Hi, New Member, Looking for suggestions and support

Welcome New member Check In
1

I’m new to TBI forums, so please bear with me.

My significant other suffered what we consider to be his most severe TBI/Concussion - in addition to cervical fracture - in 2014. (He’d had a history of concussions through 20+ years of contact sports.) We began seeing each other about four months after, and I’ve been next to him through everything since. He’s my rock, and I’m his.

I created this profile looking for suggestions and support after we’ve noticed some emotional and behavioral changes in the last few weeks.

I’ll share more details of our story and the changes we’re noticing soon, if you all are willing to listen. We’re both unnerved (to put it mildly) and I’d appreciate any help you can offer.

2

Welcome to the TBI support community, ejd. I’m sorry to hear about the troubles your partner is having, but I can assure you that you’ve come to one of the safest and most friendly places in the cyberuniverse for support. The people her are simply fantastic.

We’re glad that you found us, and we hope that you and your partner will be glad as well.

Seenie from Moderator Support

3

Seenie, I appreciate all the potential this medium offers. I feel like this will be one of the best resources for personal advice, and I really can’t thank you enough.

:green_heart:

1 Like
4

Welcome ejd5714,
I am sorry to hear about your partners problems as well. I am happy to listen. It has always helped me to come here, just knowing someone else who is dealing with some of the same problems. Also I have gotten good feed back. Hopefully some of us can be of help to you and your partner as well.

1 Like
5

Let me tell the story, and please be patient with me if things are a bit scrambled. We’ve had a hectic 48 hours…

My Partner played football, he’s told me, since middle school (in the 70’s and 80’s) all the way through college, and continued the sport he loved recreationally until about 10 years ago. He’s had “more concussions than anyone can count.” Three-and-a-half years ago, he fell on ice outside of his job. He broke his neck, and knocked himself out. Initially he was treated for the cervical fracture, but nothing was done for his brain injury until almost six weeks after the accident.

We began seeing each other about four months after his fall. I’ve been his primary and loyal confidant regarding his brain issues, and I hope I’m doing enough to walk him through his “new normal” as he’s struggled with insomnia, anxieties, and pain. We’ve discussed his therapies, medications, and the question of his neurological future. He earned a promotion at work in the Spring, which requires more focus and attention to detail, and he’s been excelling in spite of the mental fatigue.

He and I have both been concerned about the likelihood of CTE, and try to be aware of possible symptoms without letting it dictate our day-to-day life. I try to keep notes whenever I notice something off (more pain, repeating things, extra stress, increased anxiety, sleep patterns, etc.) Within the last two weeks, we’ve noticed that he has sent the same content in text messages that’s he’s told me hours or a day prior, that he’s been on edge, working to get a big work project done, and that he’s “passed out” from exhaustion. His dad told me that, when they were away earlier in the month, he didn’t remember a friend joining them for a few hours and their interactions. As my partner put it, he just “blanked.”

Two days ago, he seemed on edge in the morning in spite of decent sleep, but assured me he’d be resting while I was gone for the day. A few hours later, he messaged to tell me that he “exploded” when his ex and daughter were arguing, and that’s he punched a hole through the wall. In our three years together, he’s only ever once had a similar outburst when he threw a coffee cup.

He’s terrified of himself and what could be happening in his brain, and feels immeasurable guilt for his actions in front of his little girl. He asked me, “is this how it starts?” I didn’t have an answer. I’m scared, too, but trying to remain strong and positive while I look for options (testing, therapies/CBT, studies, etc.) We’ve planned a future built on our “No Matter What” mantra, and I would like him to see that it’s still possible to live this life.

So, that’s why I’m here. I’m asking all of you: Where do I start?

