No Such Thing as Fair

No Such Thing as Fair

On the 18th of August, we revisited what is the fourth anniversary of my husband’s brain injury. As the day crawled nearer, I felt the gravitational pull of this mighty event drawing me back to a familiar place: my moods became darker, old memories resurfaced, and I was a little more tender than usual. Most days I look around at my life, a happy and hard earned reconstruction, and I tell myself, “This event no longer has power over you. You are OK.” But for a few days in August, I can’t help but look back.

We are living our new normal, and it is better than I could have ever imagined during those first weeks and months post-TBI. I lost the husband I knew, but parts of him gradually returned. We fought for our marriage, and we’ve managed to hold on. Our son, just 21-months old at the time, is now an awesome and confident 5-year-old. And at the end of June, we welcomed our daughter, Rosalie Grace, into the world. With a lot of love (and help!), we have made many beautiful miracles in the past four years.

I know I’ll never stop wanting it all back - a husband with a clean bill of health, a partner whose verbal communication isn’t limited or confused by aphasia, the days we lost to hospitalizations and therapy. I’m human, and we humans always want just a little bit more than we have. But I’ve learned to keep my expectations in check by revisiting them frequently and being honest about how I’m managing.

I don’t utter that popular phrase, “It’s not fair,” anymore. After all, I don’t feel entitled to complain much about my life. I know we are living well in spite of our challenges. With a new baby in tow, however, the dynamics have shifted in our family. These days my attention is in high demand. When I find myself with only one arm available to type, eat, prepare dinner, etc., I have to bite my tongue from verbalizing frustration. After all, my husband hasn’t had the full use of two arms in nearly four years, and there are no breaks from his limitations. It’s wonderful being a new mother again, but it’s also taxing, and as much as I struggle to admit it, sometimes I need help. How do I ask more, though, of someone who is already giving their max?

Most caregivers have found themselves at this crossroads: trying to balance our own needs with that of our loved one. We feel guilt for wanting, needing, or demanding more from someone who has had the misfortune of suffering a brain injury. TC’s limitations are not his fault, but they’re not mine either. So how do we find “fairness” in this new normal?

If you’re like me, your natural inclination is to take your own needs and shove them as far back into a mental closet as you can. You may even try locking the door of that metaphorical closet and tossing the key into the trash. But here’s the problem: you are a human, not a machine. Your needs will always exist. And the more we try to hide and deny truths from ourselves, the more ill and disconnected we become in our lives. It seems honesty may truly be the only policy when it comes to making sure caregivers receive care too.

In the world of brain injury, the closest we will ever get to fairness is achieving balance. Some days you get what you need and other days you don’t. For us, day-to-day circumstances dictate where our energy and attention lie. Our balance is always in flux. And on those draining, overwhelming days in which both of us need more than we can give, there is no choice but to keep our pride in check and utter those critical words, “I need help” to our network of supporters.

No, what happened to us four years ago wasn’t fair. But it also wasn’t an unshakeable destiny. Life has continued, and we continue to work hard to find a balance that works well for all. If you are at the beginning of your brain injury journey, the concept of fairness may feel especially pertinent. You may be wondering why this injury happened to you, and what you did to deserve it. It’s only human to search for the reasoning behind things. I hope, however, that if you’re struggling to reconcile what is fair in this world versus what is true, you’ll remember that it is absolutely possible to live a happy life after TBI. When it comes to brain injury, there is no such thing as fair, but that doesn’t mean you won’t find your way back to balance.

Comments (8)

A little over a week ago my brother was violently assaulted at a Ravens football game in Baltimore, Maryland.  He left that morning, with his wife, and close family friends, and before the game was over he was in the ICU on life support.  We are still in that fog of horror, grief, mourning, shock, and outrage that comes with the realization that our beloved family member has a serious brain injury.  We do not know how far he can come back from this, but we have been told - emphatically - it can never be "fully."  That part of him that will remain missing, and how large it is, will be unknown to us for a very long time.  The uncertainty of our future overwhelms us.  Like you, we are starting to immerse ourselves in TBI literature and data.  Through that, we found our way to you, and your blog.  Thank you for a glimpse into our future, which is at once encouraging and terrifying. 

Hi, thank you for these words. This November will be five years since my partner had a stroke. We're still not really in a great place. I miss him. I miss who he was. I miss the way of life we had before. Things are tough (money, support, communication) but we are getting there. For a long time I've felt guilty for feeling the way I feel but I'm beginning to let that "it's not fair" feeling go. This has happened, it could have been worse, we will get through this. Thank you for making me feel less alone. Annie xx

Thank you so much. my husband has Tbi and its been a difficult 2 years and we both almost gave up and lost sight of what we still have. 17 years together and hubby struggling to accept new him and i'm trying to get to know a new part of him. It's extremely difficult and I feel exhausted at times dealing with kids and finances, study, work, and a husband that's feeling lost. I'm determined we can do this so found your article inspiring.

Thanks for sharing this, Abby. It's always compelling to read something that's direct and honest, but you also make it a pleasure because of your gift with words. New babies are such a gift *and* so (so!!!) much work. It's amazing we have survived as a species. Thanks for baring your heart and sharing your story. Hang in there. We miss you here in Cap Hill!

Such a truthful and heartfelt article. It's hard to constantly fight back your own desires and needs, and then not feel guilty for having them at all. I had to take all last weekend off and just be sad. It was the first time in three years since my husbands accident. Today, the sadness still lingers a little but I feel grateful again that I get to love him all over again as a new and different guy. I'm sure I will be sad again, and so will he. But, we won't live there, just visit occasionally.

Abby, I plan to share this with my victimology class. You are awesome and don't ever lose sight of that fact! --Karen

Thank you Abby for your article.  I look forward to them.  I am the caregiver too, but I am also the TBI survivor and I savor your words.  This is the first year that Sept. 20th has come and gone without me not feeling the tug of those changes that came 16 years ago.  At first I was upset when I realized that the day had come and gone without my notice.  I often cannot recall what todays date is, but I always know when it is Sept. 20th.  Daily I am reminded of the effects of my TBI, but maybe that day will no longer be the noose.

Thank you for your insightful article. I feel that once I have begun to get over the angry that I developed, things have gotten somewhat better. I wasn't angry at God or life itself, more so angry for not being informed that brain surgery to remove a tumor could have a possibility of a change in my husband. I could of done more research in the beginning of what I should be watching for; instead, I was taken off guard and wasn't prepared how to handle the "change" and that brought many days of frustrations and uncertainties that added to months and now years. After 47 years of marriage, I felt he no longer loved me. I didn't understand the ups and downs that were happening daily. What has helped me is this website and reading the caregivers stories and the TBI individuals' stories to put things into perspective. THANK YOU to all of you that post your feelings, your experiences, your hopes and fears. That is what has helped me that last few months, I just wish I would of had that information 2 1/2 years ago. Better late then never though and I'm grateful for that!