Sunday, August 30, 2015

   Garden of Mazes


    So I am sitting here today just thinking. Really. Thinking. The house is clean. The family has been helping out more. It’s not insanely hot out. I am surprisingly not in much pain though I am on a new short term pain med…  My cats are asleep on my legs. The purring is relaxing. What could I possibly find to write about today?
    And that’s the thing. This is today. The quintessential GOOD day we all wish for. They happen too. Different frequencies for all of us. Some get them weekly, some monthly. Some people get a run of good days in a row! Right now, this is my first in a while. So I am thinking: What do I do on my good day?
    You wouldn’t think this is such a difficult question would you? Get out and have some fun seems to be the obvious answer. And I have done that in the past! Gone on day trips with friends. Like the time we went to Seabreeze! And I had no parking pass back then so by the time we got to the gates I was a drippy, sweaty, out of breath mess who could not feel my legs. Literally. I was walking by rote memory. And sat down at the first chance I got and became that umbrella Nazi for the day moving my chair and then the entire table in an effort to ‘follow the shade’! I did win some of the games we played but went on no rides and couldn’t really enjoy the water park. And I took time to recover. Days.
    So I’ve tried the calm relaxation outing route: Shopping. Bear in mind that strolling a mall looking at stuff, maybe trying things on and stopping for a latte is what is usually portrayed as a ‘girl’s day’ shopping. Yeah. Usually. Not around here apparently because these ladies had agendas. I am surprised they did not have maps! I will out myself here. I am a shopaholic. Yes it exists. It is just like alcoholism and can get waaaaayyyy out of control. I no longer carry credit cards and try very hard to stick to budgets. So I know how to SHOP. I also no longer really enjoy it. I am hard to fit so trying anything on is a hastle. By the end of this trip, we had been in almost every store in this mall; a NEW, BIG mall. And I spent my budget-on a large framed piece of artwork that I then had to lug around. We did stop for lattes twice and I did get to rest when they all tried on clothes at every clothing store on the planet, but they picked out stuff for me which never fit and was a huge energy drain trying to get in and out of. That also cost me time to recover. And no one thinks of the pain that crops up over the next three days or so.
    Then there are the good days we think ‘I’d better get stuff done!’. That little mantra we all want to believe because we all have that huge ball of guilt hiding somewhere inside of us. That mantra is not good. Let me tell you right now it was stuffed into us sometime between birth and age 5 when our moms were so sleep deprived they gave in to the evil elves in their heads and planted these life ruining ideas. Now that we are sick, these evil ideas tell us to use up our good days cleaning or running ourselves ragged getting stuff done we’ve put off because, well, Sjogren’s! I’ve done that and am honestly thinking that now. The family room needs some work. But I also know how much that has cost me in days as well.
    So the last option would seem most logical to most. Relax. Read. Draw. Enjoy nature. Watch a movie. Don’t do anything that will cost you days to recover from. You are enjoying a rare pain free day! Really enjoy it!
    Here’s the thing: All of us with these diseases know all too well that it doesn’t matter. Whatever we choose-we could very well wake up unable to move again tomorrow.

                                          So how would you choose?

Sharilynn Battaglia

Wednesday, August 26, 2015

Who Is Strong?

    What is strength? Society measures strength in terms of big muscles and poundage lifted. And when we set the bar down, even more steel is added or us to hoist. So strength in our society is usually determined by who can lift the most.
    But I think this idea is all wrong. Strength has very little to do with big, sweaty, man muscles and everything to do with the 7-10 pound pinkish gray lump of dense, twisty neurons packed into our brains. Strength is a set of chemicals acting in tandem to create a mindset that cannot be broken down.
    You may ask how I know this. Honestly, It’s not my strength I am writing about. To be honest, life has taken me to the level just below Potato Bug in recent week and I just cannot wait to find out what that actually is! My money is on Rosebug with the weird pincers that go for the ear… Anyway, The strength I am writing about can only be found among those that have no way out. Those with disabilities with no cure, those in chronic pain, and those whose minds are locked under a different code than the rest of us.
    I myself could finish this essay on the merits of my own experiences as a person who has worked with the developmentally disabled population or years and who is also an active member of chronic pain clubs all over the net. But even that is not strength now that I have seen the eyes of those labelled insane by our society.
    Having worked with those who are dually diagnosed-having both a physical disability and a mental diagnosis, I have seen the crisis area in local hospitals before. And I have seen the “psych ward”. But that was a long time ago. So a recent experience in the psych ward brought back memories, and scared the shit out of me. And there was nothing I could do. Nothing. Crisis units are just that, for a crisis. so if your crisis is under control but there’s no where to go, you get to sit in the waiting areas and be approached by new admits. Sometimes, you are graced by a show when the new admit is brought in in restraints kicking and screaming. Yes restraints are still used.
    Then you get interviewed, but no one asks what you mean by certain statements, Only the report of a negative action is read along with some of your ‘crazy talk’ while you were under the influence of a good deal of medication. but you find out soon enough that you don’t get to make the decisions anymore. The doctors do. So youre being admitted to a place that will help you feel better and there will be people who can spend one-on-one time with you to start figuring things out. OK. Its for a little while only. 48 hrs until re-evaluation. no problem. They never tell you these meetings are set up to be of perfect composition to switch to a 60 day stay at the doctor’s command. 60 days was never mentioned,
    So you go up to the ward and it’s quiet and it’s older people and we assume maybe the younger ones are at the gym or laying down.  Better to admit how wrong we were. And then your medicine started for day 1.  And you haven’t seen a doctor yet. And there’s no one to talk to. And no-one your age. But you have to participate in group activities. Yet music group was a bust. She made you play YouTube videos and tell everyone why they were your favorite yet you were not allowed to play the one you wanted. Oh, and you can talk to this other patient and your suitemate was removed to a different suite down the hall-by a bunch of guys…
  So its Monday and you are supposed to have a review. Its not a review, its an assessment and a treatment plan for that day. A med for sleep and a med for psychosis. Where did that come from. I don’t need that. And why can’t I hackey sack in my room?? And my treatment plan is to take the medication? Can I talk to my mom? By day 7 you are on a sleep med and an anti anxiety med but the truth is hidden. The antianxiety med is truly what they said but your sleep med is an antipsychotic. The one they have been trying to get you to take. They figured out a way, But you can come home now and go to an outpatient doctor now.
   You survived 10 in the shoes of a mentally ill patient in a crisis ward. You survived 10 days witnessing things no one should see, thinking things no one should have the exposure to learn to think, second guessing your sanity, then second guessing the truthfulness of everyone around you. You even came through it all seeing the good in everyone there. You made a friend who is busy, but with whom you talk on ‘the outside’.
    You survived and thrived one of the worst environments left in the so-called civilized world. And strength is STILL measured by one’s muscles and not by their character. Unbelievable!

