Self Help Resources
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.
What a week it’s been! I am very happy that it’s Saturday and I have absolutely nothing planned for the day. On Monday, I saw one doctor. On Tuesday, I saw another doctor. On Wednesday, I went running around purchasing items for a party I was throwing on Thursday. On Thursday, the party of course for the ladies and on Friday, my husband’s work dinner party with all the hoopla.
So let’s see, I may have already mentioned this in a previous blog, but you know how MS works on people with cognitive issues, I don’t remember. Oh well. I’m too tired to check it out. So don’t mind reading some things over again. Monday, I saw my vascular surgeon. A year ago I noticed that my feet were swelling. I thought nothing of it. I thought that perhaps I was having too much salt in my diet or that it was normal water retention, so did my Internal Med Doc and he gave me a water pill subscription, but my feet started to hurt. As usual, I went on Google and started hunting around and all the web sites said the same thing pretty much. Stick your feet up in the air over the level of your heart and cut back on salt.
I hope you’re thinking the same thing I was. How in the world would I get anything done with my feet up in the air? And what about those water pills? I don’t have enough problems with my bladder? I had pills for that too! I wondered then, there must be a major war going on inside my body. All these little pills are probably attacking each other. Remember that movie where people get shrunk down and go into a body? That’s what I was imagining. Gradually I noticed that my legs were beginning to swell. So back to the Internal Med Doc to find out what was happening. He decided that the pill wasn’t strong enough so he added a second pill to take later in the day. I added the pill to my family of pills and would periodically stick my feet up in the air. None of this helped.
Meanwhile, I was seeing a Haemotologist because I was having a severe episode of anemia. My red blood cells measured at 5, which is way too low. She noticed my legs and asked me if my Internal Med Doc knew about them. I then explained to her what was happening and she wanted to update my meds file. When I told her what I was taking and the dosages, she told me that both of those pills were very strong and they should help but since they were not helping, that I should be taken off of them. When she asked me about potassium, I looked at her and said, “That’s not one of the vitamins I take.” She just about had the screaming meemies. Apparently when you take water pills your potassium levels can drop dangerously low. She could not believe that I was not given a prescription for potassium pills. She called my doctor and I have no idea what was said between them, but when she returned she handed me a prescription for potassium and told me to march right down to the pharmacy and get it filled. Have you seen potassium pills? They are horse pills; huge!!! So I took them home and the pill family made room in the box for them.
Over the next several months, my legs turned red and then partially almost black in patches. My poor legs looked horrible and I went out and bought a bunch of long skirts which is easy to do since I only stand 10’5″ tall. I could wear a mini skirt and it would nearly touch the ground! Nothing helped. I decided that the water pills were a waste of time so I removed them kicking and screaming out of the pill box that I keep on the kitchen counter. Happily, along with that, I was able to say goodbye to the horse pills as well (potassium). The pill family closed the circle again. When I went to see my Internal Med Doc, I told him what I had done. He decided it was time to send me to a vascular doctor. That vascular Doc took one look at me and sent me to a vascular surgeon. The vascular surgeon told me not to worry that he would get me fixed up. He ordered some tests.
It turned out the femoral arteries in both legs and the saphenous artery in my left leg had decided they were tired of opening and shutting gates 24/7, so they stopped working and were on permanent holiday. How it was explained to me is that there are tiny little gates in those arteries which prevent blood from refluxing back down. If those gates aren’t working, the proper amount of blood was not going up into my brain. The circulation was skewed. So with the gates not working, the blood that wasn’t circulating was hanging out having a party in my legs which caused all the swelling and discoloration. So there I was with very painful swollen legs and looking for shoes I could get into. By the end of every day my feet felt like two blocks of brick hanging off my now swollen stumps. The feet and the legs matched in their painfulness. Add to that my foot drop and my low platelets; I could barely walk around my house. My diagnosis was deep venous insufficiency.
