Building a Life With Adhesive Arachnoiditis

(Editor’s note: Dawn Gonzalez developed adhesive arachnoidits (AA) in 2008 after her spinal cord membrane was accidentally punctured by an epidural needle during childbirth. The severe pain Dawn felt that day grew worse as chronic inflammation spread in her spinal nerves, and soon she was disabled and bedridden. Her future looked bleak, because there is no cure for AA.

Thanks to the work of Dr. Antonio Aldrete and Dr. Forest Tennant, both now deceased, new treatments were developed to ease the symptoms of AA and make life somewhat livable again for AA sufferers like Dawn. This is her story today.) 

By Dawn Gonzalez

Around 18 years ago, my world suddenly became four walls and intractable pain.

Day after day was spent staring at the walls of my bedroom, wondering if this was really going to be the rest of my life. Would I ever make it out again? Just getting out of bed and making it to the bathroom felt like climbing Mt. Everest. One step took everything, and then somehow there had to be enough left for another.

There were also two little girls who still needed their mom. Getting up to be with them, finding them something to eat, taking care of even the most basic things took every ounce of strength available to me. Things that had once been so ordinary had suddenly become enormous.

Life was happening outside that bedroom, and there were times when it honestly felt like those four walls might be all I would ever see again.

That is where the battle began. It would take everything I had to make it to the living room with my girls for a few hours a day. Then came the front porch.

Just a few steps. Nothing remarkable to anyone else. But after being trapped inside for so long, sitting outside and feeling the air again felt huge. My world had gotten a little bigger. I remember the day I finally made it to the back yard with my girls in 2013. Just feeling the sun on my back and breeze against my skin again for the first time in a very long time.

That was only the beginning.

What followed were years of doctors, appointments, different treatments, setbacks, small improvements, and a constant fight to get some kind of life back. There was never a miracle moment when everything suddenly got better. Recovery happened painfully slowly, sometimes so slowly it was hard to see it happening at all.

Treatment after treatment, supplement after supplement, diet tweaks, and trying everything I thought might possibly help.

A little more strength. A few more steps. A little more independence. Another piece of life back.

There were many setbacks when I had to start again. Every hospital stay, every flare, every illness. Losing access to treatments that helped so much. I would be back to square one.

Nearly 18 years later, life looks very different. Most days aren’t spent in bed anymore. They’re spent with my beautiful kids, with my plants and animals, working on projects, and usually thinking about ten more things I’d like to be doing.

Every morning I wake up and have to face it again. Before the plans, the projects, the plants, or anything else, there is the reality of this body and what it will take just to get through another day.

Some days I win more of that fight than others. Some days pain wins and the plans have to wait. But every morning still means getting up and trying again. Every morning when I make it outside to have my morning coffee on the porch is a victory for the day. Every day when I leave behind those four walls is a huge accomplishment.

It’s easy to look at my life today and only see the limitations. The things I still can’t do, the help I still need, and all the ways life has to be worked around what my body will allow. So often I’m told “you can’t do that” instead of asking about and focusing on what I can do.

What’s harder to see is the distance between here and where this started.

The struggle didn’t end when I made it out of that bedroom, either. So much of life still has to be figured out differently. I’m still working to make my home actually work for the body I have now. 

I’m trying to get a vehicle (preferably with hand controls) to allow me more independence and more opportunity to do the things I really want and need to do. Things need to be accessible and where they’re actually used. Every unnecessary trip across the house costs energy, and there’s only so much of that to go around.

My goal every day is pretty simple: to be as self-sufficient as possible. To take care of myself, to need as little help as I can, and to have enough of myself left for the people and things I love.

That probably doesn’t look like much from the outside.

Making my own food. Taking care of my plants. Getting something I need without asking someone else to get it. Doing a little around the house. Spending the day out of bed. Being able to go to the grocery store or go on a small shopping trip or outing with my kids without a babysitter is my dream. To have the things I need accessible and usable to me without expending all of my energy just hunting everything down.

They’re ordinary things.

But there was a time when ordinary felt impossible.

There was no miracle that got me here. It took years of doctors, treatments, setbacks, adjustments, and thousands of tiny victories stacked on top of one another.

Many moons ago, the goal was making it to the bathroom.

Then it was the front porch.

Today, the goal is to build a life I can participate in as fully and independently as possible. A home that works with my limitations instead of making them harder. Enough independence to take care of myself. Enough energy left over to actually enjoy the life I’ve fought so hard to get back.

This life is still a work in progress. So is my home. So is my body. There is still more independence to fight for and more of my world to make accessible.

I’m not trying to get my old life back anymore. I’m trying to build a life that works for the person I am today.

I know what it took to get from staring at those four walls to standing (or wheeling) outside tending my plants. I know what it took to go from giving everything I had for a single step to having a head full of projects and things I still want to do.

The fight isn’t over. Every morning, it starts again.

But when the starting point was four bedroom walls, it’s hard not to look around now and realize just how much of my world I’ve already taken back.

And I’m still making it bigger.

Dawn and her husband Jose have created a GoFundMe account to help Dawn regain her mobility and independence, and continue her treatment.