Navigating Double Grief: Embracing Life with a Disability and Lost Dreams

My family says I'm a know it all. Unflattering yes, but an accurate statement. My natural tendency to point out other's flawed information blossomed when I became a grammar nerd after taking copy editing as a sophomore in college. I simply relish knowing obscure rules most people don't know or care about. One such rule is the difference between the words continuous and continual.

If something occurs continuously, if happens constantly without ceasing. If something occurs continually, it happens repeatedly but with breaks in between.

The heartbreak generated by becoming disabled can be described as both. Immediately after my four amputations, my heart broke continuously. There was no break, no time to recover or even take a breath. Wave after wave of pain broke over my head.

I'd feel my absent fingers flex - heartbreak. I thought about what my future now looked like - nothing but sorrow. The only time I wasn't being gut punched was when I was asleep. Every other minute was filled with continuous heart break.

Then as time passed, my heartbreak shifted from continuous to continual. Yes, lament still dominated my thoughts, but moments of peace, joy, and genuine gratitude began to fill the space between my moments of pain.

Yet it's still true that becoming disabled means you are suddenly asked to live with never-ending heartbreak. You wake up in the morning only to have your new way of doing life crash down on you, reminding you in an instant of all you lost. You go about your day, but to do so requires a routine you never knew to prepare for, adding to the weight you carry. At night, once your caregiver goes to bed and you're actually alone, the thought of having to do again tomorrow all of what your life required of you today weighs so heavily you're in danger of being crushed by it.

Though grim, this is the reality for someone whose life took a detour down a road she didn't even know existed, let alone a road she would have chosen to travel down.

Think of it this way: becoming disabled or living with an incurable chronic condition is to experience a double portion of grief. I grieve the way I must live now, hampered and limited by my disability. But at the same time, I also grieve the loss of a future that's no longer possible. I grieve the expectations that were burned up in the fire of all the changes to my life I've endured.

To get rather personal, what really breaks my heart is the loss of the future I'd expected. I'd made peace with my lack of a husband - I'd had plenty of practice shouldering that particular burden - but I'd always wanted to foster or adopt at least one child. Now I'm the one who needs care and can't imagine becoming sufficiently self sufficient that I'd be trusted with a child.

I didn't become a lawyer to make money, but I at least expected to not be on a ridiculously low fixed income for the rest of my life.

Dreams of owning a house also evaporated - I can't even live alone.

Perhaps this is why my grief, even nine years on, can still catch me off guard, still be felt, still need to be processed.

But even in the midst of all this, God is working, teaching me how to live with my grief. My heartache still happens, but less and less frequently. And God encouraging my spiritual fruit to flourish and grow slowly calmed my fears that I was incapable of handling the life God gave me.

Whether you're still deep in continuous heartbreak or you've transitioned to continual emotional gut punches, remember that God is right there, grieving with you. He knows what it is to have expectations that changed. He surely grieved when creation was tainted by sin and he had to do a last-minute Hail Mary through Jesus so we wouldn't be separated from Him.

So if you have someone in your life who had the trajectory of their life changed and seems to still be grieving, remember the double portion of grief they carry. Be kind. Be patient. Pray for empathy and understanding.

You can't pull your person out of their grief yourself but you can spiritually support them as learn to live the new life they didn't want but have all the same.