Here is part of a letter that I sent to our families to put words to some of the things I deal with regularly. I still only have a few and faint memories of that first week after our accident. I used to think, “When I get back to normal, this will change or get better or go away.”  I’ve come to the realization and acceptance (I hope) that I will always deal with some after affects from my brain injury. Yes, there has been a lot of healing and I am grateful for all the healing that has taken place. And in coming to an acceptance of my situation, it means I am willing to work with my limitations, my disabilities, and not beat myself up or feel like I am worth less than I was before.

Dear Family,

      At the suggestion of our psychologist counselor, I will attempt to put words to what its like for me to live with a traumatic brain injury and what my family puts up with on a daily basis.

I want you to understand I’m not asking for pity or sympathy. The truth is, I’d rather not have your pity or sympathy, but what I would like is your compassion and grace. I don’t think you can even begin to understand, my dear hubby doesn’t and at times I think he must wonder, “Who is my wife? What has happened to her?” Our accident forever changed me and there are times I’m not sure who I have become. I see life very differently than I used to. I think differently than I used to. And as little sense as this may make to you- my head/mind feels differently than before.

So what’s it like to live with a brain injury? Well for starters how about always having your brain ache? Most days it’s just there in the background with everything I do, but there are times I get this sharp, stabbing shooting pain up the back of my head. I almost always hold my head as it feels it might pop open if I don’t. Then there are days when the head ache is so bad my vision gets blurry, I’m nauseous and dizzy. All I can do is lie down and hope everyone whispers and keeps the lights off.

The other thing is a noise in my head all. the. time. And I struggle to find words to explain this noise- – a sort of humming, static noise, like a radio that’s not quite tuned in or sometimes it’s a ringing sound. And during the day I usually don’t think about it as there is plenty of other noise and things and people that need my attention. But come bedtime when everyone else was asleep it used to drive me almost crazy- now I turn the music on and eventually drift off to sleep.

Then there are days when my mind feels like a dense foggy morning looks. And I just want to go back to “normal”. I feel very dull and I need you to repeat what you said as not a thing made sense to me. And on those kind of days or when I have a bad head ache I don’t remember things my husband or children tell me. They’ve taken to writing notes and things down for me.

Another thing that is difficult for me is to be in a group of people and it doesn’t have to be a big crowd. If two of the children are trying to talk to me at the same time, I go a little crazy and can’t hear anything either one said. Sunday mornings is especially bad. I can do okay with the sermon as long as we sit closer to the front so I don’t see as many people and I take notes and focus on the speaker, but Sunday school is more difficult especially if the class is larger and there’s lots of discussion. It takes so much energy to focus on listening what’s being said that by the time church is over I’m done, my brain just aches. And of course that’s when everyone starts talking and my ability to hear, to concentrate totally leaves.

I can no longer multitask very well. I have learned to plan my day and make blocks of time to do certain things and yes its all written out cause I wouldn’t remember what to do next. This is yet another problem for me- my memory. And I have had people tell me, “Its ok, I forget too.” Or “I have a bad memory, too.” Thanks for trying to sympathize but I’m sorry it’s not quite the same. Its more like I think I’m losing my mind or my ability to think to process and there appears to be no rhyme or reason when it will happen. My mind goes totally blank and I don’t remember what I was doing, where I was going or…..Here’s an example that happened recently: We were on our way to church, when all of a sudden sitting there I was thinking- “Where in the world are we going and why?” (Thankfully Joe was driving.) Yes, I was holding my Bible and notebook but that didn’t help. I snuck a look over at Joe and thought “he’s dressed up” and I looked at me again “so am I. Oh duh we are going to church. What is happening to me?” How can I forget we are on our way to church? I have no idea why it happens but it does and rather frequently.

As I said earlier I don’t want your pity. I’d appreciate your compassion and grace and a willingness to work with me. If you could email or write or text me the dates, times etc that I need to know about; it would make it easier for me to remember. And if I forget something you told me please don’t take it personal. It’s not that I have something against you. It’s only because my brain doesn’t work quite like it used too.

Thank you for caring and praying for us, RoseAnn