MS Life

Well here we are in the New Year!  Happy 2011 to all of you and I sincerely hope that you face it with hope and with the belief in possibilities.

So let’s talk about possibilities.  I already have a whopper of one.  I love where I live and my home of 3 years.  Unfortunately, although we knew that it could happen at any time (possibility), we have been recalled back to a state where I wasn’t very happy.  This was presented to me the other day and ruined my celebrating the New Year.  I know that it sounds trivial and petty, but did you know that moving is the second most traumatic event you can go through outside of a death in the family?  It changes everything except your core being.

For the last few days I have had a terrible cold with a sore throat a gift from my visiting son, poor baby.   Add to this the ‘moving’ news and then add the launch of the MS Fundraiser.  Okay so I have going two negative things and one positive.  I have to admit that I have been very focused on the negatives which make me feel disabled and you know I hate that. 

I can do something about the cold.  Rest, plenty of fluids and blah blah.  There is nothing I can do about the move.  The MS Launch?  Well I had something to do about it, but now that it’s running, it pretty much takes care of itself, at least for my end of things.  I think it’s the very quick fluctuations of changes that are having an impact on me as I sit back and watch events happening all around me.  One gets used to a solid foundation and then to have it ripped out from underneath you makes you feel unstable again.  Yes, I guess it’s the move that truly has me upset although the sore throat doesn’t help but I know this will pass.  The move is looming in front of me and there are things to do to facilitate the move which I would rather not do.

My sadness over all of this is the sense of ‘home’ that I’ve longed for my entire life having been brought up in an orphanage.  Yes, I know the platitudes of ‘home being where the heart is’ etc.  But come on–in the real world, you can listen to all the practical advice from your friends and it goes in one ear and out the other because it’s the heart that hurts.  No one is listening to the heart just the physical stuff.

I do want to turn this around emotionally.  I’m not quite sure how.  Perhaps all the things I need to do will at least distract me from my real issues about this move.  Then again, perhaps it will focus me more on the negatives.  We will have to see as the weeks roll by.  The move must be done by September, so there is a house to sell and another house to buy.  Wanting to get off the topic now, I am returning back to “possibilities”. 

MS has changed my capabilities in believing in the possibilities.  I have to work hard at it whereas before, it was a natural and easy thing for me.  You along with me have to realize that with the word “possibilities”, there are good things that may happen and there are bad things.  We need to internalize the word.  Instead of thinking of it as events that affect us.  We need to concentrate on our reactions to these events and form our own reactive possibilities to these.  So in internalizing the word “possibilities”, we in turn need to encapsulate it in our minds, transfer it to our hearts, then process it back to our minds and then allow it to show in public. 

Here’s what I mean.  Okay, so I heard some bad news.  It’s in my head now and it hurts me.  That’s my heart getting involved.  I have to work with the easing of pain in my heart as a reaction to this in order to get it straight in my head.  Once I do this, then I can go about tending to business without everyone around me worrying about me because I seem so sad.  Yes, they will still know that I am sad, but they will understand that I am dealing with it as best as I can because I’m tending to all the details of the move.

Is this affecting my MS?  I really can’t say right now because I already have been on a downhill slide with it these past few weeks.  No.  I am not calling my doctor because he will put me in the hospital on IV prednisone and I don’t much feel like going back to the hospital when I just got out of it.  Putting me in the hospital will also delay the process of my learning how to cope with this, and already there is a small twinkling of hope and ideas that are starting to pop up.

I love my house but it doesn’t love me.  It multi-level and we’ve had to put in a very expensive stair lift in order for me to go to bed at night.  The first floor of the house is also multi-level.  You have to go up and down two or three steps just to go from one room to another.  It was an impractical buy in the first place, but my heart overtook my logic when I saw the house and I wanted it no matter what.  LOL.  So here is a good thing.  When we move, I can find a rancher to move into. 

I’ve done a lot of good things here for the community and I have been worrying about what will happen to my projects.  Surely I can find someone to take over these projects and keep them alive?  I hope. I have complained that I don’t have the strength to start over again with instituting these very same projects in another location.  Who am I kidding?  I thrive on mountains to climb because I know there is a very rewarding summit.  I can do this and it has nothing to do with strength or energy.  It has everything to do with “I know I can do this because I WILL do this.”

