I’ve written before about how grateful I am for finding someone or a group of someones who can understand what you are going through – community. It hasn’t changed. Recently I put a question to the ADEM group on “Ben’s Friends,” a website dedicated to connecting people with rare diseases, including ADEM, about helping friends understand.
The response from a man in his 50’s was just what I needed to hear. He’s been through what my little Greta is going through, but as an adult, he can express his needs a little more reasonably and in the typical “adult” manner than Greta can right now. His advice helped me a lot. His kind words to Greta were that she had nothing to be embarrassed about. All she had to do was ask people to slow down a little or go over something again, it’s not a crime to ask.
I thanked him and told him that even Karl and I can forget at times that Greta needs a little extra help here and there, because everything looks so normal on the outside. He wrote back that his wife has the same ordeal. She’s so grateful to have her husband back after he had been through and had to relearn to do that sometimes it’s easy to forget that he still struggles sometimes.
When everything looks “normal” on the outside. It’s easy to forget. It’s easy to forget that there are still things on the inside that trouble us and make us need to ask for a little bit of extra help. The problem is, we get tunnel vision. We see “normal” so much that we aren’t always prepared for the after effects of ADEM to rear their ugly head and we have to slow the train down and adjust. It catches us off guard. Because we are human and it is easy to forget.
Praying that when I’m jarred back to the reality of ADEM and the fact that life will never be “normal” again; that it doesn’t take me quite so long to adjust each time. Perhaps there are others in my community, my circle of friends that also need me to pay attention to when they need a little extra help. There are many out there that need us to be prepared for anything – not easy to forget.
Filed under ADEM, Community
I’m the one.
Odds are one in a million that you will have an allergic reaction to this medication. I then have to inform the doctor, yes, but I’m the one. I tried to convince a doctor once that I was a medical freak. She would hear nothing of it. She explained that you had to have at least three things going on at the same time. I did and I told her so. She didn’t have much to say after that.
One of my gastro doctors was the first to accept my self-awareness. Oh yeah, you’re the weird one. I proved it true under his care. I was the one in a million that wouldn’t properly metabolize the medication we were trying for my Crohn’s Disease.
It’s not easy being the one. Currently, it rather hurts. Only one in a million will have an adverse outcome from a colonoscopy. Again, I am the one. There are days I wonder what it would be like to be normal. God give me strength.
I remember those junior high days where a few girls gathered secretively to share the cigarettes that had been obtained. They were my friends. They were all doing it. But just because they were all trying a puff didn’t mean it was right or normal. I said no. It would happen again and I would say no again. This time, however, another friend was strengthened to say no as well. She found her backbone.
I wish I could say that in every test that came my way, I always did the right thing and that I have no regrets, but that would be a lie. I’ve made mistakes just like everyone else. But there were also many times that I did stand up and say, this is not for me!
Today we have so many programs to discourage children from starting the addicting habit of smoking that the message is clearly out there: smoking is not normal. We have political ads on tv asking voters to extend the smoke free laws to bars, because employees there have a right to breathe clean air too!
When I was a kid, my mom laid down the law, we were not to watch a tv show about a witch. No questions asked. Today there are so many tv shows, movies, books on required reading lists at school and much more that promote witchcraft. Does it change anything? Nope. My mom still won’t watch a tv show about a witch. Apparently what has become normal all around her didn’t change her standards or beliefs.
What about us? Maybe your issue isn’t witchcraft. Maybe it is alcohol or try before you buy plans of living together before marriage. Has society’s sensually saturated offerings that seem so normal changed your mind? Is what our friends, family or neighbors perceive as “normal” now our guidelines for the choices we make on a day to day basis?
Where do you get your values from? Is it a cultural heritage? Perhaps it is a religion or faith based set of values. Maybe your values are based on a certain set of political ideals. Wherever you get your values from, be true to them.
As a disciple of Jesus Christ, my values come from His life and teachings through His Word, the Bible. I pray that everyday the decisions I make are guided by the Bible and not what society sees as the new normal. Will I stand out? Will I be different? That’s a no-brainer. Yes, I’ll stand out, but that’s okay because that’s what Jesus asks me to do.