The Not-So-Good Days

The Not-So-Good Days

My husband caught me off-guard last night as I listened to him shifting and rustling beside me, signaling the beginning of another long night of TBI-related sleep deprivation.

With his back to me, he asked, “Do you remember what I was like? You know, before?”

I sighed, uneasy about venturing into such emotionally laden territory at a late hour. Did he not already know the answer this question?

“Of course I remember what you were like,” I replied, gulping back the instinctual urge to tear up I experience when discussing my husband pre-injury. “It’s starting to fade a little, but mostly I remember.”

“Oh,” he said quietly. “Because I don’t.”

I knew what he needed to hear. He was pressing me for information, breadcrumbs to help paint a picture of the person he once was, but I really didn’t want to say more. I don’t readily open the vault of memories I have of the man I’ve been grieving for the past three years. I have found ways to make peace with his absence, but that doesn’t mean I still don’t miss him every single day.

TC doesn’t remember who he was. It’s a terrifying notion, but one that explains how a person can change in such subtle and unexpected ways and with such little awareness of the process. As he struggles to make sense of our lives and the events in it, he truly doesn’t know how he might have perceived or reacted to things in his pre-TBI life. It’s hard figuring out how to bury the old TC, that man I loved so much, while resurrecting him enough to help the new TC regain what was lost.

In my blog, The Not-So-Secret Confessions of a Caregiver, I wrote that not all days are good ones, a statement that has proven particularly true this month. Some weeks we skip through life checking off items on our to-do list, and we remain busy enough that TBI plays only a minimal role in our daily consciousness. Other weeks it feels as if we’re trudging through mud, exerting enormous effort, but we’re completely unable to move forward. All we can do is get down and dirty with our emotions as we reflect on the circumstances in which we’ve found ourselves. This usually involves at least one knock-em-out-fight-to-the-death as we cry buckets of tears and try to sort through a lot of anger we’re able to direct nowhere but at each other.

It’s a spiral of grief - acknowledging our lost dreams, owning our loneliness, and wishing so badly this thing had never happened. We could spend hours arguing, mourning, and deliberating, but we always end up at the same conclusion: we can’t change it, but we have to go on finding a way to love each other.

The bad days suck. They suck more than we let on to most people, and they drain us emotionally for days afterward. Perhaps the best way to describe it is this: a once monthly funeral for our former lives. It’s ugly and heart wrenching, but it used to be a ritual that took place on a daily basis, not a monthly one, so I choose to view that as progress.

Not all days are good ones, and sometimes I’m at a loss to explain how or why a bad day has emerged. Often it’s when we’re struggling for grace or sincerity as we welcome happy news for our friends. While we both detest the concept of envy, it takes a lot of strength to ward off resentment about the time and opportunities stolen from our own lives. More frequently the bad days emerge after a prolonged period of stress and exhaustion, two very familiar concepts to other young families. Sometimes the stress is discernible - a leaky roof, an unexpected bill, etc. – and sometimes it is just the stress of having been stressed for so very long. Even on the happiest, lightest days, my mind is still preoccupied with concern and worry about TC. Will he slip while walking in the rain? Will he be able to speak well at today’s meeting? Will he fatigue himself trying to do too much around the house? The worries are endless, despite hard-earned logic reminding me that it is rarely the things we devote our worrying to that end up knocking us down.

And then there are the bad days for no clear reason. It could be as simple as a memory of easier times flashing briefly in my brain, or a moment in which I count the decades remaining in our lives and wonder how we’ll ever have enough energy to survive it. It could be that brief moment, watching my husband trying to unload the dishwasher with his weak right hand, which just pierces my heart, reminding me of all the pain we’ve endured. It doesn’t have to take much. The reminders of our struggle are everywhere, everyday.

I give our family a lot of credit for how upbeat and determined we’ve remained in spite of things. We are not living a life of bad days. But I also want to acknowledge the monthly funeral, the not-so-good days, and the moments of defeatedness, as these too are part of the natural TBI landscape. The heaviness is inescapable, but it is the only pathway to the light.

Comments (18)

In 2 days, we will celebrate the 5th anniversary of when our lives changed. We choose to reserve this day as a celebration of life, as my husband is a survivor and we need to recognize that! But this blog so accurately depicts our daily life it's amazing. For many, they try to understand our situation now, but unless you live through it, you cannot relate. Seeing that someone has gone thru a practically identical scenario is alarmingly comforting. Thank you.

Oh my gosh, what a breath of fresh air this site is! I stumbled across it and so glad I did! Is there some community to sign up for?? How?? My husband of nearly 18 years went in for a simple EGD. 39 years old with NO health problems. Well, the short of the long is he woke up with signs of a severe stroke. He was transported by 9-1-1 of course. They started the dangerous anti coagulant, TPA. Within minutes I thought we'd lose him as he threw up blood everywhere and was intubated emergently. He went into a coma and was on a vent in icu with no reflexes. They basically said to say my goodbyes. I was completely devastated. By the grace of God he slowly started progressing and eventually on to inpatient rehab. It's 8 months later and the medical investigators determined that he was overdosed with 3 times the propofol he should've been. On top of that, they did NO vitals. In summary, he was suffocated for unknown time. He now walks, talks, moves everything. No real visual evidence of what happened. However, he's not the man I married and I grieve for him. I miss him. I often feel so lost and broken

Thank you for putting into words what I have struggled with for four years now.  I like the "funeral for what was" idea.

