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He turned away from me, and let go of my hand. I watched him walk away from my porch and into his car, without even sparing a second glance at the woman who he’d promised his life to. I kept staring for a moment, too stunned to even cry out. I just felt, weak. Like all the strength had left my body. Of course, that wasn’t exactly a new feeling, and I didn’t know if it was from the pain in my heart or my disease. The disease that forced me to lie here like a human shell on the couch instead of run after my love. The same disease that forced my husband away from me.
It was about three years ago when I was diagnosed. Carter and I had just begun our life together as husband and wife. We were so happy; it was just like playing house. He’d go to work, I’d cook and clean the house, he’d come home, and we’d spend the night together. I was giddy and in love more than anybody could even think. Carter was to, and he showed it with the little gifts he bought me, and he’d ask me about my day, hug me when I was in a bad mood. It was just so, perfect. I should’ve known that it wouldn’t last; the universe doesn’t like people to be happy.
One day, as I was sweeping the floor, I felt my arm muscles abruptly give out. The broom dropped the floor with a loud smack, and my head rapidly began spinning. I felt as though I was inside of a tornado. Everything was flying, and I had no control of my body. I struggled to my bed and threw myself on top of it. I couldn’t even find the strength to lift the sheets over my body, or grab the phone. I couldn’t move for what seemed like hours, until my husband got home. I thought for sure I was going to die. When Carter got home, he was my superhero, he picked me up and drove me to the E.R. I was wheeled around this way and that, only half aware of what was going on. Then everything went grey, and I was out.
I awoke later. Don’t ask me when, because at that point I had lost all track of time. Carter wasn’t there, so I panicked. I tried to get up, only to realize that I still couldn’t move my arms, and I could barely even feel my legs. But they still moved, so I kicked them with all I had. I screamed as loud as I could, but I know outside of my body it was probably only a frail whisper. A doctor came into my room and felt my head and my pulse. He assured me I was fine. I demanded to know where my husband was, and he said that he was right here. That soothed me a bit, but I was still scared. I wanted to know what was happening to me, as anybody would.
“Don’t worry, Miss, you’re just suffering from a little exhaustion. Just rest here a while, and you’ll be better in no time.”
As he was saying this, he was pouring something into a baggy attached to my arm through a needle. He kept soothing me, and my eyes started to glaze over. My eyelids all at once began to weigh a thousand pounds, and the last thing I saw was the love of my life coming into the room and holding my hand. I fell asleep with a smile.
The days after that got easier. The strength slowly returned to my limbs, and the headaches subsided. 5 days later, when they released me, I felt just as normal. Carter and I celebrated my return to normalcy with a trip to a high-end restaurant, and I came home sporting a new ruby bracelet. Weeks passed, and after a while my episode became nothing more than a disturbing memory.
However, on my birthday of all days, about two months later, the same thing happened. Only worse. I woke up that morning, happy as can be, only until I realized I couldn’t move my arms or legs. My husband and I did the exact same thing as we did last time, taking me to the hospital and such. This time my husband, being such a stand up man as he was, told the doctor that he demanded to have answers. What I was going through was not just exhaustion. There was something wrong with me, but of course the doctor couldn’t possibly have been wrong. The doctor is always right, and the doctor said to go home and rest. What can you do?
This time I didn’t get better right away. I was confined to my bed for almost a week, I couldn’t do anything, I had my meals fed to me and was led to the bathroom by my mother. I was a small child, completely dependent.
I was so grateful to my husband, he took such good care of me. I was his little doll, who he fed and talked to. Sometimes he’d stay for hours and just lay with me, and tell me how I was going to get better and we were going to be together forever. Everything a girl wants to hear. He made my static state seem not as bad. I suppose that as my partner, he felt he had to. Inside of my indebted heart, though, was a little bit of sorrow, both for myself and Carter. He was sacrificing so much, just to be with me. I could see from my bed that things were piling up. He seemed unshaven, more cluttered. Instead of an omelet and French toast in the morning, he was drinking coffee almost every day. His shirts seemed more and more wrinkled. I could tell the stress was wearing on him, and I couldn’t do anything about it. Everything was slipping away from me. From us.
I tried my hardest to get myself in working order again. Everyday I would do exercises, even from my bed, just trying to lift my arms over my head, and leave them there. I’d try and stand up, only fall with a defeated thump onto my mattress. I’d move my fingers, one at a time, to try and regain my motor control. Every second that I was awake (which wasn’t often, considering I was on serious medication for my head pain), I tried. I tried for me, and I tried for Carter. He was always there encouraging me, he was great.
