and doing this helps take away that power from illness and give it back to me and my social life. Finding your own areas of power-saving is key. A major power-saver for me is seeing the good in every moment of every day and focusing on what I can do versus what I cannot do. I cannot work currently, but I can work on my writing – which I love. I can put on a favorite movie or read a new book. I can play a game with my family that surrounds me. For everything I cannot do, there are a thousand things I can do. That helps keep power over my feelings in every moment.

This disease wants to take away the good from me (come on, who doesn’t love food?!), but there’s other good in the moment to focus on. For one, I save a lot of money on groceries (see, there’s that humor again), and it’s a beautiful day out. The sun is shining and I’m sitting out on the deck enjoying it as I am writing this. I may not have power over the weather, but my disease doesn’t either, and I have the power to choose to enjoy the weather when I can. As I write this I have an amazing, supportive, loving family who has seen me through this. That’s something this disease can never take away. Also untouchable is my medical team all in home, in town and out of town. I have the power of resources to fight this disease that it could never have. That alone is good that is in every moment. I have the power to choose to smile. The power to choose to laugh. The power to not be just my disease, but a human, a sister, a daughter, a cousin and a friend as well. I have the power to close my eyes and relive the memories of when I could run and participate in
sports. I also have the power to dream and believe that one day I will be able to complete my bucket list item of running across America, coast to coast, New York to California. There may be a moment at a cookout surrounded by all my old favorite foods that gets to me, but I have the power of knowing it’s still a good moment as I’m making memories with loved ones while they’re still here to make memories with.

At the end of the day it won’t matter what I did or didn’t eat but the memories made will, and that’s a power my disease will never have. I have not been perfect all these years, but every day I’m making small changes and mindful choices to gain back more and more power.

Originally published: June 5, 2018
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