While reading the Modern Love section of New York Times recently, I came across a story that really hit home.
Margaret Horst, an urban planner living in Portland, wrote about her husband Christian, who had suffered a serious bike accident that plunged him into a coma less than two years after they married.
When Christian vaulted over the handlebars of his bike that day, the impact damaged his left temporal lobe and caused micro-tears to other nearby tissues. Christian spent three weeks on life support, then began the long process of learning to stand, walk and eat again.
Specialists advised Margaret to grieve her old husband and learn to love the new one. “This is a marathon, not a race,” they said. “Prepare for a new life.”
As Christian came home and took up the challenges of his new life, Margaret heard the same guidance from friends, family — even her therapist. “I think you need to grieve the loss of your husband,” they all said.
Good advice, she admits. But it’s hard to follow when you still make grocery lists together, plan family visits and sleep in the same bed.
The challenge of grieving when your spouse is still here
As a therapist working with couples affected by traumatic brain injury, this is a challenge I’ve seen hundreds of times.
Mental health professionals call it ambiguous grief – reflecting the strange experience of mourning the loss of someone who’s still here, yet seems like someone else.
In fact, grief isn’t limited to situations that feel final, like death or divorce. It can overtake us when we lose nearly any anchoring presence in our lives.
This is why people who suffer the loss of a business, a career, or even a beloved home may grieve deeply. Those who face life-changing illnesses such as Alzheimer’s disease or cancer also grieve the loss of a future filled with hopes and ambitions that may now be out of reach.
Why grief is a natural response to everything brain injury has taken from you
If you’re grieving the loss of your brain-injured partner, realize that you are not alone. There are many reasons for the pain you’re feeling right now.
The life you once had has vanished. It was shaped by the spouse you once knew so well, who looked and acted so differently from your “new” partner. You may find yourself asking, as Margaret did: “Who is this stranger?”
All the weight is on your shoulders. Every detail of your lives may now rest solely in your hands, from earning a living to cooking, cleaning and scheduling medical appointments. That’s a lot to handle.
You have less freedom. Your loved one may tire easily in social situations. Even a trip to the movies or a local café might be too stimulating. You may be feeling trapped, alone and even more stressed as a result.
Your own health might be threatened. It’s common for caregiving spouses to have trouble sleeping, eating well and getting enough exercise. So even though your partner is supposedly the sick one, you may feel weakened too.
Navigating your way through grief and readjustment
In working with partners of brain-injured people from all over the country, I’ve found that there are no magic answers, especially in the early stages of your recovery – which can take months or even years.
Grief itself takes time. Accepting your loss and feelings of grief that come with it are essential steps that won’t happen overnight.
Along the way, you’ll also encounter feelings of guilt. You may be angry with yourself for not feeling more grateful that your spouse survived. Rage, frustration and hopelessness are all natural responses to the loss you’ve suffered. You don’t have to feel ashamed of them.
If you’re hurting right now, reading Margaret and Christian’s story may let a little light in. There are so many sources of hope in their journey, and I think their living example will resonate with you as much as it did with me.
If you need help dealing with the unique challenges you and your loved one are facing, I am here for you.