Friday, December 30, 2011
In this house, Be The Change is inspired by the life of Michael Zimanske and educates the world, especially those involved in healthcare, that our real life experiences challenge each one of us to Be The Change. This expanding campaign gives a voice to the perspective of patients and their family members with positive impact on relationships with medical providers. It offers endless opportunity for everyone to join in and Be The Change in their respected role.
The intention of the Be the Change campaign is to motivate and spark change in others. Little did I know I would be the one most changed by the compelling stories and countless experiences shared with Be The Change makers.
Most definitely, I’ve been primarily changed by rare disease and the passing of my son's earthly life to his eternal one. Michael was a life changer, a big change maker. However, I’d be remiss not mentioning I’ve also been changed by my parent’s medical scenarios, their end of life events, my own breast cancer and my husband's heart condition. It’s a lengthy medical list defined by medical and human experiences, resulting in life changing events, which speak into Be The Change. They are at the heart of the campaign and created more change makers.
In this house, among the varied changes are model change makers. They enlighten, teach, and encourage as we travel a changed bumpy road together. First and foremost, they are my husband and daughter who always believe in me, my family and friends who stand by me. Faithful change makers that demonstrate how to love a changed person with no manual or instruction.
Additionally, I’m constantly changed by healthcare providers inside and outside of medical crisis through gifted talent. Medical change makers who believe with me that each one of us share in the responsibility to Be The Change. They think outside the box and put provider-patient-family collaborative care into day to day practice. These women and men are our medical future, striving to provide high quality and safe healthcare for us. The outcome is humanized medicine through service hard to measure.
Most profoundly, I’m changed by the patients and families who today fight the battle of disease, especially rare disease such as SIOD. They are courageous, resilient warriors that give definition to the word hero, with no badge of honor. Each day, weary from the day before, they stand bravely in the midst of tremendous human and medical challenges and press on. For them, BTC continues with a promise to advocate on their behalf, represent hope and possibility in their perspective and will never forget the face of suffering.
Thank you change makers, for doing great things. Mother Teresa once said, “Not all of us can do great things. But we can do small things with great love.” That’s what we do in this house.
Happy New Year…Be The Change in 2012!
Friday, December 16, 2011
As the sixth Christmas approaches without Michael physically present and longing for his presence, these memories are priceless treasures wrapped inside my heart. They quiet my grief and provide clarity in the debate over presence versus presents, especially at this time of the year when making gift giving choices.
Although Michael loved a large number of presents, it was my presence before and after the gifts were opened that he loved even more. He desired my full attention while he counted each gift and as he guessed what each one contained. He could hardly wait to have me play the new game with him he received Christmas morning or sit next to him drinking pop and watching the new movie Santa brought. I recall some of my responses to his persistent requests for my time. In a minute Michael, after I finish dishes, I need to make a quick call, were a few.
It was my presence in those experiences that made the present more valuable to Michael and definitely to me, then and even more so now. Due to Michael’s life limiting disease I was naturally more sensitive to each passing day. However, it was still a challenge to find a balance in it all. Often our circumstances or my daily tasks at hand became more important than the gift of time together.
Michael was relentless in asking minute by minute when it would be time to open presents, at Christmas or other. I was always present for his gift opening but I’m quite sure I wasn’t always as present other times. Moments that didn’t seem as important as the things on my to- do-list, but in retrospect, they really were. I don’t remember the gifts we gave Michael, but I remember the times we spent together.
I’ve become much more conscious in how and what I give and the meaning that drives it. It’s one of the reasons behind the choice to not send Christmas cards this year. Even though I consider it an important tradition, my time and presence was needed elsewhere. Each year, its many changes invite us to ask the question, where are my gifts tangible and other, most needed?
Because of the experiences I’ve had with people in my life no longer able to open presents with me, I find little reason to debate presents versus presence anymore. Being fully present in relationships, giving our presence just as much or even more often than presents, is usually the real gift we seek. A little boy taught me that.