Even after I was able to get out of bed, a significant part of me was slowly draining away. My formerly active lifestyle dwindled into struggles to do mundane tasks. I went from early morning jogs to getting winded coming down the stairs, from cooking and cleaning to popping every kind of pill under the sun. Every time I looked in the mirror, and saw the dark circles under my eyes, I was disgusted with myself. I was doing something wrong. I was being punished for something, I knew it.
One night, after a totally exhausting day, I was laying in bed and suddenly began sobbing. The sobbing turned into hysterics. Poor Carter, he had no idea what to do. I just sat there with tears running rivers down my face, onto the sheets and into my mouth. I was crying so hard, almost no sound came out. The noise inside my brain couldn’t be understood to even myself, so I didn’t even know why I was crying. I just, was. I don’t know when I finally fell asleep, but thank God I did, because I would’ve probably ripped my vocal chords to shreds if I had continued on like that much longer.
The following morning, neither Carter or I mentioned my episode that night. We just went on with our lives, our lives that were growing harder day by day. Our money was dwindling, because of the medical bills and that Carter was skipping work to spend more time with me. It was ironic, because one of the many reasons I married Carter was for the financial security.
A couple days later, when we had gotten our bills for the month, I told Carter he had to go back to work, that I would be fine. I thought I was strong enough to handle this on my own. I had never thought how lonely it would be. Before my illness struck, when Carter was at work, I’d be able to occupy myself, so it never seemed too long until he was back in my arms again. Now, laying in bed, the emptiness of the home suddenly felt magnified. Being there, alone with a book or the television, it was horrible. When Carter came home, I cried in his arms for a while, begged him never to leave me again. I understand that this put him between a rock and a hard place, but at that point, I didn’t care. I just needed him to hold me.
Weeks went by like this, and Carter was still going to work, leaving me in the house. My mother couldn’t stay forever taking care of me like she had in the early weeks of my illness, and she had flown back home a long time ago. There was no improving with my condition, I was only getting weaker and weaker. I went to the doctor the umpteenth time in the past 6 months, and I found out I tipped the scales at 102 pounds. After seeing that, and taking some blood tests, the doctor finally referred me to somewhere else. That’s where I should finally learn what was wrong with me.
Sitting in a patient room, with a hospital gown so big on me I was swimming in it, I acted as a human pincushion. This test, and that test, and the other test were given to me. Needles went in my arm, my leg, my head, my mouth, and places where a needle should never go. Then, there was the waiting. A week has never gone by so slowly. During that week, a shocking new symptom showed up. I was beginning to lose my sight. With that revelation, I was more determined to find out what was wrong with me. I needed myself back.
Finally, we went back to the hospital to get my test results. I had Muscular Dystrophy. At first, we were stunned. Then came the questions. What is it? What’s the prognosis? Why wasn’t this diagnosed sooner? Can it be cured? It turns out that MD is an inherited disease that slowly eats away at your muscles, and patients who have MD eventually lose their ability to walk. I stopped listening after this point, because I knew what was coming next. I was going to have this forever. I couldn’t drink a potion and fix it, as I was hoping. I would have to deal with this.
My dear husband carried me out of the hospital room and laid me in the car. We didn’t leave for almost an hour, we just sat there, and he rubbed my back. He knew there was nothing he could say, so he didn’t. Then we began the long drive back home.
I’d like to say that I didn’t give up fighting, that I battled this disease with everything I could. But I would be lying. I accepted it. Carter was the one fighting it. He was up late on the computer searching up different cures, different ideas. He wouldn’t accept that his wife was dying. I helped him as much as I could, I really did. But with my sight leaving me and my strength leaving me day by day, eventually sitting up on the bed was a triumph.
There were small victories, like some days I was able to come downstairs and get myself something to eat. With Carter’s help, I could even go outside. But with every step forward, I went two steps back. The disease was crushing down on us. It was in control of both of our lives.
One night, lying in bed, I told my husband that I wanted to write a will. I don’t know why, but that made him so angry. He stood up, heated, and paced back and forth. He accused me of giving up. He accused me of not giving anything, of not fighting. He said I was being selfish. I said nothing, because I couldn’t argue with him. He was right. I had given up. I didn’t meet his eye as he went on, and finally he stopped yelling. That was the first night Carter slept in the guest room. My heart was as heavy as my limbs felt that night.
That morning, Carter apologized. But I knew something had broken. As he went to work and kissed me goodbye, I looked into his eyes and didn’t know who I saw. I was afraid that the stress of my illness had started breaking our relationship in half. I thought that we were so in love, that nothing could dent us. I guess I was wrong.
He stayed at work late that night, and then the next night. I missed him just as much, but I didn’t know if he missed me. Was he right? Was I being selfish? A married couple is supposed to love each other in sickness and in health. What did that mean? Did it mean that when one was sick, the other had to support them? Or did it mean that no matter if they were sick or healthy they had to support each other? A wave of guilt suddenly washed over me. I realized that I’d been neglecting Carter to a point that was nearly shameful. It had been nearly a year since my symptoms first started appearing, and with my 20/20 hindsight, I could see that I’d been pushing him away, and going further and further inside myself.
I wasn’t perfect. I wasn’t superman, because as much as I want to I cannot sacrifice every single bit of my needs to try and make Carter happy. But who says I needed to do that? He didn’t tell me that. I was putting it on myself. Why would I push someone I loved away when I needed him most? I love Carter, really and truly, so maybe it is out of fear that he will not be able to take care of me and my needs right now. Maybe I don’t trust him enough to help me through this, so I’m preventing him from even trying. Does that mean I’m taking advantage of him? I don’t know the proper protocol for being a terminally ill spouse!
With this new revelation, I was determined to try and be better for Carter. I practiced in the mirror putting on the biggest smile I possibly could, and thought about what I could say to him to make him feel better. I couldn’t physically go and cook him a nice dinner, but maybe I could order out?
“Hi baby, how was your day?” Those words sounded so foreign in my mouth. I said them again to myself. When was the last time I’ve said them? I grabbed the phone slowly, careful not to hurt myself, and ordered Italian. I walked downstairs, which took quite a while, and sat on the couch, waiting for the bell to ring. When it finally did, I took special care laying it out, nice and pretty. It wasn’t my best, I could certainly do better. But I’m trying. I smiled genuinely for the first time in almost a year, and thought that he was going to be so happy when he finally came home. I was high on the excitement. The clock ticked. I checked my watch, and Carter was supposed to be home a while ago. I grew worried, but stayed sitting at the dining room table. With every passing minute, my heart sank. Soon, it was past midnight. I realized that Carter wasn’t coming home that night. Suddenly, the sadness plus the soreness combined on me, and I had another episode. I fell asleep on the dining room floor.
I was lucky that a neighbor came to check on me. She carried me back upstairs and put me in my bed. She cleaned up the food, and I told her not to worry about it, and not to tell Carter. I didn’t need him worrying about me or feeling guilty.
Carter did finally come home around 8 a.m. He said that when he left work, he was so tired he couldn’t drive, so he got a hotel room. I smiled and said it was perfectly fine. He didn’t lay in bed with me that day though, he was in his study on the computer. I lied in bed, thinking about how I could possibly fix this. I was pushing him away, even when I didn’t want to! It felt hopeless. That confession to myself sent me spiraling down again into my own self-pity. Why should I even care what he thinks, or how to take care of him? He should be taking care of me! I simmered in my room until I got tired and fell asleep. Carter slept on the couch again that night.
Even more weeks passed, and then months. Carter stayed out later and later, and later still. He was developing shady excuses for where he was. I was powerless, both in my mind and body, to do anything. It seemed like we were in an emotional tug-of-war. When I wanted him to take care of me, I pushed him away, but then when I try to go out of my way to take care of him, he walks all over me. It’s a power struggle, and we both lose no matter who wins.
As my birthday rolled around again, I was almost legally blind, and I had completely lost my ability to walk. I had a scooter to get around, because I couldn’t even use a wheelchair. It was horrible. You expect to see a 95 year old grandmother on one of these, not a 25 year old woman. I couldn’t even go to the bathroom by myself. I was fading away. My days all blended together, each about pills and sleeping. Carter hardly even registered with me anymore, and I doubt I registered with him. I had morphed into his pet. He bought me food, medicine, and clothing. It was a sick relationship that we had twisted into, a shadow of what it once was. My soul was fading away, and it seemed that Carter didn’t even care. At the times I was aware, Carter would kiss me on the forehead, give me food and medicine, and tell me to go back to sleep. I don’t know what he did with his time. For all I knew he had a new girlfriend. A new life. It’s not like I was able to provide him anything anymore. I held nothing for him. But even in my weakest moments, my heart still reached out for him. I loved him so much, I wanted him to start over, and be happy. I wanted him to cut and run, as harsh as it may seem. He didn’t deserve a wife who wasn’t even as much anymore.
I suppose that’s what brings me here, laying on this couch. My house is empty, and my husband is gone. I’m trapped in a body that has betrayed me, and life has swallowed me whole. I didn’t win this round, but maybe in my next life I’ll be something better. Maybe I’ll be a better person, or live a full life. I’m not bitter, as I’ve said since the beginning, I’ve accepted it. I knew this was going to happen. Why prolong the inevitable? I think I’m just going to close my eyes…