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Home > Blogs > Caring for Spouses > The Man in the Bubble and Other Fables

The Man in the Bubble and Other Fables

CatThere is a lot going through my mind even if there is not a lot going on right now. As I sit up, night after night, I think about the last 11 months, back to when all this first started. We are almost being brought full circle to September 11th, the day this horrible nightmare began for us. Remembering all of the times we were told, “Oh, he should be fine in a few months.” Then remembering all the times after nothing started to change, “We really can’t say how long he will be like this but we have high hopes.”

High hopes. False expectations, I say.

I recently joked that I think he should be placed in a plastic bubble, like John Travolta was… After all, if John Travolta can make it work, anyone can. But I was serious. Everything and anything as simple as breathing is difficult for him right now.

True, he isn’t worse and that is good. Better the same than worse but the same is not progress. The same is a stale-mated existence that I am tired (as I am sure he is) of living.

It hurts me, deeply, to hear him talk about all the things he wants to do now that we’ve finally moved to California like we always wanted to. None of it he can do. He can barely walk around the block or through a grocery store without getting winded or tired.

He’s an outdoorsman to his heart, so when being outside still brings him searing and painful headaches, it hurts to be the one to tell him, we have to go back inside. And even though inside, he is without physical pain, I know he suffers much emotional and spiritual pain.

Our conversation the other day about pain surprised me because I told him, I think you handle pain much better than I do. He asked what kind of pain did I mean? I told him, the physical kind. He said, “Oh, the physical kind is easy to deal with. I can usually take a pill. The physical pain won’t kill you. It’s the emotional kind that will.”

I said nothing to that. I couldn’t. I know him. His response to me asking why he would say that or what he meant by that is the same response I always get when it comes to asking him about his ‘feelings’ and that is, “Nothing.”

I don’t typically wear my heart on my sleeve. I am a vicious little woman with goals and a self-worth beyond reproach. As Ani DiFranco says in her song, “Outta Me, Onto You”, I wear mine underneath my right pant leg, strapped to my boot. I care very little what others truly think of me. But I care very much of what I can give to others to show them that I care for them. You don’t have to like me; you just need to understand my heart.

With Marc, I now have my heart permanently tattooed on my forehead.

Everything that goes wrong for him, or for me that directly affects him, tears me apart.

There are so many things I know that are breaking him down inside and I know he won’t ever really tell me what they are so I will have no real way of knowing how to fix them for him or at least place a Band-Aid upon them so that he feels some relief. So, all I can do is be there for him until he’s ready to let me know what he needs.

In the meantime, my efforts of waiting to help heal him are causing destruction to my inner self.

And as I become less whole, I become less capable of being able to help him when he finally does admit that he needs it. I need to find a way to heal my inner soul before it tears me down on the outside, as well, and I am no use to anyone, not even myself.

About Casandra

Avatar of Casandra
Hi! My name is Casandra Porter. I am the wife of, Marc, whom I care for. He suffers from a potential fatal infection that has spread to his brain. Something that is extremely rare. He is a patient of both Mayo Clinic AZ and Stanford University and has many other doctors on consult worldwide. We are a young-ish couple, in our early 30s. Marc is an avid video gamer and the resident comic relief. I am an amateur writer but my main focus is on working with independent artists and writers helping them gain following through social media outlets. I run several blogs. My current project with Marc is a blog called, Running With Sharp ObjectsIt is a blog dedicated to our marital conversations about the most wacky and hilarious topics, mostly pertaining to pop culture. It's a way to keep humor in our lives and bring a little bit to others. We are also setting up a Facebook page for this site where we share inspirational stories, quotes, etc. But, you can always find me right here on Caregiving.com blogging about my life as a Caregiver.

2 comments

  1. Avatar of Denise

    Casandra–Oh, my gosh, this post! Your description of your broken heart–and the difficulty in healing it–is stunning.

    And, you are so right about time–who can wait? As you say, to be your best, the healing needs to begin now.

    I wish I knew the cure for the breaks in your heart. I wish I knew the direction to take to get you to the peace you so deserve. I guess, in some regard, this is a community of broken hearts. I hope knowing you can share the pain here will help provide some salve.

  2. Avatar of Pegi

    Sweet Casandra, it is all so much. I recently went though very much the same experience. That year marker seems to be a bit of a plague. You go over the year in review and you’re no where near where you anticipated being. It’s hard not to think about it. As far as Marc’s not wanting to talk about emotions, I have the same kind of husband. Which makes it even more alarming when they do make comments like “emotional pain”, and end the conversation. I have no advice, just an understanding ear. I wish I had advice for you. I also have gone from being a strong, independent woman, to getting lost in this whole process. It’s so difficult to separate yourself from your circumstances. I look in the mirror trying to find me. That’s the only thing I can try and offer advice on, in spite of the back falls, the heartbreaks I am determined to hang onto what is left of me. To reclaim the parts of myself that are good, and even fun; I started doing some drawing again. It’s not much but it was a big part of me. Now I think if I can get more of me back maybe I can help my husband get more of him back. On good days, it’s working. We go out, we go to the beach for lunch or to the store. At least something that we did when life was good. Please be gentle on yourself. You’ve been through and are going through so much. Wishing you peace.

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