I can’t focus today. I have to grade 8 more papers and a week’s worth of discussion posts. Yet, here I sit staring at my macbook hoping that it will just magically happen. I’m sitting in my favorite coffee and tea café listening to the chatter of others and the espresso machine. It’s relaxing. I don’t have to worry about anything (other than the fact I’m not getting any work done).
Every day, I wake up with a knot in my shoulders. I’m stressed out before I even leave my bed. I bring a lot of the stress on. I try to do too much. I try to make others happy while often giving up my own simple pleasures (I really want a f’n latte right now but I’m sipping black tea with no sugar).
My husband has PCS: post concussion syndrome. He has had 10 concussions (on record, I’m pretty sure its many more than that). He struggles every single day just to go to work. Why should I complain about anything? He has to fight constant migraines, memory problems, nausea, dizziness, blurred vision, spots in his vision, over stimulation from simple sounds and environments, and noise sensitivity. Sitting in this café would probably drive him insane. He fights depression that he can’t control. He has never been depressed before. He has mood swings and outbursts of anger that are so out of character and at times unsettling. He puts on a brave face and fights though every single day.
So, who am I to complain? What kind of an ass am I for feeling overworked, tired, and resentful? What a selfish person, right? I can’t lie- I struggle with those emotions every single day. I fight feeling resentful. I feel bombarded the second I get home. The other night I didn’t even get my coat off and the kids were on me. “Mom where is dinner?”, “Mom, I need help with my homework”, “Mom, my brother keeps touching my stuff”, etc, etc. All while my husband is home- laying down. I’ve created this monster. I want to protect my husband and allow him the time to heal from a bad day- every day. My kids have caught on. They too, want to protect him. The problem is that I can’t handle it all on my own. Well, maybe that isn’t true. I don’t want to.
I’ve come to expect and be able to gauge when my husband will have his truly bad days. Those are the days where he locks himself away in our bedroom with the lights off. I’ve become accustomed to it. I come home- ready for the onslaught. I’m sad before I even get out of my car. The man I married, the outgoing, funny, adventure-seeking man is hidden somewhere inside this other man. He is struggling to break free, but just can’t seem to reach the surface. So, I put on a brave face, I smile, and pretend to the outside world that everything is great.
The truth is, everything isn’t great. Being a caretaker for someone with PCS, or any disability (depression, PTSD etc) is difficult. It is draining. And people don’t understand. PCS isn’t something physical that you can see. People doubt it, even some of our close friends. They don’t see my husband on the days he is in our bedroom with the lights off and with a blanket over his head just fighting to stay here on this planet. I can’t lie and say that I don’t think about the majority of the stories you see about people with PCS or CTE. How eventually, it just becomes too much and the person commits suicide. I bury that fear, but it’s real and it is always there.
I grew up afraid to show my emotions. I was taught that you didn’t cry unless you wanted something to cry about. I am working on learning how to express my emotions now. Writing is the easiest way. I see that I am shutting myself down to my husband. It’s not that I don’t love him- it’s that I love him so much that I can’t fall apart. I have to be strong for all of us. He wants to tell me about his doctors appointments, the progress, or at times- the risks. He wants to share his fears with me and I simply nod my head. Why don’t I just reach out and hold him, let him feel how much I care, and tell him how fearful I am? Why can’t I listen and support him the way he deserves? I hate the closed off person I’ve allowed myself to become, but I also know it’s a survival technique.
Can’t I find a better balance?
I struggle with self-hate, doubt, sadness, and depression. I feel lost and alone. How do the loved ones get through this? How do we support and not lose ourselves? Our relationships?