Michelle Victoria Venegas

First i want to say that this is in no way about blaming anyone or putting her faults (in our relationship or personal) out there. Those are hers and not for me to say. This is about me letting it out and maybe helping others struggling feel not alone...or as an example of what not to do. It's about healing and simply working through this process.

From the moment we met we had an instant connection and spark that there was no stopping. Was I hesitant and scared...fuck yes. She was the first girl I ever felt my heart skip for. I've always loved love and diving into things that scare me because I love feeling alive and I always want to live life to the fullest and with no regrets. So I jumped...and we began our story.

We were connected at the hip. Saw each other whenever we could. It was a little tricky in the beginning because her parents were against her being gay and I wasn't allowed at her house. That didn't stop me from sneaking over late at night or spending the night when they were gone because YOU CAN'T STOP LOVE PEOPLE! Sorry not sorry! She was allowed at my house even though my mom had trouble accepting it. We just respected not being all over each other in front of her as she and my dad got use to it and they did. They may not have understood it but never would they try and stop me from loving who I wanted or tell me I'm going to hell for the decision I was making. They knew it was my life and my mom understood that because she went through something similar with her parents and my dad. She always said she was the one going to bed with him not them. They ended up loving him too so there you go. Some people just need time and are open. ..some aren't. So Michelle and I adjusted and went with the flow and overcame that obstacle. It was only her house that was the problem and it wasn't a big deal because the rest of her family welcomed me with open arms and all of my family welcomed her. I met her parents 3 years later and we were cordial and it took a little time before they were comfortable around me but at that point it was their problem not ours. It was me and her against the world.

While we dated we got hotel rooms...like a lot. Pretty sure hotels are still around because of us! Haha

11 months into our relationship I was diagnosed and I thought for sure that was it for us but like the beautiful angel she is she stayed and it was me and her against this obstacle.

On our year anniversary she proposed to me on top of a mountain in the snow in the middle of the desert. I couldn't believe it and my mind was running a million miles a minute and I was happy and scared and I loved this woman so much standing in front of me I said yes. We talked after that and decided that we would wait to tell my parents because we were scared of them freaking out and not allowing her over which would make our relationship harder. It was still pretty new to them and in the darkness of being diagnosed I wanted this bright spot just for us for a while...me and her. While talking one day she said that she wanted me to experience everything so that is why she proposed so fast. My stomach dropped and I felt crushed...so because I was dying she proposed?! I didn't want to know the answer so I pushed it down and behind the wall and would deal with it later. I should've asked and talked about it. I know now after we broke up that it came out wrong and not what she meant. After hearing that though I thought about it and thought well if that's why she proposed then why should we...and my thoughts got darker and went to I don't want to make her a widow. I know that she probably had a vision of what our wedding would be like... I did. It didn't include me being sick and not being able to enjoy it fully but instead of letting go of that vision and going with the flow and talking to her about it...I got angry that I was sick and we wouldn't have a normal wedding. So I pushed it down for later. I would focus on trips and showing her new things and enjoying life with her. She moved in not long after. We did just as I planned and everytime I progressed a little bit it broke my spirit a little bit more and made me angrier and more frustrated but I shoved it down.

I've never been the affectionate or romantic type but for her I wanted to be. She really never asked for much and I wanted to give her everything she wanted and more. She made me want to be better and she was changing me but had no idea. If I hadn't held it all in and communicated I know we would be married blissfully enjoying life together.

I remember the night that really broke me and thinking back it's when I started really struggling In my head and giving up on myself and really leaning hard on Michelle. We were in mammoth camping with my family and it was fucking freezing that night. Apparently for ALS patients extreme heat or cold weather can make it worse and I was about to find that out. I had to pee in the middle of the night so we walked to the bathroom and as I go to wipe myself after, I realize my hand and arm aren't reaching and cramping up. Fuck. I need help. I ask Michelle to help me as I'm freaking out in my head about how weird this is gonna be but she does this for a living and it will be ok. She's seen me naked and we've been intimate for so long it's ok. Don't freak out jess. She wipes me and I'm immediately overwhelmed with embarrassment...sadness..anger..frustration and an immense more amount of love for her. I break down and cry and she holds me and tells me it's ok she has me and I can't even talk because i'm trying to pull myself together in my head. I'm trying not to cry loud because I don't want to wake everyone or have to tell everyone what just happened. All I want to do is scream but somehow I push it down and kiss her to thank her because if I try to talk about it I'll lose it. We're tired and it's freezing and those feelings can wait.