Sharilynn Battaglia


Sunday, August 23, 2015

Life Is A Beach

    When one is in California, one goes to the beach. It’s almost a requirement. And considering I am sick and my mobility is limited (pronounced S*U*C*K*S), relaxing on the beach was so appealing to me! I imagined listening to the waves while wandering slowly at the water line looking for shells and baubles. Until I actually got to the beach that is. Then the fun (pronounced M*A*Y*H*E*M) started.
    I grew up on beaches. We have one here in Rochester on the shore of Lake Ontario. I know-those of you who live on an ocean do not consider lake beaches real beaches. But they are sandy and difficult to walk on so you learn how to compensate. And the waves steal the sand from under your feet when you walk in the water forcing you to learn to be quick or develop really good balancing muscles.
    We also went to Myrtle Beach every year and to Florida a few times when I was in my tweens and early teens. Mom was a water bug like I am and dad was a Navy man, but I don’t think he was as fond of the water as he was of the beach and walking along the waterline looking for treasure. Walking with him solidified my love of doing the same.
    I also spent many years as a lifeguard in my teens. I used to be able to swim 2 miles at a time as well as swim the length of an olympic sized pool with a kicking, screaming, struggling person in tow. Personally, I would drop anyone who started up on me like that. But it’s part of the test. I learned about undertows, safe vs harmful sea life, and could tread water for 30 minutes. In jeans. I don’t think that’s part of the test. I think our instructor hated us.
    The point is that around water and beaches, I am at home. It had all become second nature to me after years of exposure and training. So what happened on vacation was totally unexpected. And it happened immediately. The first beach we hit-the one across from our hotel-took me down. And it was a wimpy beach! (No offense)
    We drove over. I did not want to waste my energy by walking as it was farther than I expected.  We took off down the paved trail to the beach and then we hit the sand. And I figured out very quickly that I no longer have beach legs. It was a scene from Star Wars: Return Of The Jedi. The mini walker hits a rolling pile of logs and suddenly his robot legs start going every which way and down he goes. That was me. And it didn’t get much better. I was a “Drunken Sailor” every time I hit sand.
    By the end of the trip, we visited a real beach. I mean huge waves, gorgeous sand, cliffs down the side…  And all I wanted to do for a bit was wander the water line and look for treasures like I used to with my father. So in I went. And the waves did what waves do and stole the sand out from under my feet. But my body did not do what it was supposed to do. Instead, it completely lost all sense of solid ground and acted as if I was drunk, again, on a tightrope. Even my son decided to very firmly let me know I should get out while I still could.
    I managed to find a few baubles that day. Ones I will turn into jewelry. But by far what I found most was the awareness of how much my body has changed. It is not simply that I have not been to the beach in a long time. We were in California 4 years ago or so. It wasn’t like this. It is simply the disease has taken more since then. Much more. And knowing it vs experiencing it happen in my life are two very different things.
    I went to the beach in California to find shells and sea glass and treasures.
    Instead. I found my truth. I have lost my balance.

Sharilynn Battaglia

Wednesday, August 12, 2015

Say What?

