Connie says her biggest obstacle is feeling good about herself while being in a wheelchair. But her renewed social engagement, writing, and idea about a wheelchair-appropriate clothing line make her feel like she has a purpose.
Empowerment toolkit (the tools used by Connie and more)
The power of purpose - May 2012
My biggest obstacle with my MS is feeling good about myself while being in a wheelchair. My wheelchair has impacted my self-confidence in a very negative way. I used to love clothing and loved shopping, but my wardrobe is entirely different now. I haven’t been able to find clothing that is stylish, practical and comfortable at the same time.
I’m sure there are other women with MS who are having the same difficulties. So my dream is to create a workshop or seminar on how to dress in wheelchair-appropriate fashions. This would be a tremendous boost to my self-esteem, and for many others, as well. I don’t know if any clothing exists for wheelchair users, but what a gift it would be to discover or even start one!
I’m a firm believer in the power of positive thinking. I also know the havoc that a negative outlook can create with this disease, as well. MS robs us of so much that we need to have hope and strength to live our lives as fully as possible. I’m still searching for my purpose now that my life has taken such a drastic turn. Helping other women would give me the power to feel that I can still lead a productive and meaningful life. Who knows—maybe with help I can start that new clothing line for women in wheelchairs! I could even help myself while helping others. I really couldn’t ask for anything more.
Kansas – July 2012
One of my favorite movies from my childhood is The Wizard of Oz. Every year when it would come on TV, I’d sit down and be carried away to a land of beauty and good and also to a place of darkness and terror. One of the lines from the movie that I remember the most is Dorothy telling Toto that they were not in Kansas anymore. After this past weekend, that describes the way I’m feeling now. Although I’m not from Kansas, the feeling of being transported to another world where good outweighs evil and positive trumps negative is exactly what my husband/I experienced the weekend of July 12-15, 2012 in Denver, CO. We began to embark on a journey that, after starting, would take us to a place we’ve never been to and return us to a place that will now be much happier than it was when we left it. So our trip begins...
We flew to Denver, CO, to take part in a program sponsored by the National MS Society and Genzyme, a Sanofi company titled “Everyday Matters”. The seminar was on the subject of positive psychology and was based on/conducted by the author, Shawn Achor who wrote the book The Happiness Advantage. We learned the power of positive thinking in helping us live better, healthier and happier lives. But it wasn’t just a workshop on positive thinking. It was much more than that. It gave us the tools to use in building lives that start w/happiness first and then success. Although we’ve grown up with the philosophy that is totally opposite of that, Shawn educated us on the seven principles to use in obtaining the happiness/success that we seek.
Now that we’re home I had a chance to sit back and think about all that we learned from this workshop and the practice we must use in putting these seven steps to work in our lives. It reminded me of all the things that Dorothy uncovered in her visit to Oz. She saw the positive in Glenda, the good witch, and the traits that her new friends were seeking in order for their lives to be better. And she saw the negative in the wicked witch of the West and her followers. When she finally returned home, she saw things in a very different light and she realized how important the positive is in leading a life that is happy/fulfilling. So just as Dorothy returned from her trip with a life-changing attitude, so did my husband and I. While it’s great to learn new ideas to how to make your life better, it’s the putting into practice what you learned that will truly make a difference. That’s what my husband/I hope to do. We want to follow and use the principles laid out to us in order to be happy (first) knowing/believing that success will follow.
While we weren’t in Kansas, we were in Denver being transported to a place where we met wonderful people and making friends that we hope will last a lifetime. We learned how to actually make the positive happen. The best part of this is that we’re going to see all the people we met this weekend again in Dallas, TX, in the fall. And with the age of computers, we’re able to keep in touch and share w/each other all we’re learning on this journey. Our trip was wonderful and we’ve gained the knowledge to turn our lives around. We’re like Dorothy – glad to be home and anxious to use our tools in building better lives.
