My spinal cord injury is one of the greatest things that could have happened to me. It has given me perspective of what’s important, put incredible people in my life, taught me to love myself, and made my faith stronger than ever. The opportunities outweigh the list of things I can’t do but I just would like to take a moment to mourn my losses.
- Wake up, Get ready, leave the house (in 15 minutes).
This adjustment has been the hardest for me. It wasn’t until 3 years into my injury I even acknowledged it takes me longer to get ready (which was the main reason I was always late). When I’m at home it takes me about 30 minutes to get out the door, when I’m traveling it may take close to an hour, (as long as all goes well.) Some days are easy, some days I put my shoe on and off 5 times because my toes keep rolling in the shoe.
2. My Ability to Use the Bathroom
I took for granted the days I didn’t have to worry about peeing myself or using catheters. Sometimes I have the sensation to pee, sometimes I don’t get it until I pee myself. I have a 2-3 hour window between catheterizations. I used to struggle with UTI’s, getting an infection in my intenstines (c-diff) twice and becoming immune to an antibiotic in my first year of injury! I then switch to Lofric catheters and don’t even worry about UTI’s anymore.
The weirdest part of my spinal cord injury has to be how I number 2. On the days my sphincter (your butt hole muscle) doesn’t want to work, I put a glove on and have to digitally stimulate my poop out. You read that right, I finger blast my fart box to poop. The bowel/bladder stuff wasn’t bad when I couldn’t feel it. Now I feel the pinch every time I catheterize myself and the finger entering my rectum. This is probably the weirdest and hardest thing for me to accept about this life.
3. My Mobile Freedom
I miss the days I could pack a backpack of clothes for the week not worrying about all of my medical supplies. Or when I could carry every grocery bag in one trip. Spend a day hiking. Jump into any body of water. Not worry about where I’ll use the bathroom while camping. One of my biggest struggles is asking for help. There’s this beautiful waterfall I used to go to in a park called South Mountain in North Carolina. I often dream of visiting it again but the stairs leading to it quickly remind me of my limitations.
4. How Easy it Was To Train at the Gym
I really took my health and fitness for granted before I was injured. Binge drinking and taking things I shouldn’t have, I partied hard. It wasn’t until the year before my injury I really started taking fitness seriously. It wasn’t 2 years into my injury I took my mental and physical heath seriously. I changed my diet in what I eat and what I view. I don’t watch the news scroll or Facebook because filtering what you take in mentally is just as important as what you eat. I’m the healthiest physically and mentally I’ve ever been. Some days while training I still can’t shake the haunting memory how easy it was to train at the gym pre-injury.
5. When I Chose to Be a Jerk
This is another struggle for me. Because my spinal cord injury is visible my brain injury is often forgotten about…until I lose it on a friend or say something off the wall. It’s exhausting filtering every thought that comes to mind. Everyday I work to be a better version of me, but some days this seems to hold me back.
6. Life without Logistics
The days of simply visiting a friend’s house or checking out that historic restaurant are gone. I wish I didn’t have to worry about finding a bathroom while camping. Or a pad under my air mattress so I don’t get a sore. Or my Axiobionics wearable therapy to maintain my muscle mass. I feel like I cannot go anywhere without all of my “necessary stuff”. When I visit friend houses I’m often plagued with worry. “I wonder how many stairs they have.” “I hope I can get into the bathroom.” True friends often don’t see your disability, forgetting the logistics that come with it, not taking your mobility limitations into consideration. In the same sense they will also do everything they can to help you overcome it.
So life looks a little different with a spinal cord injury. There are still a ton of opportunities it brings to you. You get a different perspective of life and get to see not only your physical but mental strength to adapt and overcome obstacles. It’s okay to think about your limitations, but don’t stay in life-long mourning of them, for you will miss out on a life full of opportunity. For my abled-bodied friends it’s important to remember this may happen to you at any time. Disability doesn’t discriminate. Don’t get so caught up in life’s woes you forget all of the things you have to be grateful for.
I may have a lot of “losses”, but I have a lot more wins. This injury has brought opportunities I would have never thought were possible! I’ve tried out for the NATIONAL CURLING TEAM! 🥌 I never thought of curling, never mind being involved in the National Developmental program. It brought me my love for helping others to use their obstacles to live the life they want. This injury taught me to love myself, and continue to grow into a better version of that person. Everyday it helps me strive to be my best version of me. It grew my faith stronger than I ever thought possible. And it has shown me just how limitless I can be. 💕 #wheelwithme
You are beautiful and an inspiration to all!
jesi you are a amazing woman and also very beautiful
Thank you very much!
It’s been 15 days since I returned home from my rehab program and a exact year since my accident. So I’m facing new things at home even though I was coming home for almost every weekend.
I started to feel a bit weird, not only because of this coronavirus thing and isolation but because I feel like I need to share the reality with other SCI. So reading this and other posts made me feel better, it’s like talking to someone and share the struggles. So nice
Thank you, very much.
Hi Jesi, i saw your Facebook Site and its interesting to read your posts. Your are amazing and i find it great how you are living and what you are writing. I will follows your posts! Greats from Germany:-)
Your a beautiful and brave woman.
One thing I strongly disagree with, is when you mention how your sci was the greatest thing that has happened to you 🤔🤔
I have to say Jessie what you have accomplished is amazing, not all of us can do what you’ve done ….. For many reasons, but I’m sure that if you didn’t have this injury, you would of at this time in your life , would of done the same or more amazing things as an able bodied person….
Love you still, but 99 percent of us sci peeps would not want this life….
Just my opinion…..
It’s all perspective. I wasn’t even a quarter of the woman I am now when I was able-bodied. Because of my injury, I am the person I am today, accomplishing the things I am.
Eres un ejemplo de superación e inspiración para todos los demás , una persona valiente y admirable.
Jesi, I just saw your website… Your an amazing person…
Jesi, I just saw your website… Your an amazing person…