Day 19 – Dear Diary

Dear diary,

It is definitely spring in the Rockies.  The days start out sunny and then by 2:00 or 3:00 pm the weather changes and the thunderstorms rolling in.  I have not been able to take my walks in the afternoons.  God forbid if I got up and walked in the morning instead.  Such a creature of habit.  My daughter, M, is very much like that and its part of the autism.  The past few days she has been an emotional mess.  We kept asking her what change, what was it that has her in this tailspin. She kept saying “nothing” or her favorite response “I don’t know”.  My husband and I knew there was something.  Maybe it was because today was the last day of school for the summer, or maybe it was because we have enrolled her into summer school.  We kept asking and she kept saying her typical responses.  Finally today, the reason came to us in an email.  Her favorite teacher is leaving her school next year.  Something that wasn’t happening for about 3 months can get her worked up and we have to talk her off the ledge.

I was once asked what was it like having an autistic daughter.  I thought that she meant, was it harder than normal.  I proceeded to tell her that having M in my life has been an amazing gift and she just requires a little bit of extra patience.  The lady said to me “No, I didn’t mean how was it  to have an  autistic child. I meant how was it to know that you made a broken child”  I was shocked and at first couldn’t speak.  I remembered that I began to shake and  it was the first time in my life I actually wanted to physically hurt someone.

I wasn’t sure at first if I was angrier about she implying that I had control over the situation and I couldn’t fix her, or chose not to fix her.  Or was I angrier that she said my child was broken because she was autistic.  I finally took a lot of deep breaths and I asked her “why would you ever think my child is broken? ” She said that she always heard that autistic children were more difficult than typical children (we use typical in our house instead of normal.  Because who is normal anyways) and that they could show their love to others. She said as a mother that would destroy me.  I began to slowly explain to this narrow-minded person that M is very loving.  She loves to run to people and give them the biggest hug.  She has this amazing ability to know exactly how mommy is feeling every day.  Sometimes, M would come home from school and take one look at me, and ask “mommy what is wrong?”  I didn’t even speak a single word but she just knew.  M is very attuned to others emotions and is always making sure others are ok before she takes care of herself. I was telling this person all this and much more.  I couldn’t speak telling her how M was sure to make people laugh as she seems to be leading a life to have her end up on stage telling knock-knock joke.  I told her how M will make sure her little brother has the last piece of gum or candy because she wants to make sure he was happy.  I told this person of how M writes letters all the time to the special people in her life to let them know she loves them.  Ending my angry message to this person, I told her to take her blindfolds off and stop categorizing people  into this mold she believes is accurate.

You are probably asking yourself why am I telling this heartbreaking story of this closed-minded person.  It is because living with chronic pain, or for that matter chronic anything, that give others who don’t know us from Adam, an opportunity to form an opinion before having all the facts.  Judgement is something I too often have seen with my chronic pain, with my daughter being autistic and even seen it with my husband’s position as a police officer.

What exactly gives people the right to comment on our life before collecting all the facts? Is it having a disease, a syndrome, having a psychological disorder, or a different lifestyle open a  door that allows others to judge us? I don’t believe anything that goes on in our personal life should give someone who opportunity to critique my life.  Building strong skin can help, but I think it is all about educating others.  Educating them to learn the truth about chronic pain or anything else that is out there, could really help society and misinformed people.  I believe letting others know what it is truly like to live day-to-day in pain would be an eye opener to many people.  Those 100 million people who live with chronic pain won’t have to feel any amount of shame, or pity, or guilt, or any emotion that they do feel that others can cast on them.

The next time someone jumps to a conclusion about what its like living with chronic pain, I need to take a step back and realize that this person is just guessing.  Educate that person and maybe the world of guilt and the world of guessing will become smaller.

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