Invisible illness and Me

What is an invisible illness. Technically it is any illness that you can’t see. What it is to me is….

Going to the store and seeing you in the parking lot. We haven’t seen each other in a while, so you stop to talk. “You look great! When are you coming back to church? The choir could really use another voice? Have you heard they need volunteers for the nursery. I know how you love kids, you should sign up!” It is nice to talk to someone, and I like you so I try to be polite. I want to have a conversation. It’s not going to happen though, because I can’t explain to you why I haven’t been at church, and won’t be volunteering for anything. For one thing, you probably don’t wan’t me to bum you out, and for another, I just used every bit of strength I had to get to this store today. I’m exhausted. Chances are I just left the stores wheelchair to walk to my car, doing my best to ignore the judging glares of all those that don’t understand how you can need a wheelchair if your legs work. I’m going to collapse if I drag this out, but you are the first person I’ve seen in weeks that I don’t live with and the social butterfly still clings to life inside this broken body. You will probably be my only social interaction this month.

Having an invisible illness is…

Waking up at 3am because I’m hungry. There is plenty of food. I am surrounded by convenience food, since it is the only thing I can make anymore. However, unrelenting nausea has kept me at one meal a day for too long. I’m are tired of being hungry all the time. Right now my stomach growls so ferociously I don’t even care if I can keep food down, I just want it to stop for a while. Ramen seems like a good plan. All it requires is water and three minutes. However by the time I get the water on the stove and open the package, I am already so exhausted that I have to sit down, right now, where I’m at. So now I’m sitting in the floor, and I can hear the water boiling, but the Ramen is in my lap and the stove is across the room. It takes 20 minutes to make a three minute meal. I don’t have the energy to care that it is missing half the water.


I did it though. I went to the store, made a pot of Ramen, survived another day of unrelenting torture.


Difficult Anniversaries

So today I had a shower thought. It was a little heavier than the ones I usually see on the internet though. It started with a question to myself. “Why is Jon-Eric’s birthday harder for me than the anniversary of his death?”. Every year I struggle with the milestones. The last day I saw him, the night the policeman showed up, the official day he died, but hardest of all is his birthday and that left me puzzled. Honestly I had never given it any thought until now, it just is what happened every year. Grief doesn’t really follow the rules though, so it didn’t strike me as odd per say, until I realized that it did indeed happen EVERY year.

Then I realized why. When you celebrate someone’s birthday, you are celebrating another year that they have been alive. All the other hardest days, relate to his death, but his birthday is supposed to be a special day, set aside specifically to let him know how happy we are that he is alive and part of our life.

I’m afraid I don’t really have anything to follow that with…. It was a moment of revelation for me, and understanding why I think and feel the way I do often helps learn how to deal with my thoughts and emotions, but I don’t have anything super uplifting to say. One day I will tell you all the amazing things God did for my family in the midst of tragically losing our brother/son, but that is a very long tale that I haven’t yet figured out how to write about. It was a truly blessed tragedy though. Maybe, I’ll find a way to share it piece by piece, like the episodes of “How I met your mother” until the whole story it told. We’ll see.

You are enough, even when you are not.

First, a random late night thought…

I have run in to people who do not believe in the uniqueness of individuals. The thinking is that so many people have lived already, that there is nothing you can do, think, or experience that hasn’t already been done, thought of, or experienced by someone before you. Therefore, no one that now lives, or will ever live, is unique.

I both agree and disagree. I agree that individual thoughts, actions and experiences, are unlikely to be yours and yours alone in all of time. However, the combination of all that you have thought and done, the thousands upon thousands of individual moments that make your personal mentality and history. I believe those as a whole, are solely yours. Making you one of a kind.

Now onto something more important…

Sometimes, I don’t feel like I have much to offer the people in my life, and even less to offer as a general member of society. I’m a genetic mistake. I live with an illness that kept me from attending college or getting a job, and most likely will continue to do so for the remainder of my life. I have to be financially, and physically cared for, and it is most costly to those I love. There are those who believe that if you look at the big picture, people who are such a burden to society do not have the right to exist.

