The Monster Inside My Head

Depression. It has a strangle hold on me, and it refuses to let go. It is more gripping than being strapped down in bed. It affects more parts of my life than I ever knew was possible. It hits night or day, and it hits hard.

Lately, this ugly Monster has inflicted me with Sleeping Sickness, or at least that's what I call it. I am so utterly fatigued all the time that I cannot complete simple, everyday tasks. I can sleep for 14 hours or so at a time, and still get up exhausted. I am soooo sick and tired of being sick and tired. The Fibromyalsia doesn't help- and is most likely the cause of this extreme fatigue.

I thought the increase in day length due to the changing of seasons to spring would be helpful in coping with my massive depression problem- along with the medicine cabinet of pills- including anti-depressants, but so far I've been mistaken. Perhaps it is unfair to think day lengthening would help when lately (for past several months) it has been rainy and cold predominantly. I know for sure that sitting in the sun and drenching in it's rays is very beneficial to my mindset. I think it helps everybody that way. Still, I can't shake this dark cloak of depression hanging over me like gloom and doom forever.

Yes, recently I have entertained the thought that everyone around me that's been subjected to my myriad of constant complaints of pain and discomfort would be relieved if I would commit the ultimate act, and just permanently end my own pain and suffering. Hara-kiri, if you will. Destroy my own soul. Put me out of misery.

But here's the kicker to that end: I am so fricking depressed that my next thought was that probably nobody would notice my demise. So despondent that I figured I wasn't worth the trouble- even to kill myself. Why bother? Somebody would just have to clean up the mess.

I did, however, pick a rather enlightened place to have my most severe mental breakdown to date: the doctor's office. Not just any doctor- but my pain specialist doctor- apropos, doncha think?

Dr. Braun is a very competent and affable doctor. He has a rough row to hoe- listening to people complain about pain all day. I wouldn't want his job- even on a good day. I was in his office for the third set of painful (both) knee (into the joint) injections in as many weeks. The nurse was the first to notice the drastic change in my demeanor, and made note of it on my chart. She wrote that I was extremely calm and sad, but determined. She had no way of knowing the total hysterical breakdown that was waiting for Dr. Braun behind the exam room doors. The tears started to flow, and couldn't be stopped.

I babbled a lot of problems that I am currently experiencing, and Dr. Braun was trying to get the injections ready for the procedure. I usually steel myself for the coming painful injections- but this time I just didn't care, and I cried out in pain as the medicine went into the knee joints. This startled Dr. Braun, as I was usually quite quiet during this painful procedure. He immediately apologised for hurting me- which I quickly assured him it was not his fault the darn injections hurt so bad. He tried to comfort me, in the hope I could quickly regain my composure, but when that didn't happen, he sent the nurse back into the room.

The nurse helped me up and out of the room, and directed me to the in-house phone so I could call the crisis line at the psyche ward. She stood by me until she witnessed me make the call to the crisis number that she had provided. By this time, I had regained enough of my dignity and composure to realize that I didn't want the little men in white coats coming out to pick me up and throw me in the padded room with a straight jacket on. Besides, It was Riley's birthday and I didn't want to miss it.

I mustered all the sanity I could, and calmed the tremble in my voice to ask the crisis line to transfer me to the counseling side so I could make an appointment, which they did. I managed to make the appointment and kept it.

This is at least the second week of this horrible, terrible Sleeping Sickness. I am so physically tired that is difficult to get enough strength to write. After waking, it is all I can do to stay awake- even with massive amounts of coffee. I am confined to the will of the body in depression, and that means total submission. Not enough strength to lift an arm or finger, if that is the will of depression. Not strong enough to keep small eyelids open for very long. I have to take breaks during the morning shower. It's worse than being handicapped- for there is nothing virtually wrong with me- physically.

It's all the Monster in my head. Pray for me.

Sheila

Autism & The Family Shun

Riley is my middle son, and he is so special that he is beyond precious. He is also severely and profoundly autistic. I love him tremendously, and his love is truly unconditional. Riley is non-verbal, and he usually behaves like a 4 year old, in most aspects. He is non-violent, and is extremely affectionate for being 'autistic'. Riley's birthday is April 8, and Riley turned 12 years old on Tuesday.

