Brain Injury Journal

Learning grace from my friends

So many of you have emailed, texted and called after reading my last post. THANK YOU. Your outreach lifts my day. On top of all the kind words, I have gotten questions. Here’s answers…

1) What happened?

The simplest explanation is that I had a virus, I was treated for it and then my body failed me. The medical diagnosis is autoimmune encephalitis and ataxia. The longer and fancier words include the preceding virus. In case you don’t want to use that medical tool called the internet, ataxia is when you lose muscle control and coordination. And encephalitis is a swelling or inflammation of the brain. Trust me, bad things happen when your brain swells.

The neurologist explains all of this in simple language. And why wouldn’t he? Maybe it’s because I have a brain injury that affects my cognition though we all know the real reason is that I’m not educated in the workings of the body to understand anything more complicated than “my immune reaction was confused.” But I want to know why? And not the metaphysical “why” (I’ll save that for another day) but why did my body do that. Could it happen again? More to come there.

2) Did you know something was wrong?

Yes and no. I had been on the mend from being sick but something wasn’t right. I was worried enough to email my doctor. When I saw a PA a few days later and couldn’t put words to what that “not right” feeling was, he listened and sent me home saying I was out of sorts from my viral infection but I should be fine. By then I wasn’t able to recognize my symptoms as worrisome. Why can’t I put a piece of gum in my mouth? 3 pieces of Trident sit on my desk and one in the trash but what’s going through my head is “there is something really wrong with that gum.”  I sit there curious – but not alarmed – about this poorly behaving gum. Then the phone call from my doctor’s office and more calls. 14-mile drive to the hospital? No can remember. And so this journey began.

3) Are you okay? 

No, I’m not. Really. In a short period of time, I lost everything I know about myself. And even though I’m recovering, there’s a litany of ongoing symptoms that make daily life hard. However, I am brought to tears (literally, I cry when I see my friends now) by friends and family and church members who’ve been so gentle and caring and giving to me right now.

4) Don’t you feel lucky? That could have been really serious.

You mean really serious like I could have died? Yeah, I wish I could say that I feel like I dodged a bullet but I don’t. Something is stuck in me and I don’t feel that profound sense of gratitude for my life that I know I should. It’s too soon. Maybe it’s cognitive dissonance that this is happening (translation: I need to fully accept that this sh**’s real) or maybe it’s too traumatic but given time I will have a different and more respectful perspective.

5) How can I help?

This is without a doubt the hardest question because asking for help isn’t how I was raised. I could blame my parents for making me too independent but that independence comes with courage and hope and the toughness to keep going when things get hard. I’ll never trade those in. While I’m being given the opportunity of a lifetime to get better at asking for help, remember, I’m still a novice! Open-ended offers are wonderful but harder for me to respond to. Throw something out there, anything and let’s go from there. It’s a lot easier to say “I don’t need a ride tomorrow but I’d appreciate it if you picked up a few groceries” or “I’ve been home for days and the only people I’ve seen are medical professionals so yes, a small visit would be amazing… oh and you’re bringing food, thank you, I’d love to catch up over a meal.” A neighbor showed me the way with this simple note, “I’m awfully sorry. Are you seeing visitors now? Can we come and visit and bring groceries?” Nailed it. Now I know what to do for others.

And to directly answer the question, I need practical help with groceries, occasional meals, driving and errands. And just as importantly, I need your kind words and prayers,  your company and your positive support.

And the last question is from me. Where does grace fit in all of this?

I know in my heart of hearts that this learning to ask for help, learning to accept help and learning to allow myself to be loved and cared for by others is something I am supposed to learn. It’s teaching me to accept grace whether I feel like I deserve it or not. Dropping off strangely specific grocery requests, bringing a meal or just hanging out and helping with some housekeeping might seem a modest effort, but I assure you that it is not small in my book. You are giving me something so much bigger. You are giving me grace.

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8 thoughts on “Learning grace from my friends

  1. Spread the word – sandra-bond-chapman/changing-a-common-belief-_b_7588400.html

    No longer can we falsely assume that brain injury survivors can recover only for a certain period or that they are destined to regain only a limited number of skills. The potential for improvement is far greater than previously believed possible. With the right interventions, BI survivors can continue to make progress repairing their brain’s health and their lives for many years. That knowledge should significantly change the way we think about–and address–this enormous public health challenge

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  2. Jennifer, thanks for following my blog. There is a LOT of information there. I hope it can help you in some ways. I enjoyed reading your candid and honest comments above. BrokenBrilliant is right, there is no time limit on healing with a brain injury.

    If you’d like to do a Survivor SPEAK OUT! Interview, I would be more than happy. You can email me at neelyf@aol.com.

    Donna O’Donnell Figurski
    survivingtraumaticbraininjury.com
    donnaodonnellfigurski.wordpress.com

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  3. Jennifer, I’ve got four blogs that I read. They are all very different. Three of them are specific to the area of brain injuries. Another is more about “loss” and “grieving” and the power of, well, “grace” and love. You’ve been inactive so I decided to reread some. You may have mentioned it, but how long ago did you have the virus that caused brain swelling? Your level of self-awareness, gratitude, humility, and self expression appear very high to me. While my areas of high level being may be different, I believe that they exist. For me, this has worked against me in getting true and effective treatment. It created a clinical picture of huge contrasts and inconsistencies which made people not take me seriously. The fact that I had/have a huge problem with sarcasm and making inferences as far as intent, I found myself returning to people who either did not care or thought I was something I wasn’t. The best case scenario for me has always been being considered “asberger guy” or “autistic-like” or severe PTSD. But more times than not the labels were much more damaging. Again the problem was that I could not see the big picture. I had times that I saw clearly or flashes of insight but I did not use them because I failed to integrate them into the relationship. People said later “if you knew it, why did you continue contact”. Have you had this experience? Have you felt like the most insightful dumb person that you ever have met? Hoping the best for you. Luka

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  4. I appreciate that compliment – I’ve been trying my best to use hope and grace to get me through what has probably been the most devastating thing to happen to me in my life. The last three months or so has been unreal to me – I *know* this happened but I am still having a hard time processing it. Writing has been giving me an outlet but it exhausts me so I’m not as prolific as other bloggers. I do believe that living our lives with intention and seeking the light is the only way forward – and it sounds like you are embracing that. I hope you keep it up!

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