The Loneliest Season

The Loneliest Season

It’s probably safe to say that the holidays aren’t the most wonderful time of the year for every family. Sometimes it feels like the weighty emphasis on traditions, family, and joy can have the opposite effect, illuminating the missing pieces in our lives, the things we desire but do not possess, and our unfulfilled dreams.

As I think back to the first winter following my husband’s injury, I have to admit I’ve never been lonelier than I was during those cold, long months. It’s hard to explain to people, even people you love and trust, what despairing agony it is to sleep next to a person who has little to no awareness of your needs or feelings. This was my reality for nearly a year. For other caregivers, it can be a permanent reality. Yes, my husband TC was alive, but he was no longer my husband. And I was no longer a wife. I was a robotic hybrid of a mother, a chauffeur, and a therapist.

My gnawing loneliness was only amplified during the holidays that year. With a 2-year-old son in tow (one I was desperately trying to protect against the misery of our new circumstances), I was determined to make the holidays merry and bright. I powered through with an astonishing amount of energy, purchasing everyone’s gifts, writing and addressing more than 800 Christmas cards, and even learning to cook a turkey (a true feat for a vegetarian like myself). I was on a mission, one that also involved hiding my real feelings behind a big, fake holiday grin.

The truth is I was so lonely I was worried I was going crazy. At night, I would close my eyes and silently speak to the husband who no longer existed. “TC, can you believe this?” I’d talk to him, believing that he was the only one who could possibly understand the insanity our lives had become. And yet, there was my husband, still alive, sleeping right next to me, seemingly unaware of my existence, and most certainly unaware that I was busy talking to his ghost.

 At my most lonely moments, I tried hard to force some logic into my consciousness. He’s doing the best that he can, I’d remind myself. Every bit of mental energy is going into his recovery. When he can be there for you again, he will. But these words were only of moderate comfort during the hardest hours.

TC was in his own prison of sorts. Unable to articulate himself through speech or to understand much of what was being said to him, his placid facial expression was his only means of feigning interaction with others. I’ll never be able to fully appreciate the depth of his solitude during that time period. I can only empathize with the shared pain of feeling wholly isolated from the ones you love most.

This was a dark period, one in which I claim many admitted failures. So desperate was I to break through TC’s wall of inattention that I occasionally picked fights in the sad hope of eliciting some reaction. This never proved to be a successful coping strategy, as lingering in moments of despair rarely conclude with any sense of satisfaction.

Within time, however, I began to learn an important lesson. To fight loneliness, you must be one hell of a friend to yourself. You must learn to practice self-forgiveness on a daily basis. You must also learn to identify each of your happy little pick-me-ups and then indulge in them at just the right times. The diverting power of good books and bad television should never be underestimated. Neither should a good cry or a journal entry. The writing I did during this period was more powerful than anything since. And even though I’d happily trade that misery for a little less creative material, I’m glad I decided to put those complicated, heartbroken feelings into words because they will forever remind me that I, too, am a survivor.

Good friends have also been essential in learning to live with loneliness, but I buffer this claim with a caveat. As I’ve discovered, not every friend is built for the “real” conversations you will inevitably broach. Not everyone is willing or capable of going to that dark place with you, and some may even project judgment when you do. What seems to be true, however, is that you learn quickly which friends are willing to get their hands dirty and jump in the trenches with you. And those are the friends you need on speed dial for the moments in which the loneliness becomes supremely intolerable.

Lastly, there is one simple fact that is always of comfort: you are not alone. It is a horrible, cruel thing to lose a human connection with someone, particularly a spouse, child, or family member. Those of us in the brain injury world have been there, and we know that the sadness can be unspeakable at times. You are not selfish for craving companionship or for letting yourself feel the full weight of your sadness from time to time. Over the years I have found a lot of solace in reading the writing of other TBI caregivers. Honesty is healing, and other people’s stories provide a powerful testament to the strength and resilience of both the brain and the spirit.   Sometimes it seems that simply believing in happy endings can help us steer our lives in that direction.

As you prepare to face any personal challenges this season, I wish you abundant peace, patience, and self-love. It’s lonely on both sides of this TBI coin, but never hesitate for a moment to lean on this network of supporters. You are always among friends here.

Comments (15)

Hello Friends,

Da haywo cheya "Those who walk the same path" Catawba language.

I met a woman online. The Love between US is undeniable to ALL. As we have now spent a little over a year courting and living as husband and wife. I have accepted the probable future of her heart and or thyroid failure, as my future could be 'anything' as well. We have had SO many serious arguments/fights/unclear disagreements that I finally decided to research 'Frontal Lobe Trauma' or TBI.

Aha! Now I know not to take her 'behaviors' personally. Although as we who are the 'healthy' spouse know, it IS personal. Striving to love someone with the symptoms of TBI, is truly unconditional love.