At the same time all this was happening and seeing the Internal Med Doc, the Vascular Doc, the Hematologist and the Neurologist, I had had just about enough. After a year of shortness of breath and loss of hair, I was able to get control of the platelets barely missing having to get a transfusion. The Hematologist released me from her care. The Neurologist and the Internal Med Doc, I’m stuck with. But sheesh, I had lost a doc so let’s add one here. My Internal Med Doc decided I needed to see a Urologist to help me handle the issues with my bladder. So off I went to meet yet another Doctor. He read the report results of a test that I had taken a few years earlier where it stated that I had a neurogenic bladder. This is where you have both sides of the coin to deal with. On one side of the coin you have urinary incontinence and it was noted that my bladder was very tiny, and on the other side you have urgency, you go, then it feels like you still have to go because your bladder doesn’t empty completely. He decided that my pill family needed another pill. So the family had to deal with yet another newcomer.
Okay, I realize that I’m still on Monday! Getting back to the original paragraph of how tedious a week it’s been; Monday’s visit with the Doctor ended with his telling me that I needed to see someone else. There was nothing he could do about my condition because it was chronic and there was no cure. I asked him why this happens to people and he had no real answer except to say that my condition was called venous insufficiency. He was sending me to some specialists with American with Disabilities to get outfitted with compression gear. I am very short so normal compression stocking would not fit me. I tried several brands but the landed up gathering around my ankles and turning into tourniquets which was extremely painful. So that was the end of Monday.
By this time and actually for a very long time now, I feel as though as a patient, doctors don’t look at the whole me. They just look at the parts of me they are interested in. If it’s not in their field, I am referred to someone else. Little pieces of me are referred out for analysis to different specialists. Even the Internal Med Doctor feels much like someone who is making a list of where to send me rather than helping me, but that’s today’s medical care procedure.
On Tuesday, I met with the compression specialists who made marks up and down my legs every few centimeters for compression braces that were to be made for me. I found out that this was not covered by Insurance because insurance companies think of this more as cosmetic. There is no cure so I guess insurance companies expect you to do nothing about it and just sit about loathing the way you look. It ran me about $1200.00 to have this done. How sad is this? Tuesday wasn’t too bad except that it took nearly two hours to get through the whole process and then the trip there and back. I began feeling disgruntled and just depressed about how my body was just falling apart.
Wednesday was spent running around from shop to shop purchasing items for Friday’s part. It was not a happy time. I was very tired and had a lot on my mind. I walked around in a fog lethargically throwing things into my cart at each store. It was a good thing that I had made an ongoing list or I probably would have never remembered to get everything I needed.
Thursday was the party day for the ladies that I teach. They started arriving around 10:30 and didn’t leave until well after 3:00 p.m. I had ordered some platters and I was thankful that I had, otherwise there would have been nothing to eat. I was not in the mood to crack open cook books. It went well and the ladies seemed to enjoy themselves. A lot of happy faces left me and they cleaned up after themselves.
Friday rolled around and I hungered to play music. I hadn’t had much time to play this week. So I sat in my pj’s and played myself silly. I found a melody line that interested me and was about to put it down on paper when the doorbell rang. Frustrated, I answered the door to my Schwann’s man. This is another valuable resource for those of you who can’t deal with grocery stores like me. Using Schwann’s service, I simply look up what I would like for the week, order it online, and then it’s delivered to me. Usually I’m happy to see the guy, but today I stood at the door with my hair going every which way and in my pj’s. It was 2:00 pm. He wasn’t surprised as he has been with me a while and has delivered food to me when I was worse off. After he left, I went back to my piano and realized that the melody I had in my mind had vanished into thin air. The distraction drove it out of my mind. I was very disappointed because had I been able to get some of it down, it would have helped to lift my spirits.
