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.

Good True Colors

A person's true colors come out during the worst times of your life...so the popular quote goes, and I spent a lot of time thinking that was a terrible thing. As time has gone by and I've grown through some of those worst times, I've been able to see that it's a good thing to see the truth of that statement. It's good to see the truth of people sometimes, even if it hurts right down to your soul. The truth does indeed hurt, as another famous quote reminds. It's harder to see the truth about ourselves sometimes too!

I spent way too much time making excuses for people, who honestly didn't deserve them, just for the sake of protecting myself. Sometimes we go out of our way to protect others, sometimes we go out of our way to protect ourselves. Whether it's because they are hurting or we are, sometimes hurt blinds us to what we need to say or do, and we hurt much longer than necessary. I learned through great pain that it is perfectly okay and human to let go of someone who is causing me pain, even if that person once brought me joy. Sometimes people don't change, and no amount of our excuses for them (or us) can bring about a miracle, an apology, or a healing forgiveness as long as they are too present in our lives.

Sometimes you have to evaluate your losses too. Is it really a loss when someone leaves you? Is it really "devastating" when a friend lets you down? When people don't do what you expect/need/want from them at a time when you need/expect/want? When true colors are revealed, our own true colors are also revealed. We find that we were expecting things maybe we shouldn't have been expecting-from the wrong source. We might have been needing the wrong things. We may have been wanting what we shouldn't have been wanting in the first place. I think true colors are a set up! They are there as a wake-up call. Not to see who are the so-called "bad-guys" in your life, but maybe some of the choices we make aren't the ones we should have been making in the first place. Sometimes we make immature moves, expecting the other person to be mature and fix our mess. Ooh, I said that, and yes, I was talking about me! But hey, sometimes it's the other way around too.

Choosing gossips, shallow-minded people, people with other agendas on their minds, people who weren't invested in your life anyway, etc...Those are the ones we shouldn't have been depending on for our emotional support in the first place! It's no wonder when tragedy strikes in our lives, they are the first to disappear, say the wrong thing, say NOTHING, say rude or flippant things, and just don't seem to stick around much at all. We have to be responsible too, for relying on people too much, and for depending too much on people to give us support when they can't even support themselves half the time. I fell heart first into this trap, and I got my heart broken into a million pieces, and believe me, it has been a hard crawl out of it. When you invest in someone's life who you think invested in yours too, then find out they don't, it hurts your soul! But it teaches you too.

It has taught me that I should have turned to God first for what and Who I needed when my world started crashing down. When illness and tragedy were coming down around me, I needed to be still, and just wait for God. I also turned to my Christian friends, who offered prayer and Biblical support, which is what I needed most. I held fast to my family, of course, who kept me afloat. When God is given the opportunity to work, He will work. He will take a broken heart and mend it. He may not mend the broken relationships from before, because I've asked Him about that many times. His answer has been silent. I know that if He feels a relationship is healthy for me, He will bring it to me, and if not, I will not be a part of it. It is so much easier to let Him choose for me. He just needed me to pull off an Anna and "let it go".

I am sweetly surprised by the kind people He brought to me after my dad passed. A sweet lady from my former church blesses me with cards every so often, and I barely knew her before. I feel I know her in a new way now, and I am grateful for her life touching mine. My dear friends, though the circle is small, seem to know when I need a pick me up text, though their lives are busy too. I struggle to have a normal life at this time, dealing with illness, but they have not left me behind, and I could not be more grateful to them for their loyalty to me. Most people don't like to be bothered by "sick people", but I don't consider myself to be "sick". I am simply going through a challenge. And the people who are willing to go through this challenge with me, will certainly be going through my celebration with me too. As I've said many times before, I've made mistakes as a friend. That's no secret! But I'm trying to learn, and I don't want to repeat the same mistakes, and I am not the person I was before. I'm not even the person I was last year. Loss and illness tend to grow a person up a bit and change perspectives on things.

Don't be afraid to look at the colors of those around you, and make sure that you are in relationships for the right reasons. Be present for people. Don't repeat their secrets or their happenings in their lives to others. Be loyal to them and care about what's going on in their lives, or don't be there at all. Invest or withdraw. It's simple. Be a good, true color to at least one person.

Froo Froo Barbecue

This past week has been a real stinker of a challenge. And while I'm keeping the details close to the vest, let's just say "wow" didn't see that coming. I think it's a pretty good call that I'm in a major testing zone, and someone keeps giving me more tests than I have pencils for!   Sometimes life just keeps kicking you right square in the face, and you just keep getting back up. And sometimes you have so much negative going on that you just have to get back to the humor....or you might just lose your mind for good.

I had to go all the way to Ann Arbor to see my neurologist today.  On the way back we decided to try out a barbecue place, only because my doc was talking about how they had this nitrogen-processed custard we just had to try sometime. He wouldn't stop talking about barbecue and I hadn't had my lunch yet. Sneaky Chuck.  So, we were lured into this place mostly by the intoxicating smell that only barbecued foods emit, and we decided to forget our issues for awhile and pork out. Pun intended. Side thought, why do places always smell better than they taste? Exception: Burger King-Yuck and yuck.

We looked over the menu. Hmmm...This "barbecue" seemed a little "weird", I thought. I started looking at hubs kind of funny. I mean, this guy knows his barbecue. He's the best griller, smoker, and meat flipper in our family, so I already know this place has no hope with me at all. But I started looking at the menu items, and there was nothing basic. No "pulled pork" sandwich. No smoked chicken. No brisket. Nothing plain at all. I'm reading things like "topped with arugula, deep fried pickles, and chipotle mayo", "goat cheese topping, radishes, and some weird freakin' aioli", and on and on. I gave him my "this is a secret conversation" look, and he bent over to hear me say, "This is froo froo barbecue".

Yep. It's much like the last barbecue place we visited in a downtown area. It's jumping with loud music, I mean, really loud, but it's stuff you don't recognize if you're over 30, because it's somewhere on the satellite channel of "froo froo barbecue on the 2's".  And yeah, it had the weird ice cream/custard thing, but it tasted like that icy cheap stuff we bought at Aldi that we left in the freezer too long. I mean, I'm not against loud or new music, but it's gotta be good. This music made me want to grow a man bun, and none of the sandwiches even seemed to come with just regular ole buns. After seeing all of the strange and scary smoky things they put in macaroni and cheese, and the smoked croutons in the caesar salad,  I lost it. I mean, I'm somewhat of a foodie, but you messed with barbecue. BARBECUE. Stop smoking EVERYTHING! Stop trying to put pine nuts and lettuce on my brisket. STOP IT!

I wanted to cry out, "Just bring me a bun. on a plate. put some smoked meat on the bun. Put a bun on top. Bring me the plate. No sweet potato fry. Real potato fry.  No froo froo."  But instead, we ordered soup. Mexican SOUP. At a barbecue place!

We ate that mexican soup and that italian bread that came with it, and that really weird icy and not creamy ice cream, tipped our sweet server finely, and we high-tailed our 40 and 50 something butts out of there. Obviously we were not froo froo enough for that barbecue place at all.
There really is no place like home for the best barbecue anyway. Lesson learned. My doc should stick to taking care of my brain, not my belly.