Bracing for the Setbacks

Bracing for the Setbacks

I’ll admit it: I got comfortable. Life was finally beginning to settle after the tumultuous, exhausting ride of the past few years. I was fulfilling my lifetime dream of getting yoga certified (in Greece no less!) and with a little distance from my day-to-day life, I began to relax. I stopped hiding my cell phone under my yoga mat during class, telling myself the days of daily emergency phone calls were behind me. I was in beautiful Santorini for heaven’s sake! And in just a few days my husband, TC, was going travel by himself — for the first time since his injury — across an ocean to meet me for 10 glorious days of a seriously postponed honeymoon. Life would have to cut the Maslins some slack. If only for a month.

But, as we in the TBI world know all too well, that’s not how it works. Brain injury doesn’t go away just because you decide to go away. So when I got the call from home that TC had been hospitalized after a series of seizures, I was surprised by my own reaction. My mind immediately returned to that day two years ago, the day everything fell apart. I envisioned myself as I was that horrific day — shaking and sobbing uncontrollably in the waiting room, wondering if I would be a widow, whether my son would grow up without a father. The same fears suddenly flooded my brain. It was an extreme reaction to a situation far less severe, but a reaction rooted in one terribly traumatic experience.

 Logically, TC and I have always known to expect setbacks. Living with a traumatic brain injury means acknowledging the potential arrival of any number of health consequences. But this series of seizures was the first real setback since TC’s injury and I guess we thought we were in the clear, at least as far as seizures were concerned. To be honest, I try not to think too far into the future most of the time. I don’t really want to know what TBI looks like 20 or 30 years down the road. There’s nothing I can do in the present to change that aspect of our future reality, so I try hard not to feed those particular anxieties.

But, wow, did this setback catch me off-guard. It caught TC off-guard too, sinking us both into a mild depression that lasted for several weeks. We were incredibly disappointed, of course, at having to cancel a trip we’ve been trying to take for five years, but we were mainly upset by the prospect that so much hard work could suddenly be wiped out by something outside of our control.

Fortunately, TC has made a very nice recovery in the past month and with the exception of our canceled trip, life has returned to the “new normal.” But this experience has certainly given me pause. It’s hard to trust a universe that is so inherently unstable. It’s hard to feel safe in a life that has unfolded so differently from our plans. And the reality is that those feelings are just one part of the TBI experience. Without a whole lot of wisdom to impart on the subject of setbacks, I’d like to simply offer the following suggestions:

Call in your reserves.
When you encounter a setback — no matter how big or small — it is absolutely the time to call in reinforcement. For me, support came in the form of the breathing and meditation techniques I had been practicing in the weeks before. Sitting quietly as I drew awareness to my own breath forced me to stay present and keep my mind from worrying far into the future. For others, it may be phoning that one friend or family member who really “gets” it when you’re having a down day, or perhaps reaching out to an acquaintance in the TBI community. If I’ve learned anything, it’s that there are plenty of folks in the TBI network who are here for each other.

Prepare for possible post-setback depression.
Friends who have experienced other forms of chronic illness have also reported a similar type of mild depression following a health setback. I feel pretty good about how TC and I handled our sadness during this most recent experience. After acknowledging our disappointment, fears, and frustration, we spent a few days just living in those feelings. We watched comforting old movies, kept to ourselves a bit, and tried to take it really easy. After a few days of hibernating, we were ready to face the world again and the depressive feelings began to fade. It’s so important to monitor these feelings, however. Mild depression may not necessarily just go away, and staying honest about your mental health is critical. For many of us in the TBI world, depression seems to be constantly looming in the background. Be honest. Ask for help. I can’t reiterate those points strongly enough.

Setbacks stink, and while I wish I could look into my crystal ball in order to navigate the waters ahead, I recognize that setbacks are a natural part of the TBI landscape. Our world is up and it’s down and it’s often exhausting, but I am learning to appreciate and revel in every moment of quiet and calm.