Con's line – August 2012
I did some more searching on the internet today for clothing for the disabled woman and found exactly what I found before the other twenty or so times I searched! I’m mistaken when I say that there are no clothes for us – there are but what I saw wasn’t anything that even tempted me, and I’m sure many others, in the least. Here are some of the examples of items I found:
- A denim ruffled shirt with ¾ length sleeves that kind of caught my eye – for the budget price of $89! Not in my budget!!
- A plaid, short sleeve blouse for a mere $45.
- A plain (and I mean plain), short sleeve t-shirt priced at $28, and if you wanted a little variety on this, there was a plain, short sleeve t-shirt w/a twisted neck that cost $48! Yeah my neck would have to be pretty darn twisted to pay that price!
I guess by these examples, you can get an idea of really what is out there which is almost nothing. And it wasn’t just my imagination that most of the women pictured had white hair. Please don’t get me wrong – I have nothing against older women but not every disabled woman is a senior citizen. There has to be a broader range of clothing for women of all ages.
Now that we’ve discussed style, let’s move on to another IMPORTANT topic – PRICE! There has to be a clothing line developed that would enable disabled women to feel/dress their best w/o breaking the bank! The prices of everything I saw on the Internet were ridiculous and highly impractical. And speaking of the Internet, while it is truly convenient, many women would love the ability to actually go into a department store and shop in a special section that featured clothes for us and was constructed in a disability-friendly design. That would be totally awesome! In addition to the Women’s, Men’s, Children, Jewelry, Cosmetics, and all the other various departments, there would be a designated section for Disabled Women. I know from my own experience of having MS and being in a wheelchair that being able to shop again in this manner would boost my self-esteem so much and, I am positive, would help countless other women in similar circumstances - women who just want to be able to browse at different fashions, compare prices and see what’s available for them. Most of the women I know love to shop. To me, it was like a hobby.
My dream is a “two-parter” – first the clothing needs to be designed/made. These are just a few of the features that the design/clothing would include: 1. Ease in dressing, 2. Larger buttons/buttonholes, 3. Basic/stylish, 4. Side vents, 5. Longer in back, 6. Moderately/affordable priced.
The second part of my dream is to have the clothing line installed in major department stores (yes I dream big!) in a handicapped-friendly environment that would include: 1. Wider aisles, 2. Large dressing rooms able to accommodate wheelchairs and including safety bars, 3. Layout/design of the section that would involve ease in shopping, 4. Various regulations that comply with the ADA. These are just some of the ideas that I would love to see developed.
In addition to MS, I’ve suffered a long time with the disease I labeled FMP – Finding My Purpose. I’m hoping that with the development of my dream clothing line this disease will be in permanent remission. Yes, we might be disabled/handicapped, but we’re still women, and I know in making women feel better about themselves I will finally have Found My Purpose.
Baseball – August 2012
Baseball is one of America’s favorite sports. The season stretches from early spring to late fall. It begins in March/April with spring training and proceeds to late fall ending with the World Series. In addition to it’s fans traveling to see the games, it draws them even earlier when they also arrive at spring training to see the players prepare for what they hope to be a winning season. And the most devoted fans follow through to the World Series. I’m sure that many of those who attend this grand event are there as much for the sport in general and are in attendance regardless of what team has made it to the finals. It wasn’t until I watched the World Series with my son that I realized what an intense game it really is and it blurred the vision I held as it being a fun and relaxing, all-American pastime! The more I thought about how much concentration and calculation goes into this game the more I was reminded of how closely this game actually mirrored real life.
The first connection I made between baseball and real life began with the pitcher and the kind of ball that is being pitched which in turn is directly related to the type of batter this ball is being pitched to. See, to me, it sounds complicated already! Is it going to be a “fast ball” with the speed of the ball actually being measured? Will the pitch be a “curve ball” designed to confuse the batter as to which direction it’s actually going? Or it could be a “slow ball” the definition of which escapes me. I know I’m showing how little I really know about this sport! And this is just the beginning of the strategies and formulas used in baseball.
