When I Grieve the Life I Had Before Occipital Neuralgia


I grieve every single day.

I never know which stage of grief I’m in because I flip flop hourly. I’m not grieving the loss of a loved one. I’m grieving the loss of myself. The loss of the life I once had. Now I live within the confines of my chronic pain, and it’s that thunderous pain that dictates how my minutes will go. Oh, how I yearn for my old life.

One minute I’m staunchly denying this is how the rest of my life is going to be. I’d shake my head “no” in the mirror, but the searing pain it would cause isn’t worth it. I’m angry that I have to deal with this condition every second of every day.

There are days that I find myself bargaining with my pain. Please don’t hurt that bad today so I can make it through this birthday party. Tomorrow I’ll lay on ice packs all day to make up for it — I promise.

Sometimes, I feel defeated and sad about all I’ve been through and who I am now. Other times, I feel like a pain warrior ready to fight the day.

On the outside, I don’t look like I’m battling an internal beast, but on the inside, I’m walking in my own shadow. I exist in a body that has never failed me until a few years ago. Life used to be simple. Make a plan to do something and then go do it. Now it’s like I have to put an asterisk mark next to the plans I make. (*Yes, I plan on being there, but most likely I’m going to have to bail.)

My calendar used to be filled with lunch dates, fun weekend trips, dinners with my hubby, my kid’s sports games. Now my calendar is riddled with doctor’s appointments and the bare minimum it takes to run a household. Instead of setting a calendar alert telling me I need to be somewhere in 15 minutes, my alert should be a reminder that with chronic pain I won’t be able to do that much.

Jumping out of bed with the excitement of the day ahead does not exist for me any longer. Gone is the refreshing feeling of a good night’s sleep. I’ve been lying on angry nerves all night, so I wake up feeling like there’s a jackhammer of fire working overtime in my head and my eyeballs are being torn from the sockets. Occipital neuralgia has taken away all of my freedom.

Never do I leave home without hearing the rattle of pills deep in my purse. I fear I’ll get caught red-handed by my pain, trying to live a life like a “normal” person.

Gone are the days of simply packing an overnight bag and heading out. A second bag full of medications for my other half comes along like an unwanted tumor. Yet I rely on this bag to live life and not be held hostage by my pain. I grieve the days when Advil was the only thing to be found in my house. I grieve for the loss of cuddling up on the couch comfortably and without pain.

My to-do list may have five items written on it, but my pain may only allow one thing to be completed. Even on a good day my energy is so zapped from battling daily pain that I crash after one outing. Life is not the same and my grief around that can weigh me down like a sunken ship.

I reflect on the days before occipital neuralgia. A simple run along the water is no longer an option. I can’t even walk to the bathroom without feeling like my head is being slammed against a cement wall. Exciting date nights with my husband are no longer an option. Lunch with my friends is no longer easy. Flying by the seat of my pants is longer an option.

For all of this and more, I grieve.

We want to hear your story. Become a Mighty contributor here.

Lead photo source: Thinkstock Images


Find this story helpful? Share it with someone you care about.


Related to Occipital Neuralgia

two women watch the sunset by a lake

To My Friend Who Still Makes Plans With Me Despite My Occipital Neuralgia

Dear Friend, Thank you for sticking by me even though my life has been consumed by chronic pain. Flat out, I’m not the same person I was a short time ago. Not only have I changed physically, but I’ve changed all the way down to my core. Pain changes a person. You continue to call even [...]
Bottles of pills in cabinet, close-up

Please Don't Judge My Medicine Cabinet

I have a secret and it gnaws at my thoughts every day. There’s a reason my medicine cabinet is locked up. Inside, it’s lined with little orange pharmacy bottles. Now, it wasn’t always this way so before you judge, let me preface this all by saying that I have tried every treatment and medication from Eastern to Western medicine. I [...]
woman with her head in her hands

What I Wish People Understood About My Occipital Neuralgia

I think I can, I think I can, I think I can … To me, these are more than just words in a children’s book. Somehow, I have to muster up the ability to take my 3-year-old to soccer practice while simultaneously caring for his 1-year-old sister. This sounds like any other day in the [...]
Watercolor portrait of young man isolated on white

On 'Escaping to My Own World' as Someone on the Autism Spectrum

I live with an autism spectrum disorder. That is, I wander an invisible maze with walls most people can walk through but I can’t. Sometimes, because I’ve managed to find a place in life situated along the devious routes I must travel, I forget the walls. And then, bang! I slam into one and stagger back, [...]