Comments (16)

Please remember, we are not able to give medical or legal advice. If you have medical concerns, please consult your doctor. All posted comments are the views and opinions of the poster only.

Thank you for this article. It coincidentally came today when we are celebrating three full months since the last seizure for my sister. It has been 17 months yesterday since the accident and her severe TBI. I particularly related to your words about how the notification of the seizure put you back into that place mentally where you were when the accident with your husband first happened. It was the same for me during the first seizure and I was there with my sister, completely unexpecting of what was about to occur, and then down on the ground with her as she was seizing and not really knowing what to do but instantly transported back to those first days and weeks of uncertainty and fear and stress after the brain injury. It always feels great to read these blog entries from others and knowing that we are not alone in this and we can all be an inspiration to others. Thank you!
a beautiful description of what its like deling with setbacks. Thankyou so much for sharing a gift for us all, that has come from your struggles. Good timing to as i have had a bit of a set back over the last few weeks also and am getting back on track. Being in the Now, knowing that there is something way deeper and infinite that IS stable beyond the unstable world of form we live in has helped me a lot. All the very best to you and thankyou so much for your sharing and describing so well the ups and downs of healing from brain injury.
YES~ Meditation helps to calm the spirit & REfocus the Mind to more productive things in our world! IF you suffer from tremors(uncontrollable shaking)as I do, Meditation helps that ALSO!

Thanks Abby. Again, you NAILED it...

"Living with a traumatic brain injury means acknowledging the potential arrival of any number of health consequences."

My wife Sarah and I try not to think about this too much, but it's never really far from the surface. She worries. I know she does. Life is uncertain enough, but living daily with a TBI makes it doubly so. We talked about this just the other day and came to the realization that the best we could do was the best we CAN do.. and to let the future unfold as it will.  Keep sharing. Please.  ~David A. Grant

What a beautiful heart felt real piece. Thank you for sharing and touching those of us who are on the TBI roller-coaster also.
Thanks for sharing, my husband's tbi was a year ago, and he is still having seizures, which he denies. I am in therapy which is helping my depression and ability to deal with how I am now married to someone who doesn't even recognize me, Getting over the fact he doesn't like football was hard, that was such a switch in personality, How does one deal with the it when the person with the tbi refuses to get help with their depression, even when everyone health care professional involved is saying get some help with your depression.?

I hope things get better for you both. In my own research I have found a TBI coach on YouTube. She explains so much about her TBI. 36 Dr.s in seven years and she found the right fit. There are methods to use for relaxation, shopping, work, etc. I went through about 8 Dr.s to find the right fit. It’s been four years since my TBI. What a disaster it makes of the TBI survivor and those who surround them. I didn’t feel like fighting for my life at first, I thought it was over. The loss of self is so impacting. Acceptance of the TBI and continuous changes were the hardest for me. We know who we are and what we want in life, to being a stranger to ourselves and loved ones. There is a ton of guilt associated with lashing out and behaviors that make TBI sufferers withdraw from everyone and everything even more. Not being able to control yourself creates low self esteem. We don’t mean to hurt the ones we love. IQ drops, everything is so confusing and so surreal, we hide in the deepest of dungeons in our brain. If the brain were hundreds of file draws. Healthy brains have a few open at the time and manage to close them before opening others. TBI brains have all of the draws open unable to close any. Bridges Counseling in Anchorage have helped me tremendously. There is a genetic test to see what medications react well with ones genetic make up. Kristina Erhart did my test and I discovered that all medication previously did not work with my system.I found in research that most TBI sufferers have ADHD symptoms and can be treated with Adderall. I am on Adderall after discussing my discoveries on the subject. It’s a stimulant, but it helped more than I thought capable. Neuro Psych testing is offered and conducted by Lynn Hicks, and helps to know and understand where strengths and damage are. It is very thorough. I was able to go back to work part time a few months into treatment. It’s tough at times and exhausting, but an accomplishment and much better than sitting home marinating in TBI chaos. One thing no one tells you amongst many others, your hormones go into chaos. That adds another element to an already stressful existence. You husband can have his hormone levels checked by Anne Carter at The Aroura Health Clinic in Eagle River. Both Aroura and Bridges accept Medicaid, which I have and other insurances. Hopefully with good support and just trying to take the step to get help will make a difference in him, you and your marriage. I hope some of this has helped. It is a constant fight and battle with ones self. There is no way to do this without professional help. It’s too complex. Take care.