At least he had a caregiver. I sit alone day after day. My parents made arrangements for me to have a home to live in rent free. I live close enough I can walk to the grocery store and buy my food. I have tried making friends but I scare everyone away. It has been 5 years since my Severe TBI. I have no good days all days are the same.

Thank you for this....

Thanks for your letter. Bad days suck. It helped understand our situation. My wife of 32 years says she'll love me anyway she can have me. After Wednesdays Dr. apt. she has only come home and gone to bed. Two degenerative brain diseases means she will loose me long before I die. I don't like the thought of my family watching my decay. I was great once!  I think she too is mourning my loss. My big problem is I can't talk to her about it and keep any joy in the house. I feel like I'm a dark cloud but I know they want me above ground. Nothing like having the Dr's say "sorry. there is nothing we can do". Thank you for helping him. I know how grateful I have been to have Beautiful.   

I've had several brain surgeries as a result of brain cancer and seizures.  I wasn't aware that the trouble i am experiencing learning and concentrating and the trouble handling stress and other emotions was considered a TBI.  I thought once I had the "life-saving" surgeries I would be able to go back to my self and job and life but surviving cancer and seizures isn't what it's cracked up to be.  Now instead of sleeping at night i try to understand and make sense out of what has happened to me like if I do I will overcome it all.  Rationally i know that's not possible but at 2am who's rational anymore?  I am a burden to my family.  I can't even collect disability.  I cannot commit to any engagement more than the day of because I never know what the next day may bring.  It might be another bad day in which everything is impossible for me.  I know you don't understand this in the least and judge me as being unreliable and lazy,  If only you could be me for a few days and i could be you.   Why did I fight so hard to survive?  Where does the survival from TBI come from?  With cancer I had friends and family and doctors but with the disabilities from TBI i have nothing.  I can't even read a paragraph on a sight like this.  Today was a "good" day, I only broke a few things around here...

You are such a gifted writer -- and your points are so well expressed and "spot on" for so many families going through what you and TC are facing every day.  My son is 7 years post-TBI.  I will always miss the "old son," but I have come to deeply love and respect this "new" post-TBI son, who in many ways has matured so much and is such a blessing to others now in ways he didn't make time for pre-TBI.  And on those not-so-good days, I pray for strength and endurance for both of you.  You are only three years into this new life; it DOES get easier, improvements are made, especially as your TBI survivor becomes more aware of his deficits, learns more and more coping mechanisms and skills to deal with those deficits, and as the brain continues to rewire itself.  Keep up the good fight -- I will be following your progress on your blog.  :)

A dear friend shared this with me & Wow did this ever hit the nail on the head with what I go thru with my husband the survivor & I the caretaker.

I had a related conversation with my husband just today.  He made the statement that he was no longer himself anymore.  Part of this is emotional outpouring from losing his job that he returned to before he was really ready.  I had to tell him (and it's true) that he is still "who" he was before.  I still see the parts of him that make/made him who he was.  He struggles with things he didn't have to struggle with before his TBI, life is harder and more challenging, but the essential qualities of who he was are not defined by the job he held, or how much energy he has, and how productive he can be in a day.  Sure, they were a part of him... and he misses those abilities, but he is still the same person, just affected by new experiences and challenges in life.

Thank you so much for sharing. I, like you, have a husband with a TBI, and go thru the same thing day in and day out, as you. I have not quite come to terms with it all, and may never, but we just take one day at a time. It truly is a whirlwind of emotions, good days, bad days, a grief, a loss. It helps to know and read of others going thru the same emotions, because there are days we feel so alone. I thank you once again for your article. Thoughts to you, your husband and your family,

Thank you for your transparency Abby. You have just described the life that Sarah and I now live. So many see just our smiles, never seeing us on the painful days... when tears are shed and our old life continues to be mourned. I still struggle trying to remember who I was in my first life. As time passes, I think about it less. Please continue to share your journey. So many people, people like me, need to know that there are others who share the same challenges.  ~David A. Grant

My family member has severe diffuse Axonal injury. Post two years has outbreaks of anger and that anger sometimes spirals into a rage where he is unable to calm down. He states he has problems controlling his anger. Very scary at times. Especially for his children and his wife. He has sleep deprivation, severe headaches, problems controlling impulse, confusion. In our family we pray that The Lord one day by His Will to help him improve.

I can relate to this 'monthly funeral' when a close family member suffers from a TBI. Ours hits sometimes when I am least expecting it. Thank you for sharing.

Thank you for shedding light, and beautifully written, Abby.

My son has TBA due to a brain tumor. Unfortunately , he remembers how he used to be. I still have "funeral" days. You describe exactly how that feels.

I am tearing up so much, I am not able to finish reading... I am one trapped like your husband. 3 weeks ago diagnosed with Lupus SLE on top of TBI from a hemorrhagic stroke. I know I am not the same as I was prior to the stroke, you expressed so well what my own family is going through. From a patient standpoint, I worry this is exactly what they are going through and I miss my old self too.