It’s a matter of enabling myself by thinking of myself not as a disabled person, but an enabled person who has to do things differently.  I’ve done that here, why not there?  It doesn’t matter how old I am, what strength I have, or where I am at in my disease.  There are other ways of getting things done if you look for them.   So you see in the very act of typing this blog, things are looking up already, because I need to scold myself and tell myself, what is this blog about?  Yes, you got it.  It’s about enabling ourselves.  So I have to practice what I preach by doing what I preach.

Over the next few months, we will see how all this turns out.  Meanwhile, please don’t forget about the MS Fundraiser and the link gives you a good idea about how it all came about.

Happy New Year and please sign my guest book.

I woke up with my brains banging against the side of my skull.  Ugh.  I hate it when I wake up with a pounding headache.  I played a couple of games and it doesn’t look like it’s going to be a good cognitive day, so I’ll do physical things instead.

My youngest son is coming home for Christmas and will arrive on Wednesday.  He’s never been to this house.  He left just before we purchased it, so it’s been three years since he’s been home.  We’re proud of him trying to make a living out in Minnesota, but we know he is struggling.  Christmas will give us an opportunity to help him out because he would never come right out and ask us for help.

My other two children who are older, are busy with their lives and unfortunately doesn’t include me.  It’s a long story but I’m out of their loop.  I have grandchildren that I’ve met a couple of times when they were little, but now they’re practically in their teens.  I don’t even have pictures of them. 

The holidays are a struggle for me not only because of separation of family between my children and I, but because of my own upbringing in an orphanage in Chicago.  I had parents who left each other and left us with the youngest of four girls only three months old.  My oldest sister later died of a brain tumor and I was left as the oldest of the other two.  But like I said, this is another story and in fact, another book, perhaps even longer than a book!  It’s very complicated as most family situations are.  So Christmas is a huge downer around here.

Does it impact my MS?  I don’t really know.  How can you tell the difference between the emotional stress and the physical stress?  At this point in my MS, I don’t think my last relapse ever left.  There is no longer a distinction between good periods and bad periods.  It is now good days and bad days, and take that to good hours and bad hours.

Maybe this headache is making me feel down today.  I’ve barely been up several hours and it 8:00 a.m., and I already feel down.  So I need to do something about this, but at the moment, I’m not sure what.  So I came here to you to talk about it.  This is not the intention of this site, don’t get me wrong.  I want this site to make you feel enabled and enlightened by the real experiences of the day-to-day life of a person with MS.  However, you also need to see how down I can get in order to see how I lift myself up.  So maybe by the end of the day, I may come back with a whole new attitude.  Maybe. 

There are times, I have to admit, that my mantra does little to help me.  These are the times where all I want to do is crawl back into bed and hide.  The one thing I’m proud of doing is that I seldom do this.  I stay up and deal with it.  That in and of itself is a good thing.  I’m afraid that if I give in to it and crawl into bed, it will be weeks before I’m able to function again.  I don’t want to lose that time.  After all, I almost lost the time given to me with my last surgery, permanently.  One never knows when it’s time to take that last step to heaven I hope.

This is just a short message to let you know that I’m feeling down and I’m not sure yet what I’ll do about it.  Hopefully later today, I will get back to you and make me and you feel better about it.  Happy Holidays.

I feel as though as we go along, I will be repeating myself over and over again. I got to thinking how I could I circumvent this when I realized; it is the nature of this disease to keep repeating itself. Day in and day out there is no break. There are differences in degree but the anomalies that one develops over time proceed to get worse by degree. So for today I decided that I would talk about a more positive aspect of Multiple Sclerosis. “What?” I can hear you already. Yes! This is where I continue to talk about enabling ourselves in different ways to live a life that is full, productive and happy. I would like to tell you one way I’ve done this in the recent past. Actually, it was by pure accident that I found an outlet that has made me tremendously happy.