My mother's birthday was also on April 8, but she recently passed away four days after my birthday on October 12, 2007. My father passed away 2 months before Riley was born, 12 years ago. So I was very pregnant with Riley when my father died.

I don't know how dysfunctional your family is, but ever since the birth of Riley, my siblings (family) have denied any type of con-celebration with Riley and my mom. Somehow, the birth of Riley got intricately linked to the death of my father, instead of the joy of a grandchild sharing the birthday of a beloved grandmother. My brothers and sisters always made up some lame excuse why our family could not celebrate Riley and Grandma's birthday together.

The first birthday with Riley my siblings said it was too close to dad's death, and that it would diminish Mom's birthday. Huh?? Every year it was some incredulously lame excuse- but they remained separate celebrations until the end. One year, when Riley turned 5, my sister had a birthday party for both Mom and Riley, considering that she knew it was Riley's birthday, and she invited him. I guess I just assumed she would have something for Riley.

But Oh no. She told me when we arrived at her house that there weren't going to be any presents exchanged, because Mom only wanted cards. I thought that was extremely strange and rude of her. What parent in their right mind would have a birthday party involving a 5 year old and NOT have presents??!! The only one that received any presents was Mom. This hurt Riley's feelings terribly- he didn't even receive any cards.

My sister also prepared dinner, as there were a lot of relatives at her house, and some from out of town, and some from out-of-state. The food she had prepared were all items that Riley disliked, and would not eat, and she knew this. There wasn't anything in her house that Riley could drink- he doesn't like soda pop. Riley eats kid foods- like hot dogs, chicken nuggets and pizza-etc. Do you think it would have killed my sister to have a package of hot dogs and some juice on hand for Riley?

Apparently. She actually got angry at me for asking her to provide these things for Riley, and yelled at me for not bringing anything for him to eat or drink. I was shocked at her ugly behavior towards my special needs son, who turned 5 years old that day. Then she accused ME of trying to ruin my Mom's birthday!

This was only the tip of the ice berg for my sister Patty's ugly and hateful behavior towards Riley, and my family.

If I had it to do all over again, I never would have allowed my sisters to treat Riley so badly on Mom and Riley's shared birthday. For the past 11 years they shunned Riley and the rest of my family. Not just his birthday, either. Patty branched out to envelope all holidays and family get together's to humiliate, ridicule and degrade all things Riley, so that now most of my relatives believe Patty's version of Riley as a wanton spoiled brat(which he is not), instead of the truth which is I cannot control Riley's autism like a light switch. He has some peculiar and strange mannerisms, but he is harmless- and no more annoying than a lot of other 'normal' kids behavior. You'd think my family would understand, and be the most supportive and tolerant. Think again.

Last year, April 8Th was a very special day indeed. Besides being Riley and Mom's birthday, it was also Easter, and my Mom turned 90- a major milestone for her. So my siblings began to plan a big shin dig nearly a year in advance. They made sure that I didn't find out about their celebration plans-so naturally I wasn't involved in any thoughts or input.

Mom's health had been rapidly declining for the past couple of years, so I knew there wouldn't be too many more opportunities to celebrate Riley's birthday with hers.

The big shin dig went on at the nursing home where mom lived. It had some truly tasteless moments- like the cake design was black with grey writing on a tombstone that said "Happy 90Th Birthday Helen", followed by a stream of black balloons. The party certainly got some odd looks from the elderly residents that wandered by the rec room, and I heard more than one resident ask "Who died, and why are they celebrating?"

But the real icing on the proverbial cake came when there was absolutely no mention of Riley's Birthday anywhere. My brother took out a full page ad in the newspaper- and couldn't "afford" to include the word "Riley" in the ad. My sister Patty wrote a tribute that included the Bolshevik's War, and I'm not kidding, actually had Riley's birthday mentioned as a foot note under Mom's favorite color, which was green. Once again, all the family that had been invited poured gifts and cards over Grandma, and no one remembered to give Riley a single thing during the celebration. My other sister, Marylin, got Riley a small present, but only gave it to Riley after every one had left, and we were cleaning up.

