Me letting my mind go...read with caution, it may be quite lengthy!

I've posted and posted about my frustration, especially during this most recent decline. I'd be lying if I said I'm not still discouraged about things from time to time. But I need to snap out of it. I need to because it's what I always do. Okay, so I'll admit that I'm not always smiling and optimistic. It's difficult because after doing things during the day, I have to spend a majority of the rest of my day in bed. The more activity I have done in a day, the more time I need to spend in bed. Yes, it's discouraging. Sugarcoating that fact is impossible. But what I do have to say is that I refuse to give in to this. I will get back to a decent baseline. Period. End of story.

I have Mitochondrial Disease. I live with that fact, with the affects of this disease on my already tired body each and every day. People don't understand my disease. They see me and think that I "look just fine". If only people could live in my body for just one day to accurately understand the pain and suffering involved. Now, don't get me wrong, I wouldn't wish this on my worst enemy. I want to make that fact clear. But my point is, Mitochondrial Disease does not define me. I refuse to let it. At times it is very easy for me to become discouraged, to say "Why Me?", to beg God to take this away from me, or to take me away from all of this pain. But I look at others, especially others with Mitochondrial disease, and realize how lucky I truly am. Regardless of the fact that I do have Mito, I am able to walk, I'm able to talk, to hold my friend and cousin's children, to eat (the small amount that I am able), I can breathe on my own. Yes, I'm blessed. There is always someone who has it worse than you do! I've learned that. There are people out there suffering from Cancer, from Alzheimer's, from ALS, all sorts of terrible diseases. Each is their own burden and each is their own cross for their victims and their families to bear. A co-worker of mine has fought ovarian cancer more than five times!! Yes, I didn't mistype that, she's had it more than five times!!! They have now pulled all of her tubes for hydration and what-not. It's only going to be a matter of time before this courageous woman finally finds comfort in the arms of the Lord. And I think about her, about all that she's gone through. The day after my Aleia died, I was very upset..I remember how much of a blur it was. But my co-worker was there. She has the compassion to ask me what was wrong. I told her. She told me she was sorry for my loss. It doesn't seem like a lot, but believe me, it meant the world to me, and it still does. I figure it was about that time that she was beginning a very steady decline and relapse. Shortly after that, she had to leave our workplace and hasn't been back since. Never did she complain. I'm sure there were many horrible days for her, and I'm sure there still are. But I've never met someone who has such a positive attitude and outlook. My prayers for her continue. I can't imagine...and that's exactly what I mean..she has it worse and yet her attitude and outlook is still positive!! What's more, she's dying. I'm not dying now. Someday I will die, but for now I am living and I choose to continue living.

I think of this recent decline...of the difficult times I've experienced, especially in the last few years. My body has declined several times in that time period, and I've also experienced a great deal of loss. I think of a quote, one that I read on my Aleia's funeral program...her older sister is the one who said it.

"Night will always come. It is inevitable. But it never stays."

We all have dark times in our lives. It's a part of being human, it's a part of life. Some have more dark times than others. I've struggled time and time again with ways that I can overcome this without allowing it to damage my spirit. This disease has caused many issues with my body. It has a tendency to cause me to become depressed at times. Only temporarily, thank God. For now. When you combine that with everything else that has been happening, it's not too terribly difficult to understand why I get frustrated, angry, hurt, disturbed, distraught, you name it. As I've said before, I don't wish this on anyone. I do not believe that God is causing my suffering. I've had a lot of time to think about this. Bad things do happen. And the more I've lived, the more I've come to realize that more often than not, they happen to people who are generally good. Which is why I say that God does not cause people's suffering. God does allow it. He could heal people because He is God and He has the power to heal us. But, God does allow good things to come out of horrible situations. I just want to point that out.

Part of being human is learning. I've learned a great deal already in my lifetime and I know that I will continue to learn more and more each and every day. I had a conversation with my ex-fiance's grandma, my adopted grandma tonight. I told her how my friend's husband suddenly died, and how I wanted to attend his funeral. This afternoon I attended one for one of my residents. She commented "You go to a lot of funerals." And it's true, I do. But there's a very interesting, albeit complex reason for this. I'm not afraid of death. Many people are. People in the medical profession often see death as something to be continually fought against. But here's the thing guys, everyone dies. We're born, we die. That's life. Death is a part of life. Just like birth, just like marriage, or any other rite of passage. People are uncomfortable with the ideas of death, grief, and the like. But I'm not. I used to be. However, I've worked in long-term care almost five years. In those five years, I've been honored to have been with many individuals at the last moments of their lives. Words cannot express the depth of these moments. My ultimate goal for my residents is for them to be as happy and comfortable as possible, even though they are dying. I want to do as much as I can to make sure I am able to continue fulfilling my purposes in life. And I'll explain more about that, because what the heck...I can!

I've done a lot of reading and learning from a young man named Mattie Stepanek. He also had Mitochondrial disease (a much more severe form than what I have), and his body succumbed to the disease when he was only 13. If he were still alive now, he would be about the same age as me. He was a peacemaker, poet, and philosopher. He was always focused on having a positive attitude and spreading his message of hope and peace. I want my life to be much like his, although all people have different talents, we all have a sort of obligation to share our gifts and talents with the world for God's purposes. I feel that a part of God's purpose and plan for myself and my life is to comfort those less fortunate. Especially the elderly and disabled. I like to think that by being compassionate and loving toward them is my way of being Jesus for them. It's just as Jesus says in the bible "What ever you do to the least of these, you do to me." It's a beautiful perspective on helping those who are not as fortunate as we are. 

It is my hope and prayer that the next few days will bring more strength. I ask that those who read pray for this as well. Please keep my friend who lost her husband, and my coworker who is nearing the end of her life, in your prayers as well.

Until next time....