   So as you all know, I just returned from my first vacation since my disease took it’s worst progression yet. And that’s the nature of Autoimmune diseases. They progress. They change. They move. It’s like they have a mind of their own and you never know when or where they will attack next. But that’s not what I am writing about.
    Today I am writing about something that I have heard about. Something I have seen. Something friends have told me about. But something I don’t believe has ever happened to me. Until Monday August 10th to be exact. That something is “Disability-ism”. Or more appropriately; lack of disability-ism. As in being treated differently for being young and looking healthy and using an assistive device or parking permit anyway.
    Here is what happened. On the way home from San Francisco we got to the airport at approximately 10:00am for an 11:00am flight. Security you know. Can take forever. There were mobs of people there but in different areas of the airport. Our checkpoint was crowded but moving well. The main line was taking about 30 minutes.
    I approached the first guard and gave her my boarding pass and my ID. She looked at both and also at my cane and directed me away from my family. Par for the trip. The next agent directed me back towards them to an agent ahead of three lanes; one with no activity, one with the circular scanner and few people, and one with the rest of my family and the snaking line of passengers. This agent-I’ll admit not my first choice of words-directed me all the way back to the original line that was now about 25 passengers longer than when my family and I first approached.
    All I could manage to say was “What?”. He also said “What?”. I stated that I could just not stand that long. As these words left my mouth, an older couple was being directed to the line where their was no passengers at all. The woman was leaning heavily on her cane. Back to my reality where the agent decided to look me square in the eye and say, “Well, if you can’t stand, you should have gotten a wheelchair.”.
How many of you think I:
 A) smacked him with my cane?
 B) caused a scene and got taken to a private room?
 C) got myself arrested and had a nice chat with the air marshall the entire trip back to  
 D) withered him with my best Sicilian “Mama” look causing him to get a supervisor?

To some extent you are probably all right. Either way, I still ended up getting through security with a personal escort after my entire family who had absolutely no idea how that could even happen. I could barely walk that day. I am disabled after all. I even had my cane and was using it! How could someone in so much pain be treated so horribly?
    This is how: My disease is invisible. I have all my arms and legs, toes and fingers. I was wearing make up-and I am damn good with make up! I try really hard to look nice in public. Doesn’t everyone? So why are we judged for looking nice in public unless we are so obviously disabled that no one would dare question us? Am I wrong for pushing myself to walk when I can and use the cane only when I need it? (Which is more and more now.) And who gets to decide if I am wrong? Me? My family? TSA?
    I know a beautiful person-both in looks and in spirit. She has MS. She uses a wheelchair. She has no choice. But I believe if she could go back to that point in her life when she had a choice, she would not choose to use one to get through the airport in San Francisco if she didn’t need to.
    I won’t either.

Sharilynn Battaglia

Tuesday, August 4, 2015

Paradise Dreams

    So I am going on vacation. Today. Like soon. I am going to San Francisco. I am flying. i am beachcombing. I am whale watching, baseball gaming, and Alcatrazing. I am streetcar riding. I am sight seeing. I am photographing, tasting, laughing, and enjoying. Well, that’s how I see it in my head anyway.
    You see, this trip has been planned since before my most recent ‘coming  out’ happened. Before I broke my back. So we discussed things I could do then. But as the saying goes: That was then, This is now. And I am much worse than I was 2012. And this is causing me a huge pile of anxiety-if you get my reference.
    I am very tall. Airplane rides are  not ever fun for me. Even when the person in front of me does not recline, my knees are jammed against their seat back and I feel it when they stretch. Now, I am swollen, stiff, sore and have a back injury. Yet I cannot fidget in my seat to relieve the pressure and pain I may feel. And everyone knows how easy it is for those of us with balance issues to wander the aisle of a moving airplane! Without face planting I mean!
    Then there’s the boats. And the waves. I’ve been told the Pacific is much choppier than the Atlantic. I’ve been whale watching on the Atlantic several times. Way back when I was well. I was awesome! Humpbacks and Right whales! But even then when a wave hit staying upright was not easy. And I didn’t even drink.
    Then there’s the trip I took when Josh was a baby and the waves were cresting over the bow drenching me head to toe (I did an absolutely perfect ‘mommy-Armadillo roll’ around josh and he stayed warm, dry and asleep!); I remember that even sitting hurt then due to the “back of the bus” effect of being tossed into the air then crashing back down onto the seat.         
    Now we have a scheduled Pacific Ocean trip. And it’s important to me. I want to scatter the remaining of my father’s ashes in the Pacific Ocean. That trip with the waves and josh I mentioned? We went as a family and scattered his ashes in the Atlantic off of Cape Cod. Each of us as children also kept some to put in a place special to us. I have waited nearly 19 years to do this. But I am injured.
    This disease and the subsequent broken bones it has caused-let’s face it,chemo meds for years, immunosuppressants for decades, will do a number on the strength and integrity of the skeleton that is supposed to support you for a lifetime-have taken the confidence I used to have in the fact that I could get through vacations with my family. I used to be fine years ago. Then I was just tired. Then I had to rest between activities. Then I hit the vacation when heat finally forced me to choose between my family and an activity or the hotel and rest. After that, I learned I had to choose rest. That was 5 years ago and I wasn’t broken.
    So I am going on vacation today. Soon. Really soon. And everything we planned as a family might end up just being nothing but a dream for me.

Sharilynn Battaglia