I am a composer, musician and lyricist in that order. I also write poetry and I plan on publishing this blog as a book for those seeking a real day-to-day resource of how one copes with Multiple Sclerosis. It is extremely easy for those who are shut in as I am, for the most part, in one’s house, to become depressed. To climb the ceiling with cabin fever until you know every nook and cranny where spiders hang out. This is the case with me.

I am an extrovert and thrive on the company of people, yet on the other hand, the last thing I want around me is people when I am pursuing one of my creative endeavors. For me, it is necessary to be alone. Another reason for this is that cognitively, I become overwhelmed if there is too much activity around me as I try to concentrate. It becomes an impossible task. I even find it difficult to work if there is too much clutter around me. It breaks my concentration and I just can’t move on until I clear things away.

Most people these days are familiar with the internet. I have spent an enormous time on it looking for games, information, chat rooms, crafts, and most importantly, resources for my poetry, writings and music. It’s like this for me. Once I get a piece done, I become very pleased with myself and I want to share it with someone else and see what they think. I don’t live alone. I have two dogs and a spouse. But they’ve heard it all before in one form or another and I already know what they think. What I needed and wanted was feedback from the outside world. It’s important to be acknowledged as a person who claims that their two feet trod the planet as all the rest. When you are a shut-in most people don’t know what you’re up to any more. I have fought this in different ways and I’m about to tell you one way.

A few years ago, I found a web site where, for a fee, I could upload some of my music. I had checked out many different sites, but many of them seemed avant-garde and the responses were ‘canned’, meaning that people were not told the truth about their works in many cases. I promise you, there are some very talented people out there and there are many wanna-be talented people as well. The wanna-be’s were rated as highly as the truly talented people. What I sought was the truth.

The other thing I noticed is that the boards were run by the members. There didn’t seem to be any specific direction and a sense of just being there to promote not the works of their members but as a web-based business. This left me cold. I happened upon a website where I thought that I would give it a chance. How it was advertised was just a front for the site. I thought it was a legitimate site for musicians so I went ahead, signed up, and uploaded music. The response was almost immediate with people responding positively to my music. I went on the hunt to look up everyone who left messages on my site. I wanted to hear their music and not only that, they requested that I listen to them. I was more than happy to do so. Much to my surprise, these people were singing karaoke. This was a web site full of wanna-be’s singing songs that were already written.

Don’t get me wrong. I am not snubbing my nose at them. In fact, I still keep a few songs on that site since there are people there who truly enjoy my music. However, I have not uploaded any new songs in over a year. I think that there is a place for a site such as theirs and if it works for the members, then that is great. I, on the other hand, was very disappointed. After months of looking for sites, having found this one, I became disillusioned that I would find a site that felt real. I gave up looking for quite some time.

Then in August of this year, I happened upon a new site quite by accident. I’m not sure what I was searching for on the internet but I found a link to a site called Indaba Music.com. Well I had no idea what the word meant and it sounded foreign to me, but hey, I’m first generation American myself. The only reason I mention this is because the other site that I found was also based out of this country. So I went to Indaba.com. I went meandering down all the different pages on the site that I was allowed to access. I was amazed by the site. It was a web site that was focused on helping musicians find each other; find opportunities; educate them; provide them with resources; update them on the latest technology out there as far as software programs and equipment, scores, lyric sheets, and the list goes on and on. Everything you could possibly think of and needed was there to be found on Indaba!

I already knew that I would sign up after looking at just a few pages. I whipped out my credit card and paid for a platinum membership. (There is also a free membership without some of the bells and whistles.) Looking further deep into the site, I became flabbergasted. Why? Because everywhere I looked there was a member of the web team looking after its members. Board after board there were mentors from the team answering questions. Page after page, there were team members asking, “What can we do for you? How can we improve the site for you?” Well I never!!! The owners of the site and their employees were all over the place. You were not alone! Allow me to repeat that. Even if I had not met any of the musicians on the web site that are now my friends and family, I would have considered myself lucky to find the site because, I WAS NOT ALONE.