From our family to yours, Merry Christmas, Happy New Year and…Be The Change!
Monday, November 28, 2011
With the Thanksgiving season coming to a close and another even richer season approaches, I’m abundantly grateful for a multitude of things in my life. It’s a gratitude that goes beyond my worldly processions, in an abundance of family and friends, which consistently show me love and kindness. It’s a depth of gratitude, which flows from the medical situations that changed me and my family.
Just recently, I found myself abundant in random acts of kindness after being thrust back into a caregiver role due to my husband’s knee injury. He was struggling with an over abundance of pain following an arthroscopic knee procedure. The typical recovery was complicated and delayed by other issues. I was reminded how fortunate I am to not only have caring family and friends but extremely fortunate to have immediate healthcare relief. We have medical care that’s abundant in convenient locations complete with urgent response to patients and families in need of help. Many are not that fortunate.
It’s been said that in some areas of the world, if you have clothes to wear and food to eat you are considered fortunate and labeled rich. That statement often runs through my mind. I thought about it a few times during my husband's knee crisis. I think about it as I prepare my weekly grocery list. It comes to mind as I make my Christmas shopping list. From events to lists I see fortunate and rich defined in the many ways I'm confident I will always have enough. The challenge is to be content with the minimum and give from the abundance to others who won’t have enough.
Greatest abundance lies in what isn’t tangible. A quote by Johannes A. Gaertner says, “To speak gratitude is courteous and pleasant, to enact gratitude is generous and noble, but to live gratitude is to touch Heaven.” Patients, especially children suffering chronic or rare disease have a way of giving us a glimpse of heaven in their earthly life and exhibit a sense of gratitude not easily explained. A closer view almost always displays an abundance of gifts, gleaned from pain and suffering, which are not tangible. They are life lessons gifted to us and put value in seeking abundance outside of material things.
This season I hope to take a broader view and reach out to those who silently suffer, yet allow us to see a piece of heaven here on earth. This year, I’m adding to my wish list, the needs of those who lack. I want to give from my abundance, live gratefully and demonstrate gratitude in action.
Join me and Be The Change our world is waiting for.
Friday, November 11, 2011
One side of me loves the fact I’m a Minnesota patient and family member that lives less than sixty minutes (based on unpredictable traffic) from a cutting edge healthcare campus. That includes a highly regarded learning environment, which one day, may educate the medical student who will find the cure to cancer or a rare disease like SIOD.
On the flip side, I hate the fact my son Michael and others like him suffer horrible diseases there. Among hope and possibility abundant throughout the U of M campus, looms the opposite in despair and uncalculated fear. To this day, when I enter the East Bank, I need to pause, take a deep breath and alert my commitment in the fight ahead, warring against the dark memories about to torment me.
Faithfully, I’m reminded of the change maker waiting in the shadows of that concrete jungle, my angel Michael. His legacies lead me back to the U of M with a different three ring binder these days labeled Be The Change. Back to where it was whispered to us years ago. Steps that are taken as testimony to Michael’s courage, I walk back into the pain and press past the fear, towards the change waiting on the other side of all that fear.
Last spring, in a changed capacity, I returned to the University of Minnesota, sharing our story with a group of nursing students and graduating nurse practitioners. I spoke about the little boy with a big disease who changed me, our family, and possibly a few healthcare providers at the U of M. I cited specific examples how medical and human experiences impacted Michael and our family not just in his life as a patient but in his whole life outside of the disease, beyond the concrete jungles.
I shared my vision for the Be The Change campaign stating, Be The Change isn’t just me or Michael. It’s us together. It’s the patient, family and provider together sharing healthcare responsibility in an enhanced relationship as partners, inside and outside the medical arena. A partnership where each of our perspectives is valued, and each of our experiences provides an expertise that’s utilized to its full potential.
A new relationship was created for me at the U of M Center for Children with Special Health Care Needs, in honor of Michael’s Be the Change legacy. It’s a healthcare team demonstrating patient family centered care beyond words. Ways WE can all Be The Change. Click here to view the Be The Change presentation at the U of M.
