So my fiancee and sister in law thinks what I have written to the pastor was offensive and to me, I felt like I was honest in what was presented at the time was an insult to me you'll see why. This happened possibly four months ago.
"Dear pastor zak,
I have been meaning to write to you some time ago during the early fall season. Your church seemed awkward at first, especially when I came in from a traditional Puerto Rican family that believes in the Catholic church. It took time to break from that different culture and now embracing the idea that church should be fun not just a structural type of condemning others. But before I ramble on as I always do to try to get to my original thought. There are many personalities each individual has. For example you, Pastor Zak and Zak, the pastor I enjoyed but when seeing who Zack who is still growing on the inside has offended me when (probably wasn't intentional) the facial responce when I had told you that I am from Connecticut and teaching my daughter about learning my new autoimmune disease. The look was to me like (I'm glad that its not me), that is what insulted me abit. I get that not everyday but once in awhile. I wanted to share insight of what it is like to be like me to have Mixed Connective Tissue Disease that is so rare not even recognized by the Lupus Foundation when its an overlap of Lupus itself and 4 other autoimmune diseases.
Thats right I have 5 combined into one. I would never wish it on anyone. From my disease, my body is in constant pain of inflammation like someone put me on fire 24/7, shocks on my organs and muscle tissues, touch and sence of feeling of the cold air even ice by hurting me to where my own muscles would go against me pull me back towards my spine into a fetal position while screaming and crying for relief, as by touch it burns and sends electrical responces to my bones and muscular tissue, also as if some placed miniature binder clips on my muscles whereever it pleases, as for breathing it hurts to even breathe as if some is stabbing me or putting my lungs on fire.
I had an image of a web like a spider web to explain the breathing part. Imagine if your respiratory system was the spider web and the spider is your builder and rebuilder. It fights mother nature to survive, it gets hot outside and the sun happens to shine on the web it catches on fire not too badly but just enough for your spider to come out quickly and rebuild what it had lost, next comes the rain it gives relief to your web but at the same time it feels cold in each and every webbing stitch. The spider is confused on what to build and rebuild so your web is damaged and hurt by the breeze from the wind it comes and goes very slowly imagine thats your breathing, your spider slowly comes out trying to fix your web, your vitial web that you need to survive on a daily basis.
See pastor zak everyone of us carries a web to breathe and a spider that is the part of the body that our brain spends signals telling it to fix and rebuild what needs to be done before invaders come. But unfortunately not everyone has a structural strong web and a strong spider to help us live each day instead of resting just so our spider can make us strong.
I want to be normal but the weird me again but I can't I have to find people who are like me who understand pain not be judged by others thinking are they like me, are they better off than me, are they having an exciting adventurous life like normal people do on vacations.
We can't we have to be home and cope with our disease and cry with our spouses if they support and understand us, its always going to be a constant fight at home and out of the house.
I'm sure you have constant battles to face as well but I won't understand them until they are shared just like my insight I have given you.
You are right to say I am glad it is not me but you facial expression is what gave me a small glimpse of what you be as a person not just a pastor.
I hope this gives you a better understanding of what its like to have my disease.
Thank you in advance if you do have a spare 5 minutes to read this.
Sincerely,
Mir" January 29, 2014
I honestly don't feel any offense to it more telling him how I felt with what was presented to me thats all. So whats your input?