A little history followed by a suggestion for what it's worth. I suffered a severe TBI in a car wreck 19 years ago. I am a retired attorney (yeah, the wreck ended practicing) and in my 50s. I have never suffered a seizure, although I worry about it. A few years back, I read an article suggesting if I make it 20 years without, I'll be in the clear. So, Feb. 2016 can't come soon enough! Here's a thought you may discuss with the doctor - I have worked out pretty strenuously on a treadmill 3X a week for 14 years. My GP doc suggested this may be a reason for being TS-seizure free. I know it means decent sleep, stress-free, and depression free. If a seizure is abnormal, hyper brain activity, working out strenuously must limit the body's ability to be "hyper" anything! Just a thought, Folks. Good luck and hang in - this damn injury takes a long time to get better, and your support means SO much to the person recovering!
I love reading all the comments here. My son has the TBI, it will be a year August 25th since his accident. It is good to know you are not alone in your journey and that there is someone out there to vent to who understands what you are going through with your TBI survivor. As trying as it is sometimes, we are so lucky to have our son with us.
I had a moderate complicated TBI June 1,2011 and while recovery has been painfully slow as it is for every survivor I'm very close to being back to base line. I have never had a sezure, but I worry about it a lot a real lot the thought of going though that and putting my family through that AGAIN just makes my hands go clammy with fear!
I am a nurse and my daughters first seizure 18 months after her ABI was so unexpected. I was scared beyond words! Our life has changed tenfold and it's hard for so many to understand. She was in a Rehab Hospital for over 18 months learning how to walk again and OT/speech but the hardest thing she has had to do is find her new normal. Knowing she has to write everything down, the loss of friends, the Cognitive problems, the PTSD....she had ARDS from West Nile so recovery is still a long way off. We all take family counseling so we know how to best help her but it's heartbreaking.
Thanks for sharing. It is so hard for people to understand that feeling or to understand how much of an impact this has on the family member's lives. ...and who wants to be 'bracing' all the try to stay present but you do start to, if not forget, at least feel like things are becoming normal and fall into that comfortable space...the past year and a half have been a test of my mindfulness and yoga practice and some days it all rushes back... my best to you as you continue this journey!!
my TBI was October 11th 1978. I was warned by the doctor that I would probably have seizures. I don't think I've ever had one. I've been very lucky I had an additional TBI January 31st 2014. I'm still noticing more differences from that in myself before and after. I have a small book on Amazon called "I didn't die because God wasn't finished with me yet". It has some help for caregivers.
My husband is seven months in the TBI world he was doing well his processing was coming along really well and words were coming put a lot better then three days ago he was struck down with his first seizure wow I didn't realize they could be this bad. Went to er and then we went yo his dr next day dr upped meds for seizures but it has set him back months now processing is not good now headaches sleeps a lot will this get any better. This is the hardest thing to watch. I feel so along I try to work some but mow I don't want to leave him along. I never be able to forgive myself if anything would happen to him while I am at work. He is my world.
I am 4 1/2 years out from auto accident, which left me with a TBI. I have never had a seizure, but afraid of it. We have come a long way since that day. However I suffer with terrible head pains, a smell and taste that's horrid and nausea. It can come in the day or middle of night waking me up. I was wondering if any one can share with me if they suffer from head pains, smells and can taste it, with sickness feelings. Thank you, Gailann
I have the same taste & smell from a TBI 6 months ago which is a bland taste & smell. Don't have head pains luckily. Use to be exhausted but that has passed. When you don't feel good make sure to rest.