Last week TN Wife, this week MR

I feel like I can write so much more freely as mommy rhetoric than I can as anyone else. It is me. Most people who know me know I am mommy rhetoric, my students know as mommy rhetoric (said as retorerick) and my family knows me as such.

I am sure you have figured by now I am crazy busy with my own school, my job school and my three beautiful girls. All three who are doing amazing. Work is good. I am absolutely in love with the classes that I am teaching this year. Life is good.

But then there is my other life,  I am a TN wife. That means on a daily basis my conversations consist of TN. I watch my husband suffer from a disease that takes its toll on him, our family and our life. From the outsideimage looking in I suppose it looks normal and yes parts of our life are normal. That is because that is the life he chose to live.

It is a choice he makes every day to go on and live our lives as normally as possible. I am sure the people he works with see him as better and I am sure the people that see him being a dad think similarly. And I would too. By all accounts he looks and seems fine.

And I ask you not for sympathy for my family. Sympathy does us no good. I ask that you keep my family in your thoughts, your prayers and enjoy your families. A good friend told me when all of this started in my most desperate of times, “your family will grow stronger and closer” and that is a blessing. Initially, I was irritated because I was not looking for blessings. Instead back then I was seeking sympathy and someone to just say it all would be okay.

And it is. My family is closer and stronger in ways I can’t place words on. A fabric built so strong around our hearts that we will forever be bonded in this unique way. So yes there are blessings everywhere and I try and see them.

But I won’t lie. I am not a saint. I am angry. I am angry at how little the world knows about TN. I am angry that we went through all that we have gone through and yet I still wake up in the middle of the night petrified of tomorrow. I know more than anything that tomorrow is not promised. I am angry that more doctors are not working on TN. I can count on two hands doctors that treat it. I am angry it isn’t in our everyday vernacular like breast cancer or diabetes. I wonder would it all be different if it was?

I understand why though. I guess. Chronic pain illnesses are often not talked about. They are the cases that remain undisgnosed. They are ones who have to suffer in silence so we don’t have to acknowledge their pain every day. They are the ones that take countless mind numbing pills. They are the ones that take their own lives looking for relief and comfort. But when you look at it that way it changes you.

So no I don’t feel sorry for myself or want sympathy from anyone. I am just trying to enjoy today, praying for tomorrow and finding my way living as a TN wife. What is going on is long and complicated. It is hard to put into words and it is hard to put out there.

But what I can and will say is in the next two weeks please keep my family in your thoughts. But even more than that keep my husband in your thoughts. Do that by living your life with love and gracefulness.

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The storms are raging.

If you know me you know there is not much I don’t do. I try and do everything and usually I can. Maybe I don’t always do them to the best of my ability, but I do the best I can. Toward the end of this summer I found it would be required that I do graduate level work in communications in order to teach a particular class that I had lined up to teach. I was completely okay with it. I knew it would be hard to juggle with my PhD stuff out there. But I knew if anyone could it would be me. I also really wanted to take ownership over this course that I am teaching. Both programs started a few weeks apart. Both are on different campuses. I am a graduate student in Communications at my Alma Mater through Purdue University. But I am also a Comp/Rhet PhD student at Ball State, so there is a storm brewing here.

8302c834209e3f2e9e69862c8ba968b7Then you have my new life and I purposefully chose those words. My family is still in a deep recovery from TN. We are sorting out the quickness with which our lives were flipped. We are getting to know one another again. We are finding ourselves relying on one another more than anyone else. No one but the four other people I live in my house with understand TN and what it has done to our lives. It is only just in the last month or so that I have even begun to open up about a lot of it to anyone other than a few extremely close friends. My own daughters I am not even sure they are there yet. And my husband. My sweet, strong husband who has endured more than any human should ever have to. He is coping with who he is after this. My husband who was the most even keeled, kind, and quiet man is now faced with anxiety, anger and uncertainty that he is trying to figure out how to cope with. He is coping with the discrimination that comes with an invisible disease. Cruel and intolerable discrimination. We also are all coping with this idea that he won’t able to ever be who he was before last November. His surgery worked. His surgery didn’t make it all go away. He lives and functions by daily meds. Meds that cause horrible side effects and issues. And we are on this roller coaster of new meds, side effects and meds to help with side effects. It feels never ending sometimes. But more than anything it leaves him exhausted and irritable. But not the kind of exhausted and irritable after a hard day at work that all of us experience at one time or another. Instead it is an exhausted and irritable that is hard to even explain. We are assured he will get to a good place. It just takes time. But his headaches last for days. We constantly have to watch out for triggers for his TN which are noise, stress, fatigue and anxiety. All things that happen regularly in life.  So there is a storm brewing here.

This year I have a 7th grader, a 5th grader (both middle school) and a kindergartner. That in itself is a storm of homework, piano lessons, softball and dance. Oh and braces, dental appointments and doctor appointments. And just being the kind of parents we have always been. Especially on days when we are tired and angry. Or we are ready to just go to bed at 4.

And finally my job. My job which is so demanding (that has no negative connotation here). I work well over 40 hours a week. I love my job and with every single bit of my soul I place all I have left here. So there is a storm brewing here.

So everywhere I look there are storms. I want to do it all, but in doing it all I am losing something. My family. My girls. My sanity.

I had to look at my life and see what I could release that would let me breathe a bit. I just needed to catch my breath and I was drowning.

It was my PhD. Now before you feel sad on my giving this up. Don’t. I didn’t give it up. I went to my program chair and asked what kinds of options I had. I plead and begged for mercy. I didn’t even know what I was asking for, but I knew I needed it and I knew this is where I needed it. The decision went before a a graduate program chair and committee and it was sent back that I could defer my program for a semester and they offered me another if needed. I was given until January, but also until August 2015 if needed to try and deal with life. To search for normalcy.

I am not so naive to believe that this search for this elusive thing that doesn’t exist will be found. Normal is what we make it. For me right now my normal is 63389b66f058a0b9801131a8f2bed4d2emotional chaos. But it is fully managed. I know once the physical manifestation of my heart (my husband) is better, I will be better. And I am sure many will jump on me for saying pursuing my PhD is selfish, but it is. It is for me right now in this moment. I am not doing it to advance a career. I will likely not receive compensation for the advanced degree because my chosen field doesn’t practice such a thing. My hope is that my position between high school teacher and college instructor will eventually advance the thinking on this particular topic. But I gotta do it and I know I will. But right now I am a wife first. I am a mother first. I am a teacher first. All I know is that I will do it. I don’t know how and I feel insecure and lost without a direct plan. But I won’t let it go. I can’t. I won’t let TN win that way.

Plus I know I am a fighter. I always have been. I wouldn’t have made it where I today without fighting the whole darn way. I will continue to fight and fight. And when I can’t win and the storm takes over I will use a darn tarp.

It sucks. Storms suck. But I know they make us who we are and I know more than anything I would not be surviving this storm without the storms I had before this. Love will win this battle too. Love for self, love for the love of my life, love for my career and love for my dreams. Love always wins. It all feels so impossible, but in the end it always wins. And maybe some of this me convincing you  is actually me convincing myself. I am not sure. I just know it has got to get better. But I get confused because we are better.

“To move forth and grab your destiny is admirable. To shape your own future with the strength in your fist is beyond that.”
S.A. Bouraleh