Now at this point I don't realize that with burying everything I'm feeling and not facing it and I'm burying a little bit of my love for her too because I'm not letting it out or her in. After that I slowly started giving up and letting her take over and didn't even notice. She was doing everything for me and working and training for jujitsu. I even stopped talking as much or being affectionate or texting. I often thought how beautiful she is and how lucky I felt but never said it. I would think oh I'll show her tonight;) but often life and my mind would get in the way. There were so many times that I wanted to grab her and kiss her or hold her hand but I didn't because I had this picture in my head of how it would happen or look and I knew it wouldn't look like that and it would make me angry and frustrated and embarrassed. I can't tell you how many times i've felt embarrassed for her having me as a fiance...a sick dying girl. She didn't care though..she loved me and chose me. I let those thoughts drown me and it would hold me back from being everything she needed. My giving up on myself made it harder for us and I would get frustrated and annoyed. She often thought I was annoyed at her or mad at her but it was never about her. I was drowning and didn't say anything bcuz I already felt like a burden ...but talking and letting it out and go would have made it better. She tried not taking everything personal but how do you not? I turned into a needy high maintenance girl who was a tad controlling too. I have never been that girl and I would catch myself and try not to be but eventually I would get pulled back under. I couldn't control what was happening with my body so I tried to control everything else but most of the time I didn't notice I was doing it.  Now I wasn't some angry monster running around yelling. Most days no one could tell I was mad. In my head I was screaming and cursing at the top of my lungs. It was internal and I was just quiet and stuck in my head.  I had a hard time being present. I had good days where I was able to pull myself out from my head and feel like myself for a little but it was getting harder to hold everything in...be strong..be present and be a good fiance. 

Michelle and I started fighting about the dumbest things. I depended on her and leaned on her and not in a healthy way. I didn't want to ask anyone else to help because I was so embarrassed and asking for help felt weak to me but we needed it. We did a good job at keeping our problems to ourselves because we never wanted to be that crazy couple. We weren't ever a bad couple. We had alot in common and loved the shit out of each other but it was getting buried and we needed help but tried doing it alone. We never disrespected each other or were unfaithful. She built a wall like i... to deal with everything and with it went her romantic feelings for me and our spark. I could feel the distance and how unhappy she was...we both were. Towards the end I was letting my wall down and trying to deal with everything but I never opened up about it and her wall wasn't budging. Had I not pressed her to talk to me about how she felt we would still be together but still unhappy. I had to let her go. I thought I was done too and wasn't in love anymore. 

After she left it took a couple days for the anger and frustration to start to lift and with it all my love for her came rushing back. Fuck. I let her leave. I let my sexy funny smart sweetheart fiance go. I begged for her to come back but she stayed strong and I'm thankful she did. I started to think about everything and see how much I put on her and us. Her leaving forced me to ask for help and utilize everyone on my support team and of course they were more than happy to. I don't know what I was so embarrassed and scared about. I have nothing to be embarrassed about and it's not my fault. I've never been easily embarrassed if ever so what the fuck jess get your shit together! Not having her here made me realize how much I gave up trying and fighting. I can still do so much and be so much to someone. All I want now is to be her wife and love the shit out of her and us as individuals and as a couple to come first and my disease to take a back seat because for too long it's been the other way around. I want to fight for us..for her for me. I want to be her rock and biggest cheerleader.  Not that I wasn't already but I could be better at it. I also know in order to do all of this I need to let everything else out and go. I need to let everyone in as well and continue asking everyone for help. I told her this and that I'll be here when she is ready. She said she doesn't know if she'll be able to do it or let me in again. She stopped looking at me like her fiance and just saw me as a dying patient. Which I get. We both understand each other's pain. It's no ones fault we didn't know how to handle everything or communicate with everything going on. I'm sure she is scared too and not everyone can jump into things that scare them. We both lost ourselves and got burnt out. We were such strong confident outgoing women and we let it weigh us down. I know we could be better than ever knowing everything we know now and how much we care and love each other but she has to come to that realization on her own. She may never though. She may find little things to justify the wall or not wanting to try again. We may never find our way back or be friends or talk. She wants time and space and I know we both need it as much as it sucks. All I can do is focus on me and finding myself again. So our journey together ends. 

So now that it's all coming out I'm facing my future and disease, I get to add heartbreak like I've never felt on top of it....this is gonna hurt like a motherfucker....go big or go home I guess......