Chronic Awareness

It is rare to find a person who really listens and responds to what you say these days. People are so busy thinking of their next comment that they don't even hear what the other person just said to them. In these situations, I often catch myself saying quietly to myself, "okay, never mind.." to which the person says, "what were you saying?" It's kind of a dismissive way of treating people that seems to be present everywhere, and I don't mean to say it just happens to me. I notice it everywhere I go, and I don't really go a lot of places these days. I even get meaningless messages from a person who really says nothing of value to me, then doesn't bother to respond when I say anything of value back, so I'm not sure why this person is even "communicating" to me. Bored? I don't know. I'm a person, and I like being treated like a person with feelings, and as I've gone through more and more difficult things, I want to be around insensitive people less and less. What's the point of a relationship if there's no actual "relating"?

I've sat in a group of people, heard one person make a very heavy statement about her feelings, and the group just went right over the top of it like she never said it. I've had my own conditions treated like the common cold. I've seen people in stores break down in tears and people walk right by them like they are mannequins. And I won't get started on how people drive. That will just get me all worked up!  I don't get why people are starting to seem like all they care about is what THEY want, how THEY feel, where THEY are going, and how fast they can get there without getting bothered by someone else. It seems insensitivity is getting as popular as whatever the popular fad is today.

In describing my seizures during Epilepsy Awareness month, a person could only tell me how much worse it was for her, having to check on her sister throughout the night, as if I should be thankful that I don't have it worse. Here's a thought when dealing with people who have any chronic issue or just a common cold. "Hey, I'm sorry you're dealing with that. I feel for you!" Then feel free to share your experience. But never dismiss someone's experience or feelings by trying to make your situation or someone else's situation seem so much worse. That is called emotional dismissiveness. It makes the person feel like they have no support from you whatsoever, and if enough people act this way toward that person, it can lead to depression. Depression can lead to worse symptoms, including suicide. The truth is, lots of people have it worse than someone else, but that doesn't change the hell you are feeling inside, and it doesn't change that it is your battle and no one else's. Yes, someone has cancer and you have migraines. One is so much worse, and use that for perspective, but don't pretend you don't have pain because someone else's pain is worse. That is like pretending you're not happy because someone else can't be happy. Live your truth and be compassionate toward the unique journey of others too. But never dismiss your own pain, or you will carry it inside and it will eat you up in there. It's not whining, complaining, or being a hypochondriac. It's not your "nerves", or your "menopause". It's pain! Don't let anyone dismiss you, judge you, belittle you, or ignore you because you don't fit into their idea of what a person should be or how a sick person should look or act like. Everyone should have an illness for at least a day to know what another person has to deal with every day. Grow some compassion, is what I always say. Why do others feel they need to "fix you" anyway? Why is it so hard to accept that a sick person is sick and sometimes there is no cure and they have to learn how to live with something? It's not attention-seeking, it's life. If they had a cast on, everyone would sign it and bring a casserole! The judging needs to stop, and people need to be understood. Invisible illnesses are just as important as visible ones, and some of them take lives too. Epilepsy kills just as many as breast cancer, but you don't hear that on TV!

I think of all the times in the past  I've had to psyche myself up to go places because I was trying to adjust to seizure medication and my brother's death at the same time. I couldn't go anywhere by myself for about 9 months. I could not take a shower if no one was home because I couldn't balance well and I was so tired afterwards that I didn't even get dressed. I didn't walk to the end of the driveway without a stick in my hand. I rarely left my chair or my bed. I felt uneasy all the time. I would try to go places with my family, but keep the keys in my hand so I could escape to the car at any time. I often did that because I would start feeling strange in crowded places. Who would have ever thought a person like me would ever have to go through an experience like that? Afraid to leave my house? Unable to take my kids to school for almost a year, and when I did, I pulled over on the way home to breathe? No one knows what a person is going through....so be gentle.

Someone who was previously bouncy and friendly and fun with you can become the complete opposite on medication. People you once knew one way can change when they become ill, lose a precious family member, lose a job, a home, or any other major life change. Sometimes we get caught up thinking someone is treating us a certain way, but we don't have all the facts! One of my medications caused me to lose 50 pounds. The list of side effects on seizure medications is brutal. But remember, people only see the outside, and when people see you losing weight, it's interesting how many don't clap for you! I kept hearing, "you better not lose any more weight." "You're looking too thin". No one said, "oh my gosh, are you sick??" See how easy it is to distinguish who cares about you and who just worries that you might be "succeeding" too much? Yeah, one of the side effects is anorexia, which is a major loss of appetite. I had to be reminded to eat every day for months. Not everything is what it appears to be. I lost a lot of hair along with that weight too. I lost a lot of my happy-go-lucky personality and became a little more irritable too, even Natalie at one point said, "I want my old mom back." That medication is not my friend or yours. Thankfully, I am somewhat of my old self most of the time, but not altogether the same. Just a hint, if a person you haven't seen in awhile has lost a lot of weight, just tell them it's nice to see them. It's simpler that way.

