As you can imagine, it's really hard to be a Chiarian. Although people's symptoms look different, there is one thing that all Chiarians experience - some kind of chronic pain. Chronic pain is such a difficult thing to live with, it wears down every aspect of your life. It wears on you physically, mentally, emotionally, spiritually...
I've talked about how hard it is to be a Chiarian, but I haven't mentioned much about being a loved one of a Chiarian. The person who deals with me the most is my husband, Jeff. He could tell you all about being a supporter for a spouse in chronic pain, and I know it's not easy. It's stressful, I bet you miss the person your loved one used to be, you hate that the pain colors everything they do. I'm sure there are times you have no idea what to say.
Here are a few tips from a Chiarian about ways to support someone who may be going through surgery or has gone through surgery. Please take this advice with a grain of salt, these are my experiences and reactions to 'advice' given to me. And some of you who read this may have said these things to me - it's ok! Know that I know you're coming from a good place. And take into account my sarcastic personality.
- I can't tell you how many times I've heard "Take it one day at a time." That makes me want to choke someone. I can't really articulate why that is so frustrating to hear, probably because how else am I going to take life? '
- When someone is going to have surgery, and they tell you about it, don't make a face that looks like you've seen a ghost. Not just a ghost. A naked ghost peeing on an American flag. You know the face - bulging eyes, gaping mouth, complete shock and horror. Don't you think the person who is having surgery is scared enough? They don't need you to be freaked out, too.
- When someone tells you they are going to have surgery, don't make a face that looks like you just saw a box of puppies get thrown into a river. Meaning, don't make the pity face. Some Chiarians may want pity, most don't. It's a demeaning reaction, it makes a person feel small. It also amplifies the fear they may already be feeling.
- Surgery is a big deal. There is a lot of anxiety leading up to surgery. Just listen. Don't try to downplay their fears, tell them it will be fine, it's invalidating. Just be a good listener and let them know it's totally fine to be freaked out, you probably would be too. It's ok to offer your surgery experience or hospital experience (ex, I was petrified about the catheder, my friend who had a baby told me about her experience with it and that helped a lot), but make sure the Chiarian knows you are not comparing your two experiences. (Another ex, talking about how scared of the hospital I was, my cousin said, "When I had knee surgery, and I'm not comparing knee surgery to brain surgery, but this was my experience in the hospital...")
- In that same vein, please refrain from asking a Chiarian going into surgery, "Are you scared?" Really? Just think before that comes out of your mouth. Would YOU be scared if you were having brain surgery? I'll answer that. Yes. You would be. So don't make the Chiarian run through how scared they are unless they want to.
- The words I've heard most post-surgery have been "Don't overdo it!" I'm going to make some friends mad at me because they've told me this, but I just can't stand that advice/command. It makes me want to scream. Firstly, you don't know how my body is feeling, you don't know what I can and can't do. Someone who's had this surgery is cleared to drive 7 days after surgery. Drive, people! Operate a large vehicle! Secondly, give me some credit. I know how I am feeling, and if I need to back off, I will back off. I got a lot of grief for going biking. People are truly shocked with the activities I'm doing so shortly after surgery. And I understand that. It's so amazing what I went through and how quickly I got out of the hospital and bounced back (sort of). But do not tell me what is and isn't a good idea. Again, it's demeaning. You're telling me that you're more of an expert on what I can and can't do than I am. You're not giving me enough credit. (That being said, my husband keeps a close eye on me, and he is the only one that I let tell me, "I don't think that's a good idea." He's been with me through the whole process, and knows where I've been and how I'm feeling.)
Most Chiarians have spent years in pain and know how to live around it. A lot of times I'd find myself saying, "I'll be in pain here on the couch, or I'll be in pain our at Happy Hour. I think I'll choose Happy Hour." (I don't go for the drinks, I go for the $3 pork tacos.) Not after surgery, but before. If you haven't lived with chronic pain I don't believe you can even begin to understand the daily struggle that it brings. I used to get asked a lot, "How do you do it?" My answer is what choice do I have? I don't. I can choose to hole up in my bed and never get up like I feel like doing a lot, or I can continue to live somewhat of a life and try to enjoy it as best I can.
Whew, this is a long post. The bottom line is this - if you are a loved one of Chiarian, keep loving them. Try your best to be patient and forgiving. Offer a listening ear when they need one, and arms for holding when they need it. If you aren't sure what they want or need, ask them! Ask them how you can best support and comfort them. Chiarians - don't ever take those loved ones for granted, have patience when they don't understand your pain. They're doing the best they can, and are loving you the way they know how.
I have been so very blessed with the amount of love and support I have received through surgery. I am so thankful that once the surgery was over people didn't forget about me. I still need support, I have such a long way to go.
(Time for my winning Oscar speech) Thank you to my parents for coming making the journey to Milwaukee and going to all the appointments with me. And then another journey to Milwaukee for the surgery. Then another trip to Milwaukee is coming for my 7 week check up. Thank you to my mom for calling me and checking up on me, and calling me a brat. Thank you friends for the cards and packages I've received - it makes me feel so special! Thank you Rachele for being so flexible and not pressuring me to come back to work until I'm ready. Most of all, thank you Jeffrey. My husband sacrificed so much for me, not just taking time off for the surgery and aftercare, but before that. He was my biggest listening ear, and was always ready to hug me when I needed it. It makes me think of the vows we spoke 6 years ago - in sickness and in health.
If you have read this entire post, you deserve a pat on the back. Or at least a long distance high five. It was a big one.