The difference in the type of pitches being used reminded me of the various pitches we’re served in real life and how we respond to each one. Can we handle the “fast balls” life throws at us? Are we able to hit them without missing and, if we do hit them, how strong are they and how far do they travel? The “curve ball” is probably the one we’re so used to seeing. Life has a habit of pitching those at us and seeing how we respond to them. Are we able to hit them and send them back in the direction they came with a feeling of satisfaction, maybe even elation? How many of these do we miss allowing ourselves to fall into the negative mindset of not being able to handle our problems? Even the “slow balls” have their challenges making us impatient for what life has to offer. Although I admit, I don’t know a thing about how the batting averages are calculated, but how do ours compare in handling what is pitched to us?
I only touched the tip of the iceberg in what I learned from this sport but I just have to do it in small steps because there is so much to learn. And I think life is much the same. We learn as we go along and hopefully with practice we can improve our batting average scores to place us, at least, in the category of decent, well-balanced players. We know that in any sport constant attention has to be paid in trying something over and over until we get it right. That’s what life is - we’re just trying to get it right!
It's not just physical – September 2012
In my recuperation from an MS relapse, I’m undergoing physical therapy to help me regain, and hopefully increase, my strength. I am constantly amazed at what I’m learning. I’ve had therapy in the past but this is a little bit different and more involved. Yes, many of the exercises are the same but I had no idea how much mental work is necessary for the recovery process. And I’m so excited as I discover that so many of the principles in physical therapy are the same ones that I’m learning about in my recent introduction to the world of positive psychology. And now it all makes sense. My therapist is showing me the “why” of each exercise and how it’s not just muscle strengthening that is needed but mind strengthening as well. It’s retraining the part of my brain that has become sluggish because it hasn’t been used for a group of muscles that really haven’t functioned lately. Sound familiar – it’s the path of least resistance we learned about in our habits. Here is a brief review of what I’ve learned and plan to use in regard to my physical and mental therapies:
◦ Our muscles and brains need positive energy in order to work effectively.
◦ Our thinking affects our muscles as well as our brains.
◦ Muscles and brains follow certain patterns both good and bad.
◦ Setting reachable goals is necessary in physical recovery as well as in living with a positive mental outlook.
◦ Turning bad habits into good/healthy ones is done both physically and mentally.
◦ Control is critical both physically and mentally.
“Real people” support is critical both physically and mentally. Recovering from my recent MS flare-up has proven this method to me firsthand. I would not be as far along as I am today physically and mentally without it. I’m now going from the isolated, lonely side of the fence to the wonderful, healing side and none of this would have been possible without the help of my skilled medical team and my entering the world of positive thinking, feeling and acting.
I found yet another way that the physical and mental blend together. This way is the use of “catchy and memorable phrases” in getting my muscles to start behaving and do what they’re supposed to do. For example, the phrase “Nose over toes” is often used in helping patients to remember to lean forward when standing up. “Don’t drop or plop” is one I came up with to remind myself of the need to be in control of my muscles when sitting down and how important this is. In my journey to stand or walk again, I have to constantly remind myself of this, as it is truly a safety issue. Dropping or plopping into your seat is dangerous for many reasons – the risk of injury to your tailbone is one and the possibility of missing the seat or having it move out from under you. In improving my length of time standing I was taught that it doesn’t do any good to have a long standing time if I then get so exhausted that I just drop or plop down. I need to be in control of my muscles and if that means that my standing time is shorter, then that’s what is necessary. In using this rule, I’m constantly reminded of being in control mentally and choosing how I’m going to think and/or act and how the two ideas work together. And finally, one of my favorite phrases is “Use it or lose it.” It is so easy to remember and so true. It’s a constant reminder that I need to exercise and use both my muscles and my brain because I certainly don’t want to risk losing the abilities that I have left. It also makes me thankful. I’m grateful for the physical care I’ve received and the positive energy that surrounds me in the MS Everyday Matters program. I need both. It’s been a very long time since I’ve had the feeling of hope but I have it now and it feels wonderful!