Do you realize how many people are walking around on medications that totally mess with their body chemistry and their minds?? It's a struggle to function with a condition going on in your body let alone all the side effects people deal with. Then add to that people who give you a hard time about it or don't listen well, and then wonder why anxiety and depression are so common among the sick? I don't wonder at all. The suicide rate among people with anxiety and depression is scary, and they don't commit suicide out of selfishness. They commit suicide as a way to relieve immense emotional and/or physical pain that will not end any other way as they see it at that desperate point. It's a way to end pain. Period. I have had the blessing of getting to know a mother and sister of a young man who committed suicide at age 26, and neither one of them believe he was selfish, but that he could see no way out of his pain. They now spend their days educating about mental illness and supporting other families and people who struggle with any kind of mental illness or have suicidal thoughts. I believe that is the purpose of any pain, to use it to help others see a way out of theirs in the most positive way possible.

So I believe we are a part of helping people ease their pain. I know how the people around me can help ease mine, and I've become much more vocal about how I need to be treated. I've spoken up and said exactly how I feel when the wrong things are said to me. I won't take it inside and let it hurt me anymore. And if I see anyone I know or don't know hurting or struggling, I want to help them. Pain is a signal that something is wrong, but it's also a trigger to see what you can do to make it count for something good. Now that I have 3 conditions to balance, I often wonder what I'm supposed to do with these. Juggle?

I'm actually not one of those people who believes "everything happens for a reason". I think that's just a cool saying people share, but I believe things just "happen", and sometimes there is no reason. I think there is a purpose to the pain that comes from the thing if we are willing to let God use us to see it through. I don't know why my plan for my life is so vastly different from how it is seeming to turn out. If I could show you my goals and plans on paper and what has actually happened, you would see apples and oranges. For instance, I want to climb a mountain in Alaska one day, but physically, I can't even walk around a town for 2 blocks without bladder pain and major discomfort. I wanted to start a workout plan. I love to be active. I wanted to do more with my photography. I wanted to travel. I wanted my own business one day. I wanted..I wanted...I wanted...and none of it may happen because my health just doesn't agree with my plans. Also, I'm not a juggler by trade!
 But God says His plans are bigger for me, and even though my plans don't work out on paper, I have to believe my purpose is not what I thought it was, and I have to keep following whatever God wants me to do instead.

 For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11

This isn't to say I'm going without a fight. I am not always the most patient person!  Every day I wake up and I'm frustrated when I can't just go on my hour long hike through the back woods like I used to. I'm mad that I can't run if I want to, and I wonder about those future grandkids, if I'll be able to chase them around the park like I've always pictured. I can't spend time wallowing in self-pity or waste time wondering why, because it's actually pretty easy to go there sometimes.  As anyone with a chronic illness knows, it's a vicious cycle of "feel okay for awhile, feel terrible, nothing is helping, end of the world, start to feel a little better," and repeat! But I do have to remember to stop trying to force my way, because I have no control over this. Obviously.

 And keeping in mind there are a few people in my life with chronic illness,  they are some of the strongest, most compassionate people I know. A couple of my close friends, and my own sister deal with illness every day and yet are still able to help others. My brother Tim, who had  rare, experimental heart surgery is now over helping my mom with her chores when he is able. My dad struggled with a back injury since his early forties, had spinal stenosis, which was extremely painful for him, had a painful hip he was always dealing with, congestive heart failure, and yet he never wavered when offering help to others. In fact, he was helping at a funeral just days before his death. Not many people knew or understood how much pain he dealt with, but I knew. I saw it, and I saw the side effects of his medications, and he was the one helping me deal with mine. We connected because we both struggled with trying to find a way to live while illness was trying to take our joy away. My dad was always here helping me with anything I needed, never complaining about his pain. His example reminded me that joy comes from helping others, even while we are going through our own trials.

Obviously, everyone's journey is going to be different. Not everyone with MS will be able to do what my father-in-law can do, and some people with these diseases and conditions like mine have it much better or worse than others. I think the point is that we can't give up or give in to what we were handed. I will still find a way to help others, even if it's not in the way that I'm accustomed to helping. I'm already way out of my comfort zone, so what's a little farther? With God, anything is possible. Even healing, if we are hopeful.