All November long we will be sharing various stories and awareness pieces all over our social media platforms in order to bring attention to the nuanced needs of Caregivers around the world. Our hopes is to inspire others and create more conversation pieces around the real life celebrations, struggles and issues caregivers face.
Read on below for a special message from co-Founder of WAGS of SCI Elena Pauly about her experiences as a caregiver and the message she has for others.
In celebration of Caregiver Awareness Month I’d like to reach out to the pre-injury WAGs of SCI and speak on resilience.
My fiancé Dan, is a C5/6 quadriplegic. We were on a dream vacation in Cuba when he dove into a shallow end of the pool sustaining an SCI.
I navigated and fought for us to be brought back home for 12 days, ordered every MRI, took photos and sent them back to Canada to my family, who then forwarded them to the medical system here. The language barrier, local hospital and Dan’s made up hardware made our time very unpredictable and scary. I was alone and he was paralyzed.
When we returned home. I packed up our home and sold it. Took down every picture frame, every memory, folded every piece of clothing. Alone.
Since the rehab was outside our city. I lost my job, needed to finish up university- which was a two hour commute each way, took on a serving job just so we could pay for catheters. At one point Dan was sterilizing and and reusing catheters. The money we made off the house hardly covered 1 years cost of living.
We didn’t get financial support or a pay out as his injury didn’t occur at work. We struggled for the first 3 years.
I’ll be honest, there were times I didn’t think we’d make it. It was hard. I was his caregiver, day or night. I would leave classes and serving shifts when he’d fall out of his chair or have a bowel accident and run home.
All while also being my mom’s POA and she lives 5 hours away. Anytime she’d call, I’d hop in the car and run to her. She passed away in April. And I am without a doubt gut wrenched without her.
At the time of Dan’s injury we had been together for 3 years. I knew I could have left. Nobody was holding me back or telling me to stay. And trust me, I asked myself daily why I was staying…
The first thing I’ll tell you is it does getting better and it does get easier. The initial shock becomes more and more distance at the years go back, the celebrations and milestones happen. We began to see each other as each others shoulder to lean on. He was mine and I was his. We were open and honest. I learned that it was okay to cry in front of him. To express my sadness and frustration and it surprised me. Some days he would cry with me too.
There is no doubt that the system around caregiving is a failed one. We get tired, brunt out, resentful at the people who don’t show up when they say they will. I found myself standing in a room completely spinning wondering HOW did this happen?
Why doesn’t HomeCare show up?
Why are family and friends not showing up?
Why are outings inaccessible?
Why is the condom catch blowing off in the middle of our dinner date?
Where is the accessible taxi? It’s been 2 hours!
And, I still cry out of frustration because life for our partners shouldn’t have to be this hard.
So what changed?
We, made some tough decisions. We decided that we wouldn’t show up to outings that weren’t accessible. We wouldn’t break our backs for the comfort of others.
Dan went back to school. Going to school allowed him to have his medical supplies, wheelchair, even Baytec was covered. THIS one was huge.
I stayed because I saw the light at the end of the tunnel and him pulling for us gave me a new found admiration for how hard he pull for himself.
He’s supported me emotionally more than anyone I know. And it didn’t happen over night.
This community allowed me to find women near and far who have also come together and given a treamendous amount of love, advice, sisterhood and a listening ear. When Dan was injured, WAGs of SCI didn’t exists. I didn’t even have an English speaking Dr explain to me that what had happened to Dan was a serious injury.
We are now celebrating 10 years together and 1 year engaged.
I guess what I’m saying is that it’s okay to feel lost and confused and drained. That the human experience during this adjustment. There’s no doubt it suck but it does get better. We now focus on the things that Dan CAN do and CAN attend, and we CAN enjoy together.
Did you know that wheelchair accessible seats are some of the BEST at a concert?
Anyway, I just wanted to give some of you a little window of hope and light. It does get better. Things do get better. Our men have gone through such a huge loss and a huge change. Keep pushing forward and celebrating the good stuff. The good stuff is what will make the good life.
If you made it this far, thanks for reading.