Mourning

Mourning, grieving, hurting

Those are the words that describes how I’ve been feeling on and off for the last 7 months or so. With having the flu on and off for 2 months, getting injured and having the CRPS flare up randomly.

Complex Regional Pain Syndrome takes a lot out of the people who have it. It changes almost everything. I have learned that between the fifth and tenth year of having this disease new side effects start to crop up. And this year in March was my 7^th year of having CRPS/RSD. I’ve had a new host of crappy stuff to deal with. But in dealing with the new side effects, uncontrollable vocalizations, having the CRPS flare up in my stomach and intestines and having them swell horribly, issues with my memory, more brain damage, etc.; I have had a lot of low moments. Moments where I feel if one more thing happens, I will crack, break apart, and then disintegrate. I’ve been mourning for the life I could have had without the CRPS, for the life I could be having if I was more in remission. And I’ve been grieving for all the things CRPS has taken from my life, for all the things people take for granted every day; like being able to get out of bed, walking and not suddenly falling face first on the ground, or accidently stubbing your toe and instead of it feeling better in a few minutes waiting days for it to feel better or to be able to walk on it. I grieve for what my family goes through with me. Cancelling plans because I physically can’t go out. Them getting hurt trying to help me when I start to fall or have non-epileptic seizures. I am hurting for the anxiety I feel well up in me almost every time I leave my house or go to do something. Because I think of “What will happen if I fall and get hurt?”, “What if I have uncontrollable muscle spasms and non-epileptic seizures?”, “What if I overdo it and pay for it for days later?”. A whole lot of “what ifs” and not a lot of answers. I mourn, grieve, and hurt for the box I feel sometimes closing in around me, suffocating me. And I would feel terrible for feeling this way. I want to be strong not only physically but emotionally and I have had that shaken a tremendous amount so far this year.

But I realized something the other day when I was talking to my Mom. (Please, everyone, talk to someone you trust about how you feel, a parent, a therapist, whoever, it helps!) I realized that it’s ok to mourn, and hurt, and grieve with deep sorrow for what I’ve lost. And mourning is not a one-time deal. It’s a process. Not a process of steps like being sad and then angry (not that you don’t feel all those things), but ones of sustaining an injury, the CRPS/RSD flaring up again or flaring up worse or in a different spot, doing all the physical therapy, figuring out how to do some stuff without a proper functioning limb again, because it doesn’t really get easier with each injury (though I am pretty good at brushing my teeth and eating with both hands now 😊 so positive there, right?) We grieve for that limb, for the pain, for the lack of use, for having to surmount those seemingly insurmountable odds (again), and for having to deal with old and new side effects. But by grieving, hurting, and mourning we show ourselves how much we truly love life! It sounds completely counterintuitive, I know, but mourning gives us the time we need and the outlet for all those overwhelming emotions we are experiencing, and then we realize we’ve made improvements, we’ve gotten the CRPS more under control, we’ve had some good days, because if we can hurt that bad imagine how good we can feel.

Earlier in this post I talked about what others take for granted, walking, being able to control their vocal cords, having a planned trip that goes to plan (if that can truly happen for anyone). But I don’t take things for granted anymore and that makes me happy. I know that if I can feel that deep level of hurt, I can also feel a deep level of joy. We grieve because we know things can be better and we want them to be better and we’re sad and mad that they’re not. But by holding on to the knowledge of the good that can be, the joy we can feel, we can make it through every injury, every setback, every tear-soaked-pillow-night. And maybe we mourn every day for a few minutes, maybe every couple of weeks, or maybe with every injury. That’s ok. It’s good for us. Because if we can mourn, we can have joy, if we cry, we can keep on smiling, if we break, we can be put back together as something even more glorious than before. No matter what though, we can keep on living. And that’s the most important thing to remember, life is not just the good stuff. Living is all the good stuff, all the bad stuff, and everything in between. So, let’s all have a life well lived with all the stuff.

So keep feeling and going,
Sam