I realized then that I had better do something with the way I looked. I had a dinner party to attend and my husband was picking me up at around 5:00 p.m. So I jumped in the shower, wrapped a towel around myself and laid in bed for a bit. I considered calling my husband to tell him that I didn’t want to go but for some reason I thought it was a paying event and I didn’t want him to lose the expense of my plate. Later on he told me it was free. Darn!!! As I laid in bed I kept thinking about how I couldn’t keep anything down and I worried that I would embarrass myself. I didn’t take my afternoon pills because I planned on having a glass or two of wine. Try as I might, I could not nap so I gave up and got dressed. I kept telling myself that this would do me good but after attending many of these events over the course of years I already knew what it would be like and I can tell you this much, I was not expecting to have fun. Was I wrong? Nope.
It was nice visiting with some people I had not seen for a bit, but as soon as a half hour into it, I wanted out. There were a lot of people attending and the rumble of conversations permeated my brain. Added to this there was an a capella group singing. The sound of dishes as waiters/waitresses walked around with gourmet trays of hor doevres offering their treasures to everyone also irritated my already beleaguered brain. Those were good; the meal should have been left for the animals outside. Ugh. After about two bites of the main course, I had to leave. It had gotten to a point where if I didn’t leave right then and there, I think I would have started screaming at everyone to shut up. Isn’t that terrible? I get to a point when my brain is overloaded where every little noise is like hearing nails across a blackboard. I had to go. Luckily on the way in the car, I made a pact with my husband and told him that if I gave him “the look”, that he had to take me home. He saw it, recognized it, and made our excuses. The minute I walked out into the cold and quiet night while waiting for him to retrieve the car, I felt such a sense of relief that I nearly cried. I was so happy to see my front door again.
Here is how it is for people with MS. As the body starts to decline a myriad of other complications begin to attack. You can’t exercise the way you used to so you can’t prevent sitting around which doesn’t help conditions like deep venous insufficiency. You are not supposed to sit around too much because it can make it worse. What does a person do who is unable to walk any distance? The bladder problems can lead to kidney problems. The medications and treatments can lead to anemia and even death.
A person with MS dies from complications of MS. Everything we do is at a price. You have to weigh the pros and cons of each thing that you do. Some folks with milder forms of MS do not undergo these issues, but most of us do. Every minute of our day is a time to make decisions. You don’t go about your day on automatic pilot. Everything has to be looked at, thought about, and tried in a simpler and more efficient energy-conserving manner. MS is a difficult disease. It ravages the mind, the body and the spirit. You never know what will happen next. When you wake up each morning it can be with dread. But this is me talking here, and you are getting to know me.
My mantra, “I am not disabled by disability. My disabilities enable me to live a full life but different than yours.” I have to keep reminding myself that. This is not done on autopilot either. I have to work at it. I have to keep going taking each step whether it’s in a scooter, a wheelchair, or with a cane. Little issues to most people are major issues for us. The extreme dread of leaving the house to deal with the outside world has become a new problem for me. At home, I am comfortable because no matter what happens I have built resources around me to help me out. In the outside world it’s very different and I can only rely on what is near at hand and most of the time there is nothing to help. The only thing I can do is opt out and leave even if it’s in the middle of shopping having to leave my shopping cart in the middle of the aisle. Sometimes just driving somewhere to do something is enough to get me into trouble. I get there and I realize I don’t have the strength to get out of the car. Sometimes I even make it to the door and then decide to turn around and go home.
So I am an extroverted person who prefers to live an introverted life. Strange but true. It can’t be helped. But I have purpose and meaning to my life. I make music, I talk to all of you now, and I’ve made incredible friends online. I find the internet an invaluable resource for educational purposes and I find that inside of me is a good person who has found that life is not about what I can or can’t do, but it is about the love I need to give and the love I need to receive. I adhere to keeping positive people around me. This doesn’t mean that people who are ill or have negatives in their lives are not considered a wonderful part of my life, but it’s the who they are inside that I’m talking about. As you know, I can be as negative as the next person, but I know that I am a good and positive person. I know that things will pass and new things will rear up. I know that how I handle each and every new issue is what defines me, not the issues themselves. I’ve learned that in order to love properly that one needs to love oneself first. This a tough one to learn and a tough one to live.
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.