6

Where do you start? You’ve already started. You have reaffirmed your support of your partner. That support is worth more than you, yourself are aware of. In fact it is the most precious thing you can give. It can be such an easy thing to fall into the pit of self doubt, I did, but my wife could see and acknowledged that it wasn’t just me who was noticing, but her too. This was a ‘phew’ moment for me, “…it’s not just ‘all in my head’…” as I was told by the dr’s that it was.
The next part, well, the next part can be difficult. “It’s normal”, I’m often saying “WTF is normal?”, but the frustration, the confusion and the anger are all normal, they certainly were/are for me. Frustrated because I can’t do as I could before, I can’t remember as I could before. Confused because “Why can’t I?” and this all leads to anger, which gets vented at everybody else, when in fact my anger is with self. “I could before, so why the hell can’t I now…?” I have others who remind me of my limitations, that annoys me, so I push myself to over come these limitations and pay for it in pain, which frustrates me even more. I can wind myself into such a mess, it makes living with me absolute hell. How the wife puts up with me at times I’ll never know. I’m forever apologising to her. For the first year after my last incident I don’t think there was a morning where I didn’t wake up and say “Sorry”. Eventually she told me that if I didn’t stop apologising she’d bash me and give me something to be sorry about.
We all need a way of dealing with frustration, confusion and anger. For many TBI sufferers the way we used to deal with our day to day trials and tribulations is no longer possible, so all those ‘coping skills’ we had have gone, evaporated. So now what? Initially I internalised them, this was self destructive to the extreme and I needed someone else (my wife) to identify them for me. I had this view that the problem was me, so I (metaphorically) bashed the daylights out of me. I pushed myself harder and harder, telling myself I was building stamina, when in fact I was driving myself further and further into the ground, getting worse and worse. I thought that eventually my body would catch up with my pace, but it wasn’t happening. This caused anger and the slightest thing would set me off. The wife told me straight “STOP”. In hindsight I knew but the dr’s had told me that it was a choice thing, that I had chosen to ‘Give up’ when this could not have been further from the truth. But the more I pushed my body’s limits, the more my body pushed back. I had to learn to listen to my own body and that was very foreign to me.
CTE is a relatively new thing and has really only recently been acknowledged as a serious and debilitating condition. Back in the 70’s and 80’s there was no such thing, then in the 90’s it started getting ‘some’ recognition. Now it is a confirmed/known condition, but still the full impact is little known nor understood. Like many brain injuries you will find people who think they know all about it and others who will think it’s all a state of mind thing coming out with statements like “…Ohh toughen up princess…” Grrrrrrrrr. Statements like that just add to our own self doubt.
The reality of all of this is that the only people who truly know the full impact of a brain injury are the sufferer and their loved ones. All we can do is support each other on this hellish route we are on and that is exactly why we are here, to support each other.

Merl

1 Like
7

@Merl, I really, really needed to read that this morning. Thank you.

I’m never giving up on him. I told him he’s stuck with me until the second Tuesday of next week. (It’s one of our goofy things to say to our kids when they’re impatient.) I finally saw him smile, which was the reassurance I needed.

Thank you, again.

1 Like
8

As stated previously,

Merl

1 Like
9

ejd5714,

“I’m asking all of you: Where do I start?” It seems to me these movements between you and your significant other may at times have patterns and rhythms, then other times there may just appear grandiose delusions. His mind may race wildly because of these delusions. He may also feel terrified by his own fears, which then he feels he cannot possibly escape because this fear originates within him. From my experience, fear is where my rage and aggression comes boiling out. When my mental connections go haywire this creates delusions, emptiness sets within, and then I draw on the fear. I will become detached from myself. Then I will do what parents do after losing a child and to stop the tormented memories of this dead child I throw away everything that reminds me of this child. I completely isolate from my environment, from other people and from my inner life ----- from my ability to think, to feel, and to do.

This creates a hole inside and for some reason human nature abhors a vacuum or emptiness. It is repulsive. Also for some reason my human nature will become obsessed with defending myself from this emptiness which can get me caught into a downward spiral. It is like my fears are being fulfilled: the world is meaningless, I never did amount to much, and there is nothing true or valuable to believe in. There is no security or power here, as it brings about insecurity and powerlessness. For me this creates an attraction to darkness and my mind then fills with more hatred and more rage, which is a negative way of filling the hole.

My impression with your significant other is his anger appears to be at this hole, emptiness, meaninglessness, or vacuum. If there is no meaning the cells can become overheated and erupt in aggressive impulses. A person can also go into a glowing hateful silence. Naturally people are repulsed by this kind of behavior and the isolation can deepen. In a sense, aggression is to counterattack this emptiness. It is to keep the sense of self alive and then it fills the mind with hatred and rage.

What I am trying to say is we are all afraid of being empty or feeling nothingness, no value. The brain injury will make this extremely clear, as it feels like there is nothing in the world which we can identify with. There is nothing left which we can attach ourselves. For me this is where my mental connections go haywire. The terrible dilemma is this fear and rage seems to make a life of its own, which we forget our true value and remember what we should forget. And sure this lesson on “nothingness’ is not difficult to understand but it is difficult to act on ---- thus boiling rage and aggression.

So back to your question as to where do you start? My suggestion is learn to validate him and learn to affirm his value. Look for those situations where he seems to come alive and communicates genuine security. Acknowledge this to him and the security it offers you. Look for those places within him that offers tremendous support and qualities of strength. Help him to feel held up by this strength and this deep support. What you will be trying to teach him is to be courageous, even in his disability. Courage, might also be called fearlessness or the absence of all fear. Courage is what can face this void within and courage is what arises from the heart to help him to be present and deeply grounded.

Being a leader for him will also take deep courage from you. Just realize a good leader is clear and a worthwhile sense of direction, as well as a means to attain your goal. Courage, to me, is your objective and it is the largeness of spirit that uplifts and ennobles everyone.

1 Like