As an aside to this story, let me tell you about feeling alone in this world in short order. I can recall a time in Chicago where I was so lonely that I was crying in my apartment. I felt so alone that I went into the bathroom and gazed at the weeping girl in the mirror. I reached out my hand and touched the cool surface of the mirror trying somehow to console her. Instead, she only cried harder. I left the room feeling even more alone. Finding a web site where I could be a musician, make friends, and have a group of people looking after my needs was a gift from heaven itself for me. I was not alone.

I tentatively started participating. I filled out my profile and uploaded some songs. By the end of the day I had many people contacting me about my music. And let me assure you this is not a site for just the hip people out there. Here, there are many serious composers as well. Every genre you can think of is sponsored in here. Indaba Music recently relaunched itself providing us with even more opportunities, contests and improved moveability throughout the site. I have made many friends and yes, I now belong to a family. This family cares about me and my medical disabilities.

I recently underwent major surgery and spent nearly 30 days in the hospital most of which was in ICU. I was under morphine for the most part. My constant companion in my bed was my laptop. Everyone was cheering me on, willing me to come back to them. They sent me virtual cards and I was closely watching a session that I was a member of to see its progress. You see a group of us decided to form a virtual band and write a piece of music to thank the Indaba team for taking such good care of us. Imagine it, over 16 people uploading small bars of music to be incorporated into one compositional piece. It was a feat and this talented group of people included a video to go with it. I am proud to admit that I am one of their members.

I also need to mention “Shy”. Shy is actually my “Star Angel” from my previous posts, and he is a good example of what a miracle Indaba is. It was Shy’s idea to produce a thank you composition for Indaba and it was Shy who surprised me one day with setting up a blog for me, something I could never do on my own. Imagine that? Someone who cares about my needs who biologically has no connection to me, taking a lot of time out of his schedule to see to my dreams. He is a man with a heart of gold.

I am very busy these days. My husband says I’m too busy. I do have a lot I’m doing on my end of things with taking care of teaching fiber arts to the ladies here, the music, and running a major event in the summer with World Wide Knitting in Public. Yes, I have Multiple Sclerosis and it can be a very dark place to live in the world of MS. But like I said earlier, if you want to, keep searching, think about what you’re good at no matter how insignificant it might seem. Take that, look at it, turn it this way and that way, and find a way to make use of it. Do the same with your body. Don’t give up. Don’t give in. Don’t underestimate yourself. But most importantly of all, don’t underestimate the goodness of people out there who want to give you a helping hand.

I would like to thank Indaba Music and Mantis because they have resurrected a side of me that I had laid aside for a while. I also would like to thank them for embracing me and not telling me, but SHOWING me that I AM NOT ALONE.

I had a restless day today.  I wandered around my house, pick up my knitting, put it down, go into my office and sit, walk away, started to clean, stopped.  I finally landed up back in my office which I could have predicted and everyone else who knows me.   

My office is a combination knitting supply room and a music room. I talk about enabled by my disabilities a lot.  The reason I do so is because that is what happened.  I was a professional musician for many years and on the road a lot.  When the music scene went dry, which it often did, I would take a job wherever I could.  When you’re on your own, you do what you have to keep a roof over your head. Then I met my husband and have been married for nearly 25 years.  That’s the longest I’ve ever committed to anything! Being on the road was out of the question for me now.  I wouldn’t do that to my spouse.  Then I became progressively ill and had to stop altogether.  I couldn’t play live any longer and I couldn’t work.  I went on disability.  

When I came to a dead stop, so to speak, it was very difficult.  It seemed I thrived on the stressors in live and now here I was just sitting around.  I had a lot of time to think about me and I was consumed with my illness.  I spent countless hours looking up my symptoms and at bookstores trying to find out more about MS.  I bought many books off the shelf and ordered expensive neurological books that were extremely difficult to wade through.  The books that I purchased at book stores always left me cold.  They seemed promising at first but then they inevitably talked about MS in a very technical manner.  The same information  over and over in the books was driving me batty.  I was once asked, “Well what is it that you’re looking for in books?”  At first I didn’t know how to answer that question, but after thinking about it I realized that what I wanted was a simple day-to-day informative book about someone with MS.  The details are what I wanted.  I wanted to compare what I was going through with someone else.  I wanted to know if this and that was normal no matter how simple or innocuous the question was.  

