I have some important things to clarify with you and even to apologize for. You have cooperated with my soul through everything from jumping out of planes, riding on motorcycles, dancing in competitions, kayaking in oceans and lakes, running through rainstorms, lifting weights and more. You were an active, fit body. Then, we got sick.
For the past 18 months, you have gone through hell. You have fought hard. You have been under attack and still try your best to function. You kept me going as long as you could while I continued to work as a nurse and care for critically ill patients. You had to adjust to getting formula for nourishment, pumped directly into your small intestine. You had to fight through small fiber neuropathy and still try to help me put one foot in front of the other.
I have pumped you full of chemicals and then gotten mad when you presented with a few negative side effects. I have been so frustrated with you when you don’t have the energy to get me out of bed. But I realize now, that you are busy waging a war deep inside you– a war that no one can see or even identify.
I get upset with you when my abdomen swells, as if I am pregnant. I curse your name when my legs give out at the end of the day and I have to use my walker to get to the bathroom. I tell you that you have become stupid when I can’t remember a recent conversation or a story I was about to tell or even what I was trying to do. As I take a step back, I remember what you’re going through. Your stomach is paralyzed. When I can no longer block out my hunger, I fill you with food that has no place to go and no way to break down. So, of course you swell up and cause pain! You have foot drop and severe nerve damage in your legs. So, surely you can’t walk around all the time. You have experienced a significant cognitive decline and lost a large number of IQ points. That is not your fault. The disease you are up against has won many battles, but you continue to fight the war.
When I look at you, I see scars. Your neck and chest have big scars. That is because last June, they put a port under your skin. The surgeon made a mistake and had to cut you open two more times to put a central line in through your neck and down into your heart. Your abdomen has six incisions in various places from three laprascopic surgeries. Two of those surgeries took place before this illness even began because you have been dealing with endometriosis since you were old enough to have a period. You have a big scar that looks like a second belly button. That is the scar you should be most proud of. I know I have learned to be proud of it too. That scar is a reminder of the G-J feeding tube you sported for 8 months. That site bled and caused me a great deal of pain for almost the entire time you had it. When the complications got bad enough, I pulled that tube out of you myself. I cared for and protected the open hole that remained for several weeks.
Summer approached, and it was time to try on bathing suits. Your hips were huge. I couldn’t even stand to look at them. Many of my clothes didn’t fit right because of them. Once again, I finally stopped to think about what you had endured to get us here. For four months, in the winter and early spring, my doctors injected you with a medication called Lupron. They wanted to keep the endometriosis under control since there were plenty of problems already plaguing your abdominal cavity. That medication induced menopause to prevent the uterine tissue from growing. We went through menopause at the mere age of 23. I cried when the nightmares and hot flashes woke me up at night. It wasn’t your fault. You were struggling and I brought all of that upon you. After the injections stopped, the menopause was slowly reversed. The side effects diminished, but you had gained weight on your hips. I continued to be disgusted by the weight gain considering I couldn’t even eat anything! The gastrointestinal doctors assumed my nutritional status was under control because you weren’t losing weight. As the hormone reversal continued to take place, some of the weight was lost and we realized I really was not getting enough nutrition. The hormones covered up the outer image and fooled the scale, but really you were starving inside.
They put you back on TPN so you would receive nourishment through your venous system. I know how hard that is for your heart, liver and kidneys to process. The doctors check your blood counts and liver panel every week, but we all know that at any point, you may become too tired. Your liver may start to give up the fight and slack off on the enormous task it has been forced to accomplish. I understand. I am prepared for that possibility and for that day, whenever it may come.
You have gone above and beyond. You have been dealt more problems than most bodies ever have to face in an entire lifetime. But you are doing it all at once. You have been under attack for over a year and a half. You have also never stopped fighting for me or with me. I am working together with you now. We are united.
I want you to know how sorry I am for blaming you, cursing you, and hating you. You are beautiful. Now, when I look at you in the mirror, I see a warrior. I see battle scars that physically represent what you have overcome. Your hips are trophies for going through menopause nearly 30 years earlier than any other woman; Not to mention, it was chemically induced and much more rapid than the natural version. I am in this with you, you are not alone. I see what you have done for me. I see you. You have maintained the integrity of many of my looks, to the point that a lot of people think I don’t even look sick. That is pretty impressive considering what is going on beneath your surface. You deserve a hell of a lot more credit than I have given you. I have come to terms with the fact that you may not be able to fight this forever. The time you have given me so far is such a gift. I promise not to take it for granted. I know you can tell that part is true because I am still dragging you out on modified adventures. I am making the most of this time while you fight. When you grow tired though, I will be ready.
I could not do this without you. I am grateful that you are helping me through this tragically beautiful journey. The next time I put on my bathing suit, I will rock the hell out of it. I will display you proudly. I love you, body, and I want to be your friend.
The Heart and Soul You Have Fought to Protect
2 thoughts on “A Letter To My Body During My Chronic Illness”
These always make me cry 😦 You’ve been through too much! You’re amazing and so beautiful… so yes… you better rock the hell outta that bathing suit!!! Even if it involves me getting you to the beach or waterpark one of these times 🙂 take care, love ya 😘
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Hahhaha oh my gosh, you’re the best! We absolutely should rock our scarred bellies together sometime! I can’t stop thinking about you and your recovery– hope you’re not in too much pain. Love you too, Julie!! xox