Over the past few weeks I have thought and thought. More than I think is healthy at times. These thoughts, they come to me when I don't want them to, when I don't want to deal with any part of the situation which can not escape my brain. No matter how hard I try to shove it away, nothing works. This disease demands to be heard, seen, felt and endured. I never asked for this life. It is simply the life that has been given to me. Before I get too far into this, I don't want you to think that I am entirely thinking negatively. With that being said, my disease is indeed progressing and I have a lot of thoughts, feelings, that should be down on paper, or in this case, in a blog entry. It's not that my thoughts are desired to be shared with the world, so much as to make my "little mark on the world" so to speak.
I re-read an article on MitoAction http://www.mitoaction.org/blog/syds-story which speaks volumes about how I feel about living with Mito. To understand where I'm getting at, I should start from the beginning. I have never in my life been "normal." As far as I'm concerned, normal is simply a setting on a dryer. I have never had an immune system that could easily fight things off. I never was able to do all of the things the other kids did in phy. ed. Running the mile nearly killed me every time. Truth be told, I was never athletic and had never planned to be. By the time high school rolled around, my ability to run was almost completely gone. Dancing, something I had loved before, became a chore that could easily land me in a wheelchair with an energy crash. By my senior year of high school, the seizures started. My digestive system, which had barely worked well in the first place, was not tolerating food well at all. I spent more time in bed than anywhere else, sleeping sometimes 18 hours in a day on a really bad day. The constant pain and nausea began when I was about 12, and has since never gone away. I have forgotten what it's like now to live without these symptoms. They have literally become a part of my life.
I am a caregiver, at heart and by profession. I constantly put others before myself. My ability to empathize is a great strength and yet a great weakness. Because of my experiences as the patient, I can relate to patients/residents in ways that so few can. I have been on the other side, I've been scared out of my mind, helpless and unable to get out of bed. Sometimes I have been completely unable to communicate. For a very short time, I am trapped in my own body, with thoughts that still work and feelings that scream out inside of me, wanting to be released. I hold so much of my own pain back to ease that of others. And I'm not saying that it's healthy, nor am I saying that it's bad. I really haven't decided how it is. What I do know, is that this disease will eventually take everything from me.
From what it looks like, I will be unable to eat anything by mouth at some point in my disease process. The digestive process is constantly painful from beginning to end, and the nausea has worsened in a very real, very horrible way. My muscles will cease to do what I want them to, and eventually a wheelchair will be needed as well as people to lift me and care for me. I may lose the ability to swallow, to speak, and even to breathe on my own. My ability to love the people I love and who mean the most to me will not completely be taken away, but my ability to express that love and affection could be severely affected. I could essentially become a prisoner in a body that no longer works, no longer is me, and does nothing that I want it to.
How much will I lose? I will lose my identity as caregiver, as a nurse, as a co-worker. What will I gain? That I do not know. I suppose a deeper appreciation for life, for the people I adore and who mean the most to me. It is in that situation I will learn who is truly there for me, who truly has unconditional love and devotion to me as a person, as a family member. Those who will maintain my dignity at my worst moments, hold me while I cry, and ease my passage into the different stages of this disease.
I long for my dreams to be realized. I want to have a family, a loving husband, many children. I want to be that close-knit crazy family everyone thinks is absolutely insane but who all love each other and help each other in times of need. I want to raise my children with all the love I can give them, show them how to be good, kind, and caring people. I dream of the day I hold my newborn baby in my arms, kissing them on the forehead, looking at them and watching them with wonder in my eyes, unconditional and irrational love. I dream of the child with special needs I can someday adopt and provide a loving and stable home for. I dream of the loving, doting husband, partner in crime whom I can tell anything to and get through anything with.
These emotions in me are raw. They shake me to my core. The only thing I have in this world that can make any sense of this mess is God. I know that He will carry me through until this disease has completely had its way and I join Him in everlasting paradise. There, my body will no longer be broken.
As of now, I am a nurse. I am a professional with a great group of co-workers who are my family. Not just the co-workers, but the residents and their families as well. I do not, in any way believe that it is wrong. I feel that it is the way I was meant to work. I truly look forward to going to work most days and can honestly say that I love my job most of the time. I have a very real connection with the elderly, especially patients with Dementia. I remember being medicated, after being in a coma and being so scared. That's how they feel much of the time. That in and of itself was an incredibly humbling experience. Because I know how fragile life is, I love people with everything I have. I hold nothing back. I try to find the good in everyone I meet. My life's purpose is to be Jesus for people. "Whatever you have done to the least of these, my brothers, you did to me." Powerful stuff, isn't it?
Someday all of that will be taken from me. I do not know what the time line is. It could be far too soon, it could also be decades away. I also know that I am not afraid to die. I know that when God is ready to take me, there are reasons for it, and I will be so much happier. This is NOT about death, really. This is about life! Life is precious, far to fleeting, and goes by before you even know. People who you love are taken far too soon with very little reason. I'm saying CHERISH every single moment. Because even the crappy moments in your life are worth something. YOU are worth something.
I do not know who will love me "if I am nothing," just yet. I do know that I have several people who have stepped up and loved me at my very worst. I am confident that I do not go through this disease entirely alone, nor will I. I have a family that loves me and will do anything for me.
So yes, Mitochondrial disease will probably win the war eventually. But that does not mean that I'm not going to put up a fight! I do get tired of fighting, but always find a way to keep going. There will be no exceptions until my body tells me that it has had enough. When God calls me Home, then, and only then, will I succumb completely to the disease and allow it to take my earthly body. My soul, intact as it will be, will go with me and I will no longer have to fight the battle.
So many changes are coming up in my life and I am praying about each of them. Nothing is set in stone. I would like to start working toward some of my dreams very soon. I will make the most of each moment, each day that I am given. And I will not give in.
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