War – September 2012
We all know that even the word “war” conjures up feelings and emotions of all kinds. Worry about an ongoing war, which sadly seems to be all the time, brings on concern about how it affects the area in which it’s being waged and worry for family members, friends, co-workers and all the others who are fighting a war that, so often, many of us don’t even understand. The devastation brought about by the injuries and deaths that we experience in those around us is inescapable and exhausting. Grief seems to surround us along with a sense of giving up as we struggle to put as much distance as possible between us and all the results/heartaches war brings. I remember my dad, a Navy veteran of World War II, saying many times that the war he fought in was so different from the ones fought today. He said that at least he and his comrades knew who the enemy was and what it was that they were fighting for. He compared that with the numerous wars of today often stating his empathy for those in the service and the confusion that must accompany them in fighting in so many different countries and for so many different reasons. War is excruciatingly painful wherever it’s fought and for whatever reason it occurs.
In reading something that a friend, who also suffers from MS, wrote recently I was reminded of war and the strength it takes to tackle something on a daily basis that we have no control over. She wrote about the extreme fatigue she suffers as a result of the MS. For those of us who suffer from MS we wage our battles every day, but what I realized from what she wrote, is that our individual battles can be, and are, very different. The crushing effect of this fatigue is something I don’t experience and I started to think of the others I met recently who have MS and all the diverse problems we try to constantly manage. Some patients suffer pain, numbness, weakness, vision problems and a whole list of various complications while others suffer very little from these particular symptoms. They might endure a multitude of other symptoms associated with this disabling disease. But there is one thing I’ve discovered in my introduction to these people who I now thankfully consider my friends. I’ve learned that while we are all fighting our individual battles, we are battling the same war and it is, indeed, a tough one. We’re attempting to live lives that are full and satisfying even while striving daily to rise above our struggles. Judging by the strength of these people I’ve just met we can be sure of one thing, and that is we’re winning. Winning in this case is not being cured of this life-altering disease but continuing to combat our enemy and increase our strength in doing so. There is definitely strength in numbers and the personal battles we face now will make it possible, in the future, to conquer this debilitating illness and all the frustration that accompanies it. This enemy is well known and it is just a matter of time until this war is won.
My fall – September 2012
Well, it happened again. Another fall. It was the same MO as before – fall, nothing broken (thank goodness), and then the Catch 22 begins. Since I have so much practice in this area, I know what I’m now facing. Catch 22 is the name I’ve given to the struggle to get up. But let me back up. Before I start this process I have to untangle my feet and legs from wherever they are (usually stuck somewhere under my motorized wheelchair), check their condition, and finally try and position myself to begin. Now comes Catch 22, which starts out with usually a pathetic try to right myself. I note the time – this time it was about 8:30 a.m. I try several more times to get up with no success. Then I have to rest before I try again. Then I try to get up, then I have to rest and this series goes on and on and can, in fact, continue for quite some time. This time I’m trying very hard not to panic but, since this is the first time I fell since the falls and fiasco of my recent MS relapse, hospital stay and rehabilitation hospital stay, I’m having flashbacks that definitely are not helping the situation. And then the Everyday Matters program begins.
I’m on the floor and I begin to think if ever the practice of positive psychology is going to be tested, it is now. Keep in mind that I’ve already taken the first step down the slippery slope of the negative hill, and I know it takes very little effort to continue this slide at an alarming rate of speed. But this thought brought with it an alarm bell and I began to remember a little of what I’m learning about in positive psychology and that is that our habits travel the path of least resistance and, since the negative certainly has practice following that path, the descent begins. But the ringing of the bell pulled me back into the new ways I’m learning and guided me back to the fact that I can choose to try the positive way. If I choose this way often enough, then the positive thought will become a habit thus forcing the negative one down its own nasty path and hopefully destroying it altogether.