Sure, I could run and not have this in my life for the rest of time, but what about the love I have for her? How can a person turn their back on that and truly be happy?

How does a person chose to stay?

If a loved one came down with an ailment? Would we run? No. Then this is no different.

Am I scared? Hell yes. Scared of what I will see her go through. Not scared as much of what *I* will go through. 

Luckily, for both of us, I am committed to my love. Luckily, for us, I am committed to knowing Christ and having accepting Him in my heart. I am not a 'bible thumper,’ but Christ does teach us how to love unconditionally.

Every time we have a struggle, I breathe deep, exhale completely and give thanks.

We too are one year post moderate TBI. My son was hit by a car while skateboarding. He is healing but is a very difficult child who can't control his emotions any more. thank you for sharing your story.

Beautifully written and insightful to hear your experience as a caregiver. I try to understand my husbands experience through this chaotic journey with me as well as my children's... I am full of constant guilt and shame for something I had no control over. It's been almost 7 years since my TBI and my world has collapsed multiple times because of the lack of knowledge and empathy from loved ones. It is a very lonely journey for all involved and my accident has forever changed me, my childrens lives and my husbands. Every day is a struggle, holidays add extra stress... I just remind myself to do the best I can do and to keep expectations low... Some days simply getting my kids to their activities, as shower and a smile is the best I can do!

Its been eleven years since my husband's accident. We've been together for 24 years, married 14 years. 3 months ago he told me he wanted a divorce.  This is our 2nd attempt at therapy, but I still feel he is not trying.  I haven't been the ideal wife/caregiver, far from it.  But I have tried. I've come to realize I have no emotional support from him whatsoever, I am more of a secretary than a wife to him.  I'm angry that his injury did this to our lives and now it will affect our children.  

this was my favorite post yet of yours yet.  thank you for putting to words every single feeling i have felt.  there is nothing like a fellow spouse caregiver!  you inspire me and your honesty allows me to experiences those feelings i try to ignore.  thank you so much.

Wow. This really spoke to me. I really needed to know that someone else in this world could understand how I feel. Our situations are so unique. It is hard to know what we go through, unless you walk this journey. Thank you for your openness and honesty.

It has been 4 years ago since my husbands accident, we have been together for 23 years.. He is now 45 and I am 42. I love him so much but he has recently told me that he can't remember loving me, he can't remember our children being born or any happy moments. The only memories that he has are the negative ones, when we fight I can stop and remember something great that we did together but I guess he cant. It is killing me inside knowing that the man I love doesn't like me... I Thought we would grow old together and now he wants a divorce

I can't imagine what a caregiver goes through, but I know what a person with a TBI goes through who is trying their best to look after themselves, a 6 year old daughter, a husband and keep a house spotless. You speak of loneliness, well try being so lonely you speak to yourself for companionship. It's like I'm outside of myself watching and wondering who this new person is. Atleast you have friends. I lost all mine while I spent a couple months in a hospital learning to walk again. Like I have a disease that someone's going to catch if they come near me. Because I look ok from the outside, I get told "you're fine." I'm constantly angry and depressed because I know I'm not being the best wife and mother I could be, but I'm just not mentally capable anymore. I know I'm not the easiest person to deal with now, but I really have no controll over my thoughts and feelings. One minute I'm yelling and the next I'm crying. I constantly feel like I'm losing my mind and I should be in a paded room. I'm not feeling sorry for myself, like people believe, my brain is sick! It's definitly life changing!

He sounds like a lucky man . I have now had a TBI for almost 4 yrs . Everyone including my parents  and my wife have basically disowned me. If I'm lucky I see my daughter maybe once a month . depending on her mothers moods. I am more alone than I have ever been in my whole life.

This story sounds just like my life. Thanks for writing this. 

Thank you for writing this. 

Thank you for your kind and thoughtful words which came at just the right time for this caregiver.  

Thank you for sharing. We aren't alone in this TBI caregiver world. Sometimes it feels that way. I lost both of my parents before my sons accident. God knew they couldn't bear knowing Drew would loose so much. I struggle even four years out to find happiness in all we go thru...my son is a miracle an inspiration to me and others. I still struggle as a Mother for my Drew. I have a new Drew very loving and smart. I am blessed this season.  Best to you and yours.

Thank you. We are in our first year post accident. February 27, 2014 my husband, a ski instructor while working on the mountain was hit from behind by a skier who lost control going about 80 mph. He is now trying to heal from mutiple injuries. The "moderate TBI" is impacting our lives deeply. I too miss my husband of 22 years. Your feelings mirror mine. Love to you.... Betsy

Well written Abby, this article blessed me!  Thank you and Merry Christmas!!!