And I will try, to fix you…

I know most, if not all of us, have been in situations where we wish we could just make everything fine again. At some point in our lives, we have hoped that there was something we could do to change the circumstances instead of sitting idly by watching someone you love go through things you have no control over. I think, in many ways that it is equally, if not worse, to be the caretaker of someone whose situation you are powerless to change and incapable of fixing than it is to be the person going through it.

It leaves you beyond frustrated, doubting the system, distrustful of the world, and leaves you with many questions for which there is no answer. I am so used to being the patient and the one who needs to be taken care of and comforted, and now I am finally seeing the other side a little bit. My grandfather has had Parkinson’s disease for about 20 years and he is getting worse. I know there is no way I can rid him of the disease, and in all honesty, it is hard for me to even be around it. It is difficult to be near my mom in some ways when she is feeling down about her parents. My grandmother, who is 82 years old and was given a month to live about 30 years ago, is the sole caretaker of her husband. She does it all.  My grandmother (aka Gran) helps  him when he can’t move the covers when he is in bed, helps him in the bathroom, helps him shower and get dressed, helps him walk, is in charge of making sure he is eating well, and everything else I don’t see on a day to day basis because I don’t live with them. It leaves me feeling helpless because there is nothing I can do to take their pain away. And it pains me to see it, and even hear about it.

These feelings are what I know both of my parents have felt for the last 12 years and continue to feel each day. I never really understood or even had enough space in my brain to deal with anything else so it was just easier, if not necessary, to only focus on me and my emotions and physical symptoms. So many things have just spiraled out of control in my life and because they all happened so fast, I feel like I never had a break. I was never able to be there for my parents or brother when they were going through whatever they were dealing with. I was always the one who needed my parents to be my rock so I wouldn’t fall apart. I remember the first time I ever saw my dad cry in front of me. I was in the hospital with both of my parents in my room and my dad just broke down and was hugging me so tightly. My mom kept tapping him and shaking her head as if to say “don’t do that in front of her.” That was the first time I think I realized my parents were just human beings who had no more power over the situation I was in than I did. I lost faith in God about four years after I was diagnosed, so I looked at my parents as if they were a “higher power.” My parents’ promises were something I clung to. I would always ask and still do “Am I going to be okay?” I desperately needed the comfort of the two people I looked at as more powerful than God to tell me and assure me that everything would be alright and that the way I was feeling and how I was living would not be forever.

Human beings need to believe in something that is greater than them. We all need to believe that someone or something out there is watching over us and the people we love and care about. That is what religion brings to people’s lives. Religion is not something that I have in my life and although I don’t think that I will one day wake up and be able to relinquish some control to God, I am trying to believe in more spiritual things. Or, I guess, I am trying to create my own higher powers. I believe the people and pets I have lost are like angels watching over my family and I. When I pray, I now pray to my chocolate lab Kassie and the person I mentioned in the post who passed away from complications due to hepatitis C. Whenever I would read something someone would write or post on a support group site, or even just in general, and it would say something like “Thank God I got sick because I wouldn’t be the person I am today” or “I know God will never give me anything I cannot handle” or really just anything that showed me that that person was a person of enormous faith, I would just roll my eyes. I would think of them as imbeciles because they believed so strongly in something I couldn’t understand. And even though I won’t pretend to understand it now, I can appreciate the meaning and the need for it. I wish I was like that. I now wish I was like those people that I used to roll my eyes at when reading or listening to them speak. I wish I had such a deep devotion to God, or something that would allow me to have some peace knowing that I would be taken care of by someone who was not only stronger and more powerful than me, but also someone greater and larger than my parents.

One of the most difficult things in life is to watch as someone you love go through a devastating illness or is trapped in a situation where all you can do is be there to listen, comfort, and try your best to make things easier and show your love and support for that person. I never realized how truly difficult it was to watch someone go through unrelenting hell when there is nothing you can do to take his/her pain away. My dad has said to me so many times, “I wish it was me. I would trade with you in a second.” Whenever I would get angry or upset or frustrated at my situation and never ending battle to be healthy and live a normal life, I would just keep thinking how thankful I was that it was happening to me. I am a superstitious person so I don’t want to say too much and potentially “jinx” someone but I think you get what I am trying to say.

I have friends in my life who are suffering, family members who are going through difficult times, and I feel so powerless. It is an awful feeling that I don’t think anyone can truly understand unless they have been through it themselves. I won’t even pretend to fathom what my parents have been going through all of these years watching their daughter go through so much. I can only imagine… but hopefully, will never actually know through personal experience.

Crohns disease and ulcerative colitis are diseases that unfortunately require us to be far more dependent on others than we would normally have been had we not gotten sick. This is accompanied by an enormous amount of guilt and feeling like a constant burden. It makes my parents angry when I constantly talk about feeling like I am the “disappointing child” because I do know deep down that they do not feel like that. Yet, I still say it and I still feel it within me.

It is easy to get caught up in ourselves and our lives and issues, but let us always remember that our illness and the situations we are in affect our loved ones just as much, if not more, than they do us. Whether we want to think about it or even believe it, that is an undeniable fact. It is something that is very difficult for me to talk about because as helpless as I feel to help my grandfather, or my friends, I am my parents’ daughter and watching your child go through such turmoil when there is nothing you can do but call doctors, pick up medications, and sit in a hospital room hoping for some magic answer to make it all go away, is probably one of the worst things a parent can go through. I hope this helps to bring awareness to those people, like myself, who are so focused on their own living nightmare, that they forget or don’t acknowledge the people in their lives who are always there with their love and support.


Thank you mom & dad for always being by my side even though it was heartbreaking for you to watch me go through all that I/we have. No one and no family is as strong as we are…team Troy always and forever <3

  • Jodi

    that is exactly how you feel when you love someone. I never realized it either. but do know how much I appreciated people wanting to do that for me. Sometimes “just being there” is enough.Even though it never feels like it. I always felt that way with you. I knew there was nothing I could say or do that would make you feel better and I felt like just another person being “cliche” with -hang in there marisa, and other such comments. Thankfully, it is so different now. Mostly, because YOU are different. I know I can’t “fix” anything for you, but I know just being here and listening helps. And again, it makes me feel closer to you.
    You say so many things that resonate with me. After my dad died I was like f–k god. It took me an incredibly long time to even have any kind of faith. I am one of those people you mention that didn’t realize how great their life was and how thankful they were for everything, until I found out I had MS.
    it can definitely sound queer, and sometimes I even roll my eyes at myself, but it’s true. My life got better and more meaningful with my diagnosis.
    I am sorry to hear about your grandfather. Sweet, nice man. I have always really like the both of them very much. Please send my love.
    You are blessed to have fabulous, strong parents who believe in you and are always there for you.
    That’s what family is all about. You are lucky to have that incredible bond with them.
    Team Troy is a powerful force (in all its iterations…)
    love you Marisa.