Now I’m familiar with another outstanding team of healthcare providers and educators at the University of Minnesota Hospital and Clinics. It was well worth the deep breathes I had to take to get there. I can honestly say, the love side of my relationship with the U of M has increased and will continue to Be The Change.
Friday, October 28, 2011
Worry and anxiety teamed up in my life at a time when I was preparing for a short trip to Vegas with a couple of friends. Bald from chemotherapy, bloated from cancer medications, feeling barely beautiful I still said yes to the trip. Despite everything I was bound and determined to find fun again, honoring the king of fun, my son Michael.
Out of nowhere, (actually it never really is) I started to worry about traveling without my family. What if something happened to them while I was away or what if something happened to me? Worry took over. Of course, anxiety came too and made me doubt my decision to take this trip. It peaked the day I had to leave Target without purchasing the trip items on my list because my enemies, anxiety and worry convinced me something bad was going to happen if I go on this vacation.
Proud to say, worry and fear gained no strides that week. Due to the encouragement and prayerful support of family and friends I took that trip to Vegas. I enjoyed a relaxing, worry free couple of days and realized I had to change my relationship with worry.
Through books and broadcasts I searched for practical simple steps to get rid of my worrying ways. I learned to change how often I used the word worry, giving it less verbal power so worry got replaced by concern. I found that a simple change to the word covered my worry thoughts with a more accurate reality.
As I let worry go, in word and thought admitting worry has no place here, spiritual grace took over, eliminating worry as the whispered lie that it is. The truth is we can’t change any outcome with worry. It’s a waste of energy. However, putting energy into seeking the truth reveals how to really fight a personal war against worry.
My work continues at kicking out negative ways of thinking, holding on to only truthful thoughts and being more selective in the words I speak out; standing firm in hope and faith. There is a difference in saying I’m concerned, not worried.
Do you need to change some words or thoughts that challenge the peace and calm of your day?
Believe it’s possible to find rest among the burdens in life. There you find fun again.
Don’t worry, be happy and Be The Change!
Friday, October 14, 2011
The seasonal change into winter is tough for me and seems to be getting worse the older I become. I love summer. The long bright days, lazy lake vacations and ice cream cones on a hot summer night are a few of my favorites. I don’t like winter. The bare trees, cold temperatures and white flakes (I can’t say the four letter word yet), generates a very different temperament in my day.
A friend said to me recently, “I’m trying to mold into the wood work and you’re trying to jump out of it!" After a hearty laugh we agreed that statement was very true. As friends we share common bonds, but have many differences too. Together we weather lots of changes occurring in varied seasons of our lives. Most often, it’s our differences that offer the biggest gifts in friendship and speak into the full circle of that relationship. Very much like summer and winter.
Summer and winter share the title of seasons, which is one thing they have in common but each individual season and its changes are very different. Each one is unique in its purpose and although different, they’re dependent on each other. A hot dry summer leads to a particular kind of winter and the cycle continues.
A similar analogy applies to friends. Most of them are very different, each with their own unique purposes. Yet, year after year among the changes, friends depend on each other; trust in each others process, offering stability to the uncertainty of change and the cycle of friendship goes on.
Unlike the relationship of one season to other, friends have the ability to love us through the changes. Some of these changes are exciting like a sunny summer day, easy to love, while others are stressful like a cold winter storm, and requiring a deeper love and appreciation.
I’ve decided to change my winter attitude. Beginning today, I’m looking forward to new exciting ways to love winter and renew my respect for what it does for the other seasons. The same way my friends love me, respect my many changes and my “out of the wood work behavior”; unconditionally and without judgment.
Everything is connected together, through every season, to Be The Change.
Thursday, September 22, 2011
Asking questions is a part of my personality, in my DNA. For me, questions provide a verbal connection to my desire to go deeper and discuss something not readily exchanged.
Last Saturday, I rode