Accepting that I am enough, has been hard at times. I may not be able to work, but something I am really good at is love. I don’t mean the hollywood kind of love. I mean that I care about people, deeply. I wish the best for most everyone, and I rejoice in their success and have a heavy heart when they struggle. I also enjoying learning. So something I can offer to those around me is moral support and what knowledge I have managed to acquire. I may not have as many answers as “Siri”, but I actually care about who you are, what you have to say, and where you want to go in life.

Which leads me to my final thought. Sometimes, you know what you want to do with your life, and you give every effort %100, to achieve your goal, and yet you still haven’t achieved what you set out to do. A simple example would be, lets say you want to live healthier, and you have specific goals to achieve that. You want to cut out fast food, do yoga and walk 10,000 steps daily. Sounds doable.

Sometimes, life is not as easy in action as in theory though. You have a desk job with long hours, so your are not walking very much. Kids want your attention at home, and you can’t seem to fit yoga in, and being on the go so much with work and the kids extra curricular activities, means the drive through is a regular part of life. By the time you have given your all at work, and given your all as a parent, you don’t know how you are going to find the energy to make the changes necessary to meet your goals. You try and fail again and again. That is ok. You know what else is ok. Asking for help. Maybe a friend could come over and help get you set up with easy, healthy meals you can grab on the go. Maybe you need an accountability partner for yoga. Maybe you need some advice for ways to add steps into your day, even with your desk job, or maybe you need to try something other than 10,000 steps.

It is ok, when your all is not enough. It’s ok to look to others for help and guidance. That old saying “If at first you don’t succeed, try, try again.” holds wisdom.  It doesn’t mean you have to try the same thing, the same way, again and again, it just says to keep trying. Don’t give up. Oh, and don’t forget that no matter what… you are enough.

Chronic pain, the beast.

Chronic pain is a beast. It tries to eat you up. Body, soul, and mind.

As I face another doctor appointment, another surgery, another out of state stay looking for answers, I wonder to myself “is this my life now?”. I never felt like I recovered from the last surgery, and here I am facing another one.

Once, many years ago now, I was an athlete. When I could no longer be physically fit, I focused even more on my music. Started preforming for many local functions, did a few charity concerts, sang in choir. When my health declined further, I stuck to singing at church, started doing more crafts at home. I created my own teddy bear pattern and made teddy bears out of thrift store jeans. Now, one morning of singing becomes three days of severe head pain. Tendonitis and back pain keep me from sewing or playing the piano. Is this how the rest of my life is going to go? Losing the ability to do one thing after another until there is nothing left?

The doctors told me when I was diagnosed that my condition is progressive, I knew it would get worse over time but not this fast. I have seen other patients fight so hard for their old life, that they will put themselves through whatever it takes to get their original self back, and they destroyed their body in the process. They are now wheelchair bound, taking countless medications, just trying to survive. I’ve seen some patients accept their diagnosis so completely, that they don’t try to do anything. They sit home sending each other messages about how awful life is. I have seen some patients, fight just to have a life. Not their old one, just a life lived to the fullest their situation will allow. Some succeed, others are still just surviving, because there is no formula you can follow, no road to success that you can map out. It is just you and your beast, fighting for power, every day.

The beast is big and strong and sometimes he takes a bite out of you. When he does, it is hard not to feel depressed, defeated, hopeless and afraid. It is difficult to keep fighting
when you feel like every day you are losing ground and the end is inevitably coming. The thing is the end is coming for all of us. Sure it might be easier some days to give up and just let it happen. However, even with all I can’t do. All the things I grieve the loss of. There is still so much I have, and so many beautiful things I don’t want to miss out on.

I am blessed with a wonderful family. A husband who would give me the world in a heartbeat if he could. I live in a home with a view of breathtaking sunrises. I have friends that are there for me, in person and in spirit. I have witnessed a child enter this world and take her first breath. I have sat at the bedside of a friend singing of angels as he prepared to meet them. I’ve watched kids mature into adulthood and become amazing parents. I’ve experienced the kindness of strangers. I’ve seen God at work around me. These, and many more, are things that I can be a part of whether I am an athlete or an invalid, and I don’t want to miss any of it. So I will keep fighting the beast. Every day. Maybe someday I’ll tame him. Maybe I’ll still be facing off with him 50 years from now. We’ll just have to take it a day at a time and see what happens.