Saturday, September 06, 2014

Exactly My Point

A page member left this comment below my post yesterday and I thought it was thought-provoking and I thought it would give me a chance to clarify some things even though some other AMAZING and MUCH APPRECIATED page members came to my defense. The comment is as follows:

"Couldn't agree more with the Doctor and the heading of your "My Services Are Not Needed " I have to wonder is this about you or your Son Who might I add is the victim of this affliction, although you claim its about Understanding Schizophrenia its really more a case of living with someone looking for sympathy. I wont apologise for my words if they seem a little harsh, However do you really understand ? as you yourself are not a sufferer."

First of all, I know I am not a sufferer. I don't pretend to be. Who I am though is the mother of my one and only child who lives with schizophrenia. My blog begins and ends with my story and my experience with caring for Thomas. Whenever possible I add in his actual experiences but yes, sometimes what I write about is MY experience with HIS symptoms. I think I have a fair and unique perspective that is worthwhile subject matter for a blog and I have countless people who share my same perspective and experience. I won't speak for anyone else here but I will say that I don't write for sympathy, I write to educate others about what it's like to "love someone living with schizophrenia." Those last 5 words are actually on the banner at the top of my page. I write expecting nothing in return other than to be able to open a forum for others to say, "me too" and share their own experience. All of this is done in the hopes that the naysayers about schizophrenia and what it's like to be a caregiver for someone living with it will see that what their preconceived notions are about this illness and those of us who love someone living with it are not the evil pariahs we are made out to be in the press. My aim is to humanize this illness as much as I can from my unique perspective and to hopefully shed light on the many facets of this debilitating illness--debilitating for both sufferer and caregiver-- as we each live with this illness in our own unique ways.

The are countless triumphs, some of which I have written about lately with Thomas as he seems to be having some good times right now, but there are also defeats, too many to count, that we, as caregivers, feel as much, though in different ways than someone living with schizophrenia.

The title to this blog is "Understanding Schizophrenia." I believe I do a pretty decent job at helping people to understand. This blog is not only my story and that of Thomas's but it also, daily, includes at least one thing that educates or helps someone understand the facts of schizophrenia as an illness. What it is not, and obviously not meant to be, a blog written as a first person account, as someone WITH schizophrenia in an attempt to help others understand their exact experience. There are many blogs and pages out there if you are looking for that forum two of which are Dealing with Schizophrenia and Iron WOman. I happily encourage ALL page members to seek out these blogs so that you can get that type of perspective.

Now, to my page member who posted the above comment, I would never expect you to apologize for your thoughts or feelings. I appreciate them and take them into consideration just as I do everyone else's. We are a diverse group of people from many countries and we each have a unique perspective none of which EVER need to be apologized for. What we ALL need is an open forum to share our stories from our own points of view. No apologies.

As for "looking for sympathy" you are half right on that. It is more like I am first and foremost, by sharing my life with all of you, looking to support others by letting them know they are not alone with what they are going through or what they think and feel about what they are going through. If in my efforts to do that people single me out and tell me how sorry they are for something I am dealing with myself at the moment, I welcome their support of me and my journey.

Ultimately I just want to say thank you to that page member for being courageous enough to speak up and share your opinion. As I said, I welcome ALL points of view but I will also try to respond in the hopes that I can help you better understand my mission.

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