In a way, I would say that I was lonely with having MS as a constant companion.  I didn’t want to talk about it because when you try to explain things to someone else who does not have the disease, you can see their eyes go flat with disinterest oftentimes.  That happened to me one too many times until I just stopped altogether conversing about MS with the general public.  You see, MS is not an exotic disease.  It’s a complicated one but not exotic.  For the most part, you would not recognize a person with MS because many of us still can work and many of us have Remitting/Relapsing MS where the symptoms become acute for a bit then disappears.  

MS is a disease whose symptoms often concur with an average normal person who occasionally has the same problems.  What they don’t understand, the general public that is, is that whatever we describe that may be the same thing they go through on occasion is with us nearly constantly even though for some MSers the symptoms wax and wane; for instance, incontinence.  Many people suffer from that but not from a neurological standpoint.  Another one is fatigue.  Everyone feels that way occasionally, but it’s different for people with MS.  It’s another one of those symptoms that you can’t run away from.   I will speak about these issues under a separate post.  

Over the years I continued to buy books and check out the boards on the internet.  The boards are what came closest to what I was looking for.  But even then, those disappointed me because oftentimes, the people on those boards were either undiagnosed and wondering if they had MS or asking the same questions as I was never getting to the meat of the matter.  I then tried the chat rooms.  But those were a waste of my time.  Rather than having discussions about real problems, those rooms were more or less set up for chatter.  I am not trying to disparage the boards of the chat rooms because they serve a needed purpose, but not for me.  

What I really wanted to find out is how others dealt with MS daily; how or if one can turn this around and make something positive out of it.  All I learned was about the negatives of MS.  There had to be something informative on an in-depth level that spoke to living life fully with MS.  I gradually came to realize that I had to reinvent my world and that there was no resource out there handily available to help me.  If there was, I could not find it.  

I was in a doctor’s office one day and while in the waiting room, read some of the brochures.  I kept seeing the word disabled.  It troubled me.  Sure I was disabled in the sense that I could not live my life as others but I wasn’t nonfunctioning.  I then thought of the word enabled and a light bulb went on in my head.  I could feel that light bulb shining over me all day long and I welcomed it because it set me on a new path and I felt enlightened.  

I figured out that rather than thinking of myself as disabled, a term I dislike quite strongly, that I would say that I was enabled but on disability.  This, of course, confused many people.  I would get that ‘huh’ look from them.  So then I would explain to them.  

I am a creative person.  I make something out of nothing.  I take a piece of string and turn it into a garment.  I don’t follow patterns, I just look at a picture or imagine a design and then I make it.  I compose music.  I take a piece of wood with strings on it and pluck away on it and make a song come out.  The same with the piano and the various other instruments I play.  I take a blank canvas and make a painting either by looking at a picture or imagining something.  I can go to a garage sale and find a piece of furniture that is no longer viable.  But when I look at it, I imagine it on its side or painted or a myriad of other things and turn it into something useful for my house.    

It’s all a matter of perspective.  If I see myself as a “disabled” person using the meaning that most people attached to it, I will become disabled with all that it entails.  But if I think of myself as enabled but on disability, well then I still matter.  I still have things to do.  I have a purpose and goals just like anyone else.  So I have to be that discarded piece of furniture on the curb in order to turn myself around and become useful again.  I view the world from a different pair of eyes, a pair of eyes that sees all the possibilities, that believes in all the possibilities.  This gave me hope and a reason to put one foot in front of the other and keep going.  

When this happened, suddenly it was like spring again.  The possibilities were endless.  I just had to persevere and figure out how to things in my own unique way.  They pay people out there to teach this very thing in rehab.  I became my own rehab because rehab programs didn’t work for me.  I was told what to do and how to do it, which was good, but I wasn’t the one thinking up the ways to circumvent new boulders in my path.  I needed to be the one to figure things out.  I needed to use what my mind still allowed me to use or I would just fade away, and I wasn’t about to do that.  

Now I’m here with the help of a good friend using a dictation program to blog.  I am here to tell you about my days so that you don’t have to run around looking for books about people such as me.  I am here to enable you to find your own light bulbs and to help you feel enlightened, because you matter and I care.