Never knowing what a SCI meant, I've found out the hard way. Before I got injured I've never had any health problems. The life before and after an SCI are two different worlds. I used to walk a lot (for fun), my legs used to be my best feature and I took care of my body because believed health was the most important thing. The situation may have changed, my body is different, but who I am is still the same.
I can't move but I'm moving on
Never knowing what a SCI meant, I've found out the hard way. Before I got injured I've never had any health problems. The life before and after an SCI are two different worlds. I used to walk a lot (for fun), my legs used to be my best feature and I took care of my body because believed health was the most important thing. The situation may have changed, my body is different, but who I am is still the same. Communication and trust. It isn't easy but not impossible to be in a relationship and to have sex.
Low battery and priority
It takes people with spinal cord injury a while to get ready for the day. It’s a process to get out of bed, dressed, bathed, and so on. It’s a physically exhausting process, but also mentally it takes planning, moments of frustration and motivation to do a lot, to get just one simple thing done. There’s often times where a person with SCI is so tired just after getting ready for the day that it’s difficult to have enough energy to put forth 8 hours of work. I work, but not full-time, simply because my body can't handle it.
Me against the world
The part that I find challenging is living in a system where there is no room for a person with a disability. The products you need are very expensive. Public spaces are not designed with wheelchairs in mind. Never being able to visit people because of stairs (they're everywhere).
Always stressed to be outside because of the lack of disability friendly restrooms.
But the worst part, how you are not treated like a human being. Sometimes people think you are not able to talk and then there are people who think you 'can' walk and the wheelchair is probably 'for fun'. The staring, the assumptions and the comments are part of your life now.
Without a wheelchair (one, that fits you) you are doomed.
A wheelchair is expensive. You probably need two. And it has to fit your body perfect, the activities you do and the type of disability you have. And don't forget 'the look' since you need it 16 hours a day for a minimum of 5 years until it's time to replace it again.
How to be strong (for yourself)
Mentally it's a lot to deal with. And I guess the more experience you have, the better you get at living with a disability. There are many reasons not to give up. For some it's a partner, or kids, a dream, an achievement, a status, a talent, religion or hope in future science. It can be all sort of things and a combination of many. I think you need to figure out what keeps you going. I try to motivate myself to get 'better'. I know I can do better and I want to prove that to myself. I want to show the world I'm not just a girl in a wheelchair. I have potential as a human being and I want to leave something before I die.
Many people have asked me, did you change as a person?
I do think the situation will ask everything of you that you've got and are. You have to go all in! I had to fight for… well everything… For my life, for a wheelchair, an adapted house, a job, for understanding and to be acknowledged. My fight isn't over, I have to deal with the consequences of having a Spinal Cord Injury everyday. There is 'no day off'. The SCI highlights my strengths but It did not change me.
Winter time with a climate like in the Netherlands sucks. The process of getting in/out of a vehicle or into a building takes time and getting “drowned” by the time it’s over is not worth it. I decided it’s often not worth it to brave the elements. Why? Changing clothes, wet or cold legs, the risk of damaged skin. It's too much risk.
Sharing is caring
Within the limits of the disability there is still enough to do. You have to find ways where there are no roads. That's not easy. And the few people in similar situations need to support each-other. No one understands what's it's really like, accept for people with similar injuries. The more we collaborate, share our stories and make ourselves be heard, the more movement towards change we can create.An accessible world for everybody that's a goal we need to work on together.
Health! Sit Smart
Eat healthy (plant based), no alcohol, no drugs, less sugar, less carbs. A lot of sleep. Exercise and do things that make you happy. (common sense right)? Especially when sitting all day everyday your diet is very important to keep in shape. You don't want to gain weight because the transfers will get harder. Since you will loose muscles mass, it's normal to lose weight when having a SCI. It's more common that people in wheelchairs get fat because the lack of exercise, but mostly because of the wrong diet.
Relationship & Sex
Basically the same as every other human in this world. The right partner will accept you as a person and the situation you are in. I first thought (when I was in the hospital) I would never find a man or would ever have sex again but that's not true at all. You might do things slightly different sometimes or take more time but what is 'normal' or 'average' nowadays? All healthy relationships are based on communication and trust. It's not easy but not impossible to be in a relationship and to have sex. YES, I CAN have babies like any other woman.
Losing touch with people. If they can't handle the fact that I use a wheelchair, that I can't go places because they're not accessible, not worth my while. People who care, will keep inviting you, look for solutions with you and make time to spend time with you. My social life is basically dead due to a combination of different things but I'm more of a loner anyway.