I also remembered (this is one of my favorite ones) that the brain is more creative when headed in the positive direction and that creativity is definitely something I could use in order to figure a way out of this dilemma. I needed to create a way in which to align my body and use the strength I have in order to get me back into bed (which at this point seemed much easier than trying to get into my wheelchair). Of course with my track record, which should be a little better by now with all the physical therapy I’m receiving, I knew that I would have time to hopefully even remember more of the principles in order to turn this situation around and actually test this new theory I’m learning. Well, in fact, I did have some time as I looked at the clock which now read 9:30 a.m. meaning that I had been trying and resting and thinking for an hour now and I just wanted to get back into bed! Well shortly after this clock check, the positive thinking kicked into gear enabling my muscles to align and get the strength and……………I made it! I’m back in bed. Ok, now just to try out the positive psychology one more time, I have to try to get out of bed and make it to the wheelchair this time. I’m happy and relieved to report that it worked. I’m in my chair and finally ready to start my day.
Hopefully I can catch my breath before the next test. I’m just hoping that the next test doesn’t involve sitting on the floor!
What's behind the mask – October 2012
As we enter fall in Pennsylvania, we’re surrounded by all the telltale “signs of the season.” Everywhere we look we see the beautiful leaves that are now orange, red and yellow. Mums are displayed in their vibrant colors of yellow, orange, and deep burgundy and we also see those with two colors. We can’t miss the pumpkins – those in their natural dress and the ones we’re starting to see carved in amazing designs and painted like they’re a painter’s canvas. Candy, including the famous candy corn, is everywhere you look. Other small snack items are displayed as well as we gear up for the Halloween trick-or-treaters. And we can’t escape the never-ending advertisements of costumes and more costumes! Halloween is certainly not just for kids anymore as the variety of these costumes grows more each year and almost as many adults are featured in them, as are children. And one particularly caught my attention as it reminded me of one of the principles of positive psychology that I’m learning about. This character is the well-known Zorro.
The Zorro Circle principle is, in my opinion, one of the most helpful as it teaches us to begin our journey to happiness and fulfillment on a smaller, more manageable scale and growing from there. The story of the legend of Zorro is fascinating and one that was unfamiliar to me. In reading about his life and the training he received from his mentor, I was intrigued by this idea of mastering the smaller tasks on a limited level and building on them. The term “Zorro Circle” is an easy one to remember and visualize as he trained in a restricted area and only when this area was mastered did he move on to the next. And in my learning the use of the seven principles of positive psychology in my life, I’m finding myself surrounded by tools and ideas necessary to actually bring about the changes that will guide me to a happier and more meaningful life.
So as we prepare for the upcoming Halloween holiday season, we can enjoy the fun that goes along with it. I’ve always viewed it as a time to enjoy the fun of masquerading and dressing up as characters, parades, and parties and of course the candy! And part of ending one season and beginning another one. Fall, to me, represents not only the fun that we have in carving pumpkins and other Halloween traditions, but also the Thanksgiving holiday that is right on its heels. We’re so blessed and it’s a time for those of us who have much to help those of us who don’t. It’s a time to appreciate that we live in a country that allows us the freedom to choose which holidays to celebrate and how we want to celebrate them.
So as we approach the fall season complete with Halloween and Thanksgiving, we can take from these holidays what we want to enrich our lives. I’m especially thankful for what I’m learning in positive psychology and for the fact that when I encounter a Zorro character, I’ll think of the legend and realize the direction my life is now taking. I’m still in the early learning stages on my path to happiness and a life full of challenges that I’m not afraid to take on. So when you encounter one of the masked characters, just remember it’s only a dress-up celebration and that behind some of those masks lie real heroes who look out for those less fortunate and fight for those unable to fight for themselves. It’s not the mystery of the mask but what lies beneath it that is important. On a holiday complete with characters of all kinds, some scary and some not so scary, we realize that what we’re seeing is “make-believe” and that the true spirit is just a mask away.