Don't Be Afraid

There was something on my mind before I went to sleep last night. It is still on mind this morning. I have extremely wonderful family and friends that have been of great comfort to us both. Yet I noticed something. Sometimes I notice someone reassuring me but at the same time I notice it being done because they think I am afraid or scared. No doubt I am so thankful for these kind words because they really lift me up. Still I don't want anyone to think I am afraid or in fear of this disease. True it is worrisome but I am not scared of what the outcome could be.

What is the outcome? I may never get better, even death. Accepting this has helped me get my mind ready. This disease is not an easy one. It takes its toll fast and the results are often times long lasting. Only a small percentage actually go into remission. True, I am hopeful but I am also not in denial. I try to always be positive. What helps me accomplish that is allowing myself to not look to far ahead just yet. Instead I cherish my small victories.

I know the reality of disease because I witnessed it with my mom. She never got her hopes up but she never lost hope either. Medicine and science can only do so much. I won't spend my time chasing this and that, I will do what I can. In my mind that will take away from me enjoying what I do have right now...my life, family, and friends. Being sick is obviously not the way I want to live. I know its not the way my wife or others want to see me live. I had big plans for the future when I was well. Its ok though. My spirit is at peace.

Cheer me on, stay in my corner, but do not be afraid for me. Help me live the best life I can. No one knows what tomorrow will bring. Will I get worse? It is highly likely. Will I get better? I am hopeful. Still I am glad to be here. This is my opportunity to educate and possibly help others who are dealing with an invisible illness. This disease will surely slow me down. It won't allow me to do what I used to but it won't stop me from being me. I am sick but I am still Jesse Benjamin...Jay...Jay Jay...Jay Bird! Whichever I am known by just know I have a lot of life, love, and laughter left in me.

My worst fear

I am not afraid of much. Not man, not even death. What I fear most is being unwanted. Will I lose my friends because of this disease? There are stories of folks with MG and diseases like mine that were abandoned because they couldn't get around like they used to. Is this going to happen to me. It is a real fear because it does happen. I am no different than anyone else, or am I?

Once, I could do anything. Now i can't. Before all of this I would go anywhere at any time. Not now. It stinks. I have to turn down invitations or break plans because of being to weak to safely get around. Will the invitations dry up? Will everyone automatically assume that I can't and cut us off? I am literally afraid of this. Will I be left at home alone because people fear that I may talk about being sick or that I am not any fun to be around?

I am still Jay, I'm just sick. My personality did not weaken only my body. My goal each day is to be positive but I am human. Doubt and fear cloud my mind constantly. Am I a terrible person for feeling this way? Maybe I am guilty of making someone feel this way in the past! That scares me. We have always worked hard to include as many as we can in our events. Perhaps I forgot someone. I hope I can make it up to them.

Maybe this is one of those downer days. My soul hurts. I don't feel sorry for myself I just feel numb. Why me? Can't anything ever go my way for once? Why must I keep getting knocked down and kicked when I am? Maybe its because I keep getting back up each time. Should I stay down this time? NO I CANNOT DO THAT! It could be that my job is to experience painful situations, make it through, then be able to help others. I wish I knew. My heavenly father promises he will not let us be tested more than we can bear. I believe it. I can bear this even though some days the weight is very heavy. I am very thankful for those who have helped us bear it.  I am grateful for the cards, calls, messages, visits, and loving deeds in our behalf. It is overwhelming and brings me to tears.

My heart is a little more calm now. I know this angst will arise again but I will always reflect on the love I feel from my friends everyday!

Are we really what we eat?

I used to hear that a lot growing up. "You are what you eat!" At one point I actually believed it. I love chicken so much I thought perhaps I would grow feathers and start laying eggs, which would be really weird considering the fact that I love eggs too. One day I just had to ask my mom why people say that. Well one reason was to keep us kids from eating too much candy, the other was because eating what is healthy will keep you healthy and eating  too much of the unhealthy things will make you unhealthy.Simple enough. Oops let me hide the chocolate bar! She had a good point too. I have seen people drink themselves to death due to alcoholism, develop high BP because of eating to much fats and the like, and the pains of diabetes because of diets high in sugar. I have also seen and experienced the good effects from eating a healthy diet.

We live in a society now where the new catch word is organic, non GMO, free range, and the list goes on and on. For good reason we need better food. You look on the back of a box and you can't even recognize the words in the list of ingredients.  Even the stuff that claims fat free or low sodium, substitutes what is supposedly bad with another ingredient that is manufactured. Headlines in papers, "EVERYTHING IS BAD FOR YOU". I had never even head the word organic until I moved away from home. We raised our own chickens for eggs and grew vegetables. What we didn't raise was bought from farmers markets or The Mater Man! Organic stuff was the cow manure that fertilized our gardens! Still we never claimed that put us on any higher level than the kid who ate hot dogs and french fries everyday and sat in the house playing video games. It goes back to my original thought, are we what we eat?

That apparently unhealthy eating kid, grew up with the same habits and has never been sick. Yet the kid who ate healthy and still does as an adult gets sick.. Does being ill automatically mean that you don't eat well?  Does is mean that you didn't eat enough organic or non GMO and so on? Or, that starting now will some how cure you? Its an observation I have made because even before my illness I made great changes to be as healthy as I could be, Junk food and sodas were the first to go. I love ice cream, but I can literally count on both hands, and maybe a few toes, how many times I have eaten it over the past 3-4 years. That was my biggest hurdle. I stopped drinking sodas which i never did much of in the first.  I love to cook anyway so we starting doing that more instead of going out. We never did that much either because its too expensive and I cook way better. I always eat fruits and veggies despite the belief otherwise. I simply added more to my diet. My meals were more balanced and I felt good. The excess weight fell off. To date I have lost 40 pounds and it has stayed off. I increased my activity over the past 2 years in preparation to become a fireman. You can't be an unhealthy recruit. I honed my body into a fine tuned machine. I was the fittest I had been since my twenties. As of June 1, 2014 I have an illness that came out of nowhere. What happened?

Who knows? Does anyone but our heavenly father? No. It just bothered me that as soon as one becomes ill the first hing that happens is folks want to throw everything out of the house. You didn't eat enough of this, or do enough of that. Take this, read these, go here, do that. Could it be that it was going to happen despite the best efforts to do everything right? All of the advice is great because sometimes when one becomes ill, it is good to have that second set of eyes to help him/her. Change is good when it helps overcome illness or cope with it. On the other hand how much of the advice is actually practiced. I have preached advice that I know I did not practice before. I think about that a lot. We have to be careful not to do this. Never make someone feel that their illness is result of not doing something right. The feeling of guilt is already there. We don't always have to figure out a solution. Lets just care for each other. Listen closely, observe, then help. What one needs may not be another thing to read but to know you will always be there. Have fun, laughter is the best medicine. Good company revitalizes. Love is food for the soul. To me this is the only organic thing on this earth.

Love, now I can never get enough of that!