I've been living with a spinal cord injury for ten years. I didn’t have anyone to talk to about how this injury would effect me in the long run. I had to learn my lessons the hard way, by trial and error. I have gone through things that I don’t want anyone else to have to go through because of ignorance. I have complied a list of ten things I wish I had known when my injury first happened. I’ve learn the hard way so you don't have too.
1. Exercise every chance you get
There’s a saying that if you don’t use it you loose it. This saying is the truth. You need to exercise everything you have as much as you can so that it gets stronger. I have found that when you get stronger you find more things you can do for yourself. Try to find things to do to make exercising fun.
2. Watch your skin
Now that you have a SCI you have to do pressure relief on areas of your body that are pressure points. If your skin starts to turn red you need to get off that area. Skin breakdown can lead to infection, surgery, bed rest and if left untreated death. I have personally had many breakdowns that have led to staying in bed for over a year and I’ve even had to have surgery because the wound and the bone got infected.
3. Keep your feet in a neutral position
When paralysis sets in the muscles that hold your feet in a neutral position start to droop it can lead to your feet pointing down and possibly rotating. Once this has happened it’s sooo hard to reverse. I know because when my accident happened I didn’t know that my feet would do this and now I’m having Botox injections every twelve weeks to help get my feet back into a neutral position.
4. Never give up hopei
It’s been ten years since my initial accident but I still have hope to walk one day. I don’t do a lot of therapy because unfortunately I don’t show much improvement from it. This doesn’t mean that I don’t have hope. I can have hope and still not expect to see it in my lifetime. Science is an incredible thing and I hope that within my life I’ll see a cure but I’m not going to put my life on hold to wait for it. Go out, have fun and enjoy your youth. You get older everyday and tomorrow isn’t promised. That’s the biggest thing I have learned from this accident, you could die today so don’t regret anything.
5. Don’t listen to your doctors expectations on recovery
Doctors have had driven into their heads that there’s only so much recovery possible after an injury. I was only given a less than 10% chance I would ever be able to breathe on my own or be able to move my hands and feet. I can use my right hand and I can even wiggle my big toe on my right foot. I was able to get my tracheostomy removed a year after my accident. I no longer need a ventilation machine to breathe for me. The doctors said that what movement I had recovered within the first year would be all I’d ever get back. I recovered more movement after a year of an initial accident. There’s hope even after ten years of paralysis.
6. Stretch daily
When you can no longer use your muscles they will begin to get tight and atrophy. This causes more spasticity and can cause pain too. You need to make sure that you keep your muscles stretched so your body can still move around. My right arm is stronger than my left, I’m right handed too, and I let my stronger side do all the work. This has caused my left arm to get tight. Now that I can move more in my left it makes it difficult because I cannot lift my arm due to the tightness I’ve been getting someone to help me stretch these muscles but it’s going to take time to get them loose. It causes a lot of pain in my left arm too.
7. Find a mentor in your area
I honestly wish I had known there were such programs available when I was freshly Injured. I was only quadriplegic young woman in my rehab and still to this day I’m the only one in my small town. I had so much information thrown at me as well as just being dropped into this new life. I didn’t know what all was available around me. It helps to have resources but just having someone else that I could talk to about some of the things I was feeling would have helped me out a lot. That’s why I’m a peer mentor for the Christopher Reeves Foundation, so no one makes the mistakes I made.
8. Stay off as much medicine as you can
Obviously we are going to have a need for pharmaceutical medicine, there’s so many things that we need it for. I have nerve pain in my shoulders, spasticity, depression issues, and even bladder issues that require prescription medicine. If I had let the doctors have a say in everything I would be taking a whole lot of medicine that I don’t need. These drugs in most cases just kill something else in your body. I try to find a way around being prescribed medicine like a natural supplement to do the same thing. I don’t want to kill my liver just to dull my nerve pain. It will cause a lot more problems down the road.
9. Be as independent as possible
I know that doing and finding ways to do things after an injury takes time and a lot more injury but try to do them anyway. You will feel accomplished in the end and you’ll learn to do it faster as you get comfortable doing it yourself. Sure having someone else do it for you could get it done a lot faster but you’ll never get better by watching someone else do it. It use to take me two hours to wash dishes but as I learned some tricks I can now do it in under thirty minutes. It pays off I promise.
10. Don’t compare your injury to others
In the beginning I would watch people online with a spinal cord injury and be envious of what they had that I didn’t. I would just be like “You have your arms be grateful.” I would kill to have my arms back, even without the use of my fingers. It would open so many doors for me. I had to learn that everyone has different types of injury so just because one person is able to use their wrist that doesn’t mean I will. You have to be grateful for what you do have and not envious of what you do not. It could always be worse.
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