Your whole world may be flipped upside down and it may be incredibly hard to see a future. When I was first injured, I couldn’t feed myself or brush my teeth and I was in complete fear. Fortunately, there is hope and function that can be gained, in any size. With that comes independence, in any size. The doctors told me I would be ventilator dependent for my entire life! Even if I could be off the vent for an hour, that meant I was independent from the vent. It’s unforeseen diagnosis that may suck the hope out of us but press towards optimism. There’s always room for healing and growth, and I can 100% say that I believe Jesus can fully heal an SCI victim, or any disability for that matter. With this new life, my friends and I would like to give you hope and advice for the next days, months, or years to come.
Test Your Habits of Needing Help
My first piece of advice is to stay determined and focused on your independence. I’ve gained a lot in seven years and I believe you can too. Always try new methods or adaptive devices that can give you better independence. If you can, change what your caregivers do for you, create a time interval of being home alone, or force yourself to try adapted activities without someone there to ask for help. The more you strip yourself away from assistance, the more you may realize how independent you can really be. For some activities it may mean strength training, whether that involves your lungs, biceps, core, or legs.
Explore your new world
My second piece of advice is to go out and seek adventure. You’ll realize that life can be accessible – not fully, not 100%, but for the most part it is. You’ll learn what type of places are fully accessible, where you should bring portable ramps, and what places you might need a little help, for example assistance at a restaurant to cut up your food or using a parking garage.
You won’t know what the world has to offer if you don’t experience it. Perhaps you have had a bad experience, but don’t let that get you down, get out and try it again.
My third piece of advice is even though you have a new normal, and your lifestyle might change some, but not everything has too. We can still be social or play adaptive sports. You can still do the activities you used to be able to, it just might look a little different. See your new world and make it fit as best as possible.
Curious about how it may affect your marriage? I am not experienced in marriage, but my good friend and fellow SCI, Eric, has been married to his wife Yvonne for 13 years. He has used a chair for the past 5 years and has gained new perspective, “I didn’t understand that a life changed is not a life destroyed. My mindset has changed dramatically since that night in the SICU. I don’t ride bicycles any longer and I have yet to travel internationally, but I do ride a handcycle and my wife and I have never been closer than we are today.” I love these words by Eric and the encouragement he provides.
Not only can you advocate for your community, think about your self-advocacy. You’re the only one that understands your strengths and weaknesses. You’re the only one that can fight for your rights and your health. Learn to become your own fighter.
You know your body best, and it’s up to you to take care of it. My good friend and fellow wheelchair user, Luke, says “take care of yourself! Do whatever you can to stay in good physical shape, I know it won’t be easy, but it will be worth it. Try and be mindful and careful of how you use your arms to save your shoulders and watch your posture – bad posture will have its way with your spine over the years. Bowel and bladder are two of the worst parts of SCI so drink a lot of water and use cranberry to keep the UTI’s away and try your best to eat healthy, fruits, veggies and fiber to keep bowel care from being a nightmare.” Health is crucial to our independence and quality of life.
What helped my transition the most was a wheelchair mentor. Don’t know where to look? Well, here are some ideas. You may find one at your physical therapy company or can ask if they have recommendations. A second idea is searching through specified Facebook groups. I am in a couple groups full of many SCI people. Questions are always asked and answered by experienced SCIs. Lastly, message me if you have questions! I’ll give you honest advice or if I couldn’t, I will connect you to someone else that uses a chair. Don’t be scared to ask questions, it’s the best way to learn about this new wheelchair life. It’s good to have a network of connections based around people that care about you and will fight for you too. We won’t make it through life alone. We are meant to be there for each other.
If you are confused about your faith, and don’t understand the position you are in, I encourage you to dig into the Bible and read stories of healing, how God moves, and how He loves his people.
I hope this helps your journey through life!