Your Advice For New WAGS of SCI

WAGSofSCI

Hey Ladies

We wanted to open up the discussion to this important forum area about mental health. We all know how much this injury effects our partners AND us on a daily (hourly sometimes) basis mentally and emotionally - and how we never feel like we can talk about it without feeling guilty. We both know that when our partners were injured, we put our feelings aside because we felt like they weren't valid.. after all, he was the injured one, not us. But after while of shoving our feelings under the rug in order to stay "strong" we felt that our feelings came out in other ways. Sickness, stress, hopelessness, with no one to talk to. We felt like we were prisoners of our own minds because there wasn't anyone available to us in Rehab to speak with about our feelings and needs - the focus was only on him. 

We want to change feelings around this and support our sisters feelings as valid. As a caregiver and partner, we are just as much impacted by this injury as he is - our lives change as well but in very different ways.

Our first question for this group is:

If you had any advice for a NEW WAG of SCI, someone who is just starting out in this life and needs support, what would you tell her?

skosills

This is a hard question. We are 16 years post injury (T7 complete) and I don't even remember what it felt like to me at the time because we have been so busy since. We got engaged two weeks before the injury, and got married about six months after...in between, I finished up in grad school (instead of sitting in the library to write, I was in the rehab center). Then we had a kid two years later. And we have been living happily ever after :-). So the whole new injury thing is a blur now. And yes, it does get better.

I think this is something that affects you as much as you let it. Like people say, let go of the emotions or it will eat you up inside. Let go of feeling like disability is the end of living, and just keep going. You may have to change your dreams, but so what - that happens all the time to people. You can still dream big in other ways. I may be weird in this way, but I lost my mother as a young child so even an SCI to a partner was something I felt I could handle, I'm already a survivor. If it's your first time with a major adverse family event, it's harder, no doubt. It's OK to ask for help and rely on others even if it's just to cry/grieve so you can move on. The grief process is important - your image of yourselves as a couple has died - once you get to acceptance it's so much easier to stay healthy mentally (and physically).

We were, and are, economically stable which is a big factor. It's not the economic level you are at, so much as the stability, that is important. It might actually be easier now that there's GoFundMe etc., but we had a big group of neighbors and friends help build a ramp for example. It's bumpy, we needed job accommodations, there were adjustments. Money worries are a big deal for mental health. It's OK to ask for help.

Getting to a place where you can look forward and not back, that's really helpful. A friend of mine told me, "you should always look forward, not back, because then when the door slams shut it hits you in the butt instead of in the face." I know that's not practical advice, it's just an attitude I think helped me.

WAGSofSCI

skosills said:

This is a hard question. We are 16 years post injury (T7 complete) and I don't even remember what it felt like to me at the time because we have been so busy since. We got engaged two weeks before the injury, and got married about six months after...in between, I finished up in grad school (instead of sitting in the library to write, I was in the rehab center). Then we had a kid two years later. And we have been living happily ever after :-). So the whole new injury thing is a blur now. And yes, it does get better.

I think this is something that affects you as much as you let it. Like people say, let go of the emotions or it will eat you up inside. Let go of feeling like disability is the end of living, and just keep going. You may have to change your dreams, but so what - that happens all the time to people. You can still dream big in other ways. I may be weird in this way, but I lost my mother as a young child so even an SCI to a partner was something I felt I could handle, I'm already a survivor. If it's your first time with a major adverse family event, it's harder, no doubt. It's OK to ask for help and rely on others even if it's just to cry/grieve so you can move on. The grief process is important - your image of yourselves as a couple has died - once you get to acceptance it's so much easier to stay healthy mentally (and physically).

We were, and are, economically stable which is a big factor. It's not the economic level you are at, so much as the stability, that is important. It might actually be easier now that there's GoFundMe etc., but we had a big group of neighbors and friends help build a ramp for example. It's bumpy, we needed job accommodations, there were adjustments. Money worries are a big deal for mental health. It's OK to ask for help.

Getting to a place where you can look forward and not back, that's really helpful. A friend of mine told me, "you should always look forward, not back, because then when the door slams shut it hits you in the butt instead of in the face." I know that's not practical advice, it's just an attitude I think helped me.

Thank you SO much for this valuable advice. This will help So many women (and men)