Oh, I almost forgot- my 'family' bought two extra cakes- one full cake went to the nursing home staff, and the other cake went to my brother for no other reason than his birthday was 2 months away. Sad.

I figured I would wait and see how everyone would handle April 8Th this year. It so happened that my brothers and sisters got a conference room so we could divide all the remaining nick knacks, pictures and personal papers from our parents the weekend before April 8Th. That went swimmingly.

My sisters have this bad habit of asking if they should throw trash away- and then exclaim "No, wait- give it to Sheila". Every time I would approach a box of items to rummage through, Patty would appear at one elbow, and Marlyn would appear at the other elbow, so they could "monitor' what items I was looking at. Their behavior reminded me of all the furniture and other items that Mom gave me when she was alive, would arrive at my house dismantled and torn apart, and usually broken when it had been whole when Mom gave it to me.

Apparently, my sisters thought whatever Mom gave me must have some hidden treasure in it- and I shouldn't be allowed to receive it- I don't know. All I know is that I complained to Mom when this happened repeatedly with every item Mom designated for me to have- and she was not aware that Patty and Marilyn were doing this strip search of Mom's antique's that I received.

Going through all the old pictures of Mom and Dad brought tears to my eyes from happy memories, and the thought of how much I missed both my parents. It was a grim reminder of my own mortality, as my 3 sons accompanied me to the hotel conference room to sort through my parent's belongings.

Danny, my youngest son, had a soccer game to go to, and my brother-in-law agreed to take him to the game so I could stay and keep sorting. Riley was bored out of his gourd, and he had nothing to keep him occupied in the hotel conference room. So I asked Dave, Marilyn's husband, if he wouldn't mind taking Riley along- just for the car ride to break the monotony.

Mon Dieu! You'd have thought I asked Dave to hold toxic waste with bare hands! No, no. no- he couldn't handle taking Riley in the car! My mouth fell open with disbelief. Riley was not a wild animal that escaped from the zoo! He's non-verbal, for gosh sakes! He can't talk back.

Let me remind you, gentle readers, that these are the very same relatives that have never offered to give ME a break from Riley's constant care, and the very same relatives that talk behind my back about how easy it must be for me to take care of my 3 sons without any help from any body. Not to mention that Riley is nearly 12 years old- and never hurt anybody- including his rough-and-tumble brothers. Not to mention that for the past 6 years Riley has received Supported Community Living from different agencies that send out workers once or twice a week-to give our family a couple of hours break from Riley- and these people take Riley out to malls, restaurants and parks- AND THEY ARE TOTAL STRANGERS! (at first)!! They have all grown to love Riley, buy him birthday and Christmas presents, and invite Riley to play with their own children, among many other routine tasks.

But, no-it's too much for Dave to give Riley a ride in his car.

To make a long story short (kinda moot point, doncha think?:), My family not only refuses normal contact with Riley, shun him mostly, but they also managed to go all weekend without a single mention of Riley's birthday.

They arranged to have a mass said in memoriam for Mom, and Dave graciously took us all out for brunch after mass- which was great.

But it was only after mass, brunch, and soccer games did Marilyn and Dave slip a birthday present to Riley on their way out of town. Thanks to Marilyn and Dave-Riley loves his Veggie Tales DVD Collection.

BTW- Marilyn's daughter also had a child on Marilyn's Birthday! You'd think that they had found the 8Th wonder in the world- that such an occurrence was rare. They have a huge con celebration with both Marilyn and her granddaughter. Imagine that!

I don't understand why it has to be such a secret to wish a child "Happy Birthday". I cannot wrap my head around why MY family has to shun Riley. I do know it is fairly common for the extended families of autistic children to shun the autistic family, and leave them out of family get togethers. I guess I just never fathomed it would/could be MY FAMILY.

Needless to say, I took this April 8Th to nearly have a total mental breakdown. It hit me pretty hard that Mom was not ever going to get to celebrate her birthday with Riley. I don't get a "redo". I blame myself for not doing something about their shared birthday to celebrate in the past 11 years. And I feel guilty for letting my siblings be so ugly to Riley for the past 11 years- so now it is just routine for them to shun and ignore their special nephew.

It is their loss. Riley is my Birthday Boy. He blew out all the candles this year! I hope his wish comes true.

Mom