Lifting his hand, he gently touched my face. “It’s all right, sweetheart – most of the time, I don’t understand this damn disease either, and I’m the one who has it.”
“Is it going to…is it fatal?” I whispered, a tear sliding down my cheek the moment I asked the one question I didn’t really want to know the answer to.
“In some cases, yes. In others, no. Sometimes, it ends up taking away your quality of life so you’d wish it was fatal, but with the right care and treatment, most people with MS have a very normal lifespan without even needing a wheelchair.”
“And what about you? What’s going to happen to you, Tyler?”
“I don’t know, sweetheart. No one really knows. But it’s progressing, and they’re trying new drugs on me to try and stop it, but my relapses are all over the place, and I’m losing sensation.”
“Relapses? Losing sensation?” He was speaking English, but it could have been another language, as I didn’t know what it all meant.
“My prognosis has been upgraded to Progressive Remitting at the moment. There isn’t just one type of MS. It’s one of those diseases that has many variations and no two cases are ever really the same. Basically, it’s a problem with my immune system. For some reason, when I was fifteen, it decided to attack my nervous system. They don’t know what causes it, and they don’t know how to cure it. Some people are progressive from the very beginning. But most MS cases are relapsing remitting MS – which is what I had.”
“So it’s changing – getting worse?” I asked, my eyes wide as I paid avid attention to the details he was giving me. I needed to know everything.
“Yes. At first, I’d have a relapse, which is when my symptoms would get worse. It’s kind of like when you’re drunk and you can’t quite control your body, except your mind works fine, but every movement is really laborious – like walking through wet concrete sometimes. And it would take a while, but I’d go back to normal and for the first couple of years, I relapsed maybe once or twice a year. But then, I had the mother of all relapses at the end of year twelve.”
“Was that was happened at the River?” I asked, remembering what Erica had told me about him not being able to move, and he nodded.
“Yeah. It was intense. I mean, I knew the relapse was coming, because I was struggling. But, I’d always been able to move through them before – maybe I’d take a week or two off school, but I’d still be able to function. I remember on that day, mum wanted me to stay home, but it was the end of high school, and I wanted to go. Everyone was drinking so even though my speech was kind of slow and my balance wasn’t great, they just thought I’d been drinking too, and I was having fun – everything was fine. But then I couldn’t get up, and when the guys tried to help me, I fell back down and this…this tightening crept its way up my body and…” he shook his head, his eyes out of focus as if he was reliving the memory. “And I couldn’t move. It was like my body seized up and everyone started yelling. They thought maybe I’d taken drugs or something. Eventually, paramedics got there, and they airlifted me to the closest hospital and eventually they got my muscles to relax, but I still didn’t have much control over them. It all happened so fast and no one could explain why or how. So they moved me to Prince Alfred so the big MS experts could have a look at me. For a while, even they thought I was going to be stuck like that – barely able to speak or move…it was awful, and my mum was a wreck because she didn’t know what was going on, and my dad was being an arse as usual and didn’t want to know what was happening. It was a nightmare, but after almost a month, I started to recover, and with a stack of physiotherapy, I became somewhat normal again.”
My heart sat in my throat as I listened to him describing what had happened to him, and I hoped he wouldn’t stop there – there was obviously so much more to his tale.
“But it happened again?” I prompted when he leaned forward and began to massage the palm of his hand.
“Yeah. It happened again. And it keeps happening. And each time, it gets closer together, and harder to recover from. I try to do everything right. I try every treatment they offer me, and I’m as fit, and as healthy as I can be, but they just keep coming, and they keep doing more damage and…” He stopped talking, his brow furrowed as he let out a charged breath and wiped a tired hand over his face, holding it there for a minute as he stared forward. “I can’t see properly out of my left eye anymore. My sense of touch is…faint. My legs ache – all. the. time. and…they don’t know what’s happening besides the fact that it’s getting worse – quickly.”
“How fast? What are they saying to you?”
He rocked a little in place, his beautiful face scrunching up as I watched his mind war with voicing his prognosis. I could tell it wasn’t good and I wrapped my arms around his shoulders. “I’m here,” I promised. “I’ll be here.”
“Maybe a year – maybe months – no one knows how fast this is going to happen, they just know that eventually, I’ll be a fucking vegetable.” He looked at me, his eyes wide and brimming with tears. “I don’t want to be like that forever,” he whispered, his voice barely audible as the tears fell from his eyes. “I can’t live like that, sweetheart.”
“Oh, Tyler,” I whispered, my own tears falling as I wrapped my arms around his body and held him to me as tight as I could.
“I don’t want–” His body shook as he turned to me, his arms encircling me entirely as he clung to me, crying over and over again that he didn’t want to lose control of his body.
And I cried with him, crying for the man I was in love with. Crying for everything he was set to lose, still finding it so hard to reconcile the knowledge that the strong arms around me, and the man attached to them had such a frightening illness. I wanted to help him, I wanted to do something and tell him that it would all be OK. But, there was nothing I could say, nothing I could do but hold him and cry with him, hoping to God that the prognosis was wrong. It had to be wrong. Tyler wasn’t the kind of guy this stuff happened to. Tyler was the golden boy. Tyler was strong. Tyler was supposed be the kind of guy who took over the world.
“This doesn’t change a thing, Tyler,” I whispered into his neck, pressing my lips against his skin. “I love you. This doesn’t change a thing.”
23
I COULDN’T sleep. Tyler had passed out, exhausted emotionally and from his treatment, and for a long time, I just lay there looking at him, taking in every fine detail of his skin, every tiny line from his many smiles and the soft crease on his brow from the struggles he was hiding from the world – from me.
My heart felt as though it was crying, my entire body numb from shock. In my mind, there was a voice of denial running on a loop, saying they were wrong, he was wrong. Tyler was too strong be anything but the man he was. They were all wrong.
After a while, I slipped from his warm bed and took my phone out into the living area. Sitting on the couch, I was still fully dressed in my work uniform. I tucked my legs beneath me and swiped my phone open and tapped the search bar. Then I devoured as much information as possible on MS.
There were pages and pages of research notes, explanations, and personal experiences. Some of it was downright scary. The words ‘incurable’ and ‘degenerative’ kept jumping out at me. There were videos meant to give hope, showing people who were living and healthy with the disease – the people who tried a new treatment and had great results, the people who used alternative therapies to stay well, or those who stayed well just with diet and exercise alone. Then there were the people who had lost their ability to walk, and their videos, while meant to inspire, saddened me because you could see in their eyes that they knew things would only get worse.
Then there were videos of people wanting to show the ugly side of the disease, and they were the scariest of all. It showed them stuck in a chair, howling in pain and unable to move without the help of their twenty-four-seven carer. I tortured myself watching those videos. I tortured myself reading through study after study, realising experts ba
rely understood the complexities of the disease, and so far, all the treatments they had in place were about managing symptoms and pain. They didn’t know how to stop it, and there was not one treatment that could slow it down. There were too many variables, and it seemed to me like they were just stabbing in the dark.
“This is why I didn’t want you to know.” Tyler’s voice startled me. I’d been so absorbed in my information gathering that I hadn’t heard him approach, and he was standing behind me, watching the video I had playing quietly on my screen. “I didn’t want you looking at me and feeling sorry that that was in my future. I just wanted to be normal for as long as I could.” Shutting the video off, I wiped at my damp cheeks. “Turn it back on, Sarah. You need to understand why I left you – why you should have stayed away.”
“I don’t want to stay away from you, Tyler. I love you too much.”
“I know, sweetheart, and I feel like an arse for pushing my way into your life the way I did. I told myself I was just trying to help you because it was my fault you were hurt. But in truth, I just wanted to know the beautiful girl with the curly hair who always scowled when she looked at me. I wanted to be the one who made her smile.”
“I did not scowl,” I said with a sniffle, smiling slightly because I knew it was probably true. “Come and sit with me.” I reached my hand out to him as he moved around the couch and lowered himself beside me. Then I turned, and slid my legs across his lap like a seatbelt, wanting to be close to him and look at him while we spoke. I took his large hand in mine, and placed my palm against his.
“I wanted you to like me, and I knew I was being selfish, but I couldn’t stop wanting to be around you. I couldn’t stop being the reason you smiled. Even when I relapsed that first time, I knew I should have just called it quits then. But, the first thing I did when I could walk properly again was go to you. There was this voice in my head telling me to stay away because I was only going to ruin you. But I didn’t listen. I didn’t want to.”
“You could have told me in the beginning, Tyler. I would have understood. And I would have helped you during your relapse, just like you helped me with my ankle. We could have spent all this time together – the good, and the bad. But now, we have all these wasted moments while you kept secrets and tried to push me away. You should have told me and let me choose for myself.”
“I was trying to protect you from what you saw in the video.” He turned his eyes to meet mine.
“At the expense of missing out on every moment in between.” I released a sigh then reached up to run my fingers through his hair. “I love you, Tyler. I love your mind. No matter what the future holds for your body, and even if this does happen to you, I’m still going to love you, and I’ll still want to be with you – because that’s love. And I don’t want to waste time fighting with you to let me in. I don’t want to waste time waiting and hoping that you’ll come back when you shut me out. I just want to be with you and only you no matter what the future holds.”
He reached over and tapped the blank screen on my mobile phone. “What you saw right there is what the future holds, Sarah. I will be crippled. I will be completely dependant on someone else for everything. Do you understand that?”
“Yes. I understand that. I understand it all, and I’m not going to lie, it scares the crap out of me. But, do you know what scares me more?”
His eyes responded by meeting mine from beneath his furrowed brow, watching me as I shifted my weight and moved so I was straddling his lap and facing him, my fingertips sliding over the skin of his face as I looked deep into his eyes.
“The thought of losing another day with you. That scares me more than anything in this world. I love you, Tyler. I love you now, and I’ll love you tomorrow, and the day after that. And to be honest, I think I’ve always loved you. I only ever scowled at you because I had the hots for you, and you didn’t seem to notice me.”
His mouth curved into a lazy grin, and I leaned down and kissed his smile. “I noticed you,” he whispered, his hands reaching up to slide into my hair. “I always noticed you, sweetheart.” Then he looked into my eyes for a moment, studying my expression before he brought his mouth to mine and kissed me deeply in a way that filled my body with desire and longing, setting all of my nerve endings on fire as I pressed my body into his.
“I missed you,” I whisper against his mouth, feeling his erection pressing up between my legs.
“I missed you too. Constantly,” he said, as his hands moved down to my waist and lifted my shirt up over my head before he wrapped his arms around my waist and shifted his position, lowering me onto couch so he could hold himself above me. Then he looked down at me, pain in his blue eyes as I saw the doubt skimming around the edges of the intense connection that flowed between us.
“I want you, Tyler. Always,” I told him, reaching down to pull his shirt up so my hands could touch the bare skin of his torso. “Always.”
He sat back and lifted his shirt over his head, dropping it on the floor with mine and I reached out to run my hands over the familiar ridges of his chest and abs on my way toward his pants. I wanted him naked, and I wanted him inside me. It had been so long and my body screamed for that connection, my mind needing it to feel at one with him again.
I pushed them down his body, freeing his erection before undoing my own pants and wriggling out of them. He moved back, helping to pull my pants and underwear down my legs before he settled back on top of me, my legs opened around him, ready to take his length as he slid himself slowly inside of me.
His breath shuddered as he sunk to my depths and held himself there. There was so much emotion in his pause, as if he felt as though he was doing something wrong, even though it was what he wanted. I needed to make him understand that it was what I wanted to.
“Kiss me, Tyler. Kiss me while you make love to me. But love me, I want you to love me.”
He met my eyes, his own shining as he looked down and slowly moved his hips back and forth. Then I reached up, pulling his mouth to mine, pressing my lips to his and kissing him with all the love I had inside me. Slowly, his thrusts became rhythmic, and I could feel him letting go of his doubts. I could feel the moment he allowed himself to make love to me. I could feel the reverence in his touch, and the tenderness in his kiss. I could feel his hunger and his need, and as we continued to move together, the heat of our joined bodies turned into a tight coil, and I called out his name, my body shuddered beneath his as he pulsed inside me, and I swear I heard his soft words, pleading against my neck, “Don’t ever leave me.”
24
WE SLEPT in late the next morning. I called in sick to work and spent the day with him, needing to be around him, needing him to understand how important he is to me. I wanted him to know that he is it from me – my one true love. There was no doubt in my mind that I was going to fight for this man. I was going to fight for every happy moment, and I was going to hold on through all the bad, and I was going to do it all with him, one moment at a time.
From what I had gathered from my research last night, even though Tyler was likely to eventually lose the ability to do things for himself, he would still live, and assuming he didn’t develop any complications, he could live for a very long time – and you never knew when a new treatment, or even a cure could come about. So as far as I could see, we just needed to have hope and take everything as it came to us. And as long as we did that together, I thought I could probably handle anything.
“Do you remember when you first started dragging me around with you and forcing me to have fun?” I asked, as I lay beside him on the bed, the sheets twisted around our naked bodies, tangled together.
He began to laugh. “I forced you to have fun? God, what a nightmare,” he joked.
I rolled over onto my stomach, pushing myself up on my elbows so I could look at him. “Obviously, I loved every moment of it, but I do have a point that I’m trying to make here.”
“And what’s that?”
“I asked you wh
at you are doing with me, and you replied that you were just living in the moment, trying to have fun without looking too far ahead into the future.”
“I remember.”
“I understand why you were trying to push me away. I understand that you are just trying to protect me. But I want you to promise that you’ll never do that again. You’ll never push me away or shut me out to try and protect me. I want to go through this with you day by day, Moment by moment. But, I also want forever with you, Tyler – I want to be your forever.”
Reaching up, he ran the backs of his fingers along my jaw line. “Even though my forever includes a wheelchair, and the inability to even shit or piss by myself? I mean, I might not even be able to chew my own food, sweetheart – is that really the kind of forever you want?”
“If I were to suddenly get sick or be involved in an accident that left me incapacitated, would it change the way you feel about me?”
His brow creased as he considered my words then he shook his head. “It wouldn’t change a thing,” he said resolutely.
“Exactly. Fact is, Tyler, we don’t know precisely what the future holds. An asteroid could smash through the ozone tomorrow and blow us all to bits. We could step off the sidewalk and get hit by a bus. Aliens could come and turn us all into hosts for their alien babies – the zombie apocalypse could happen.”
“Now you’re just getting ridiculous,” he laughed, his chest bouncing in amusement.
“Maybe. But, the point is still the same – we don’t know what’s going to happen in the next ten minutes, let alone tomorrow, next month, or next year. We can plan our lives, we can sit here waiting for shit to happen, or we can just get on board and enjoy the ride.”
“At least until it isn’t fun anymore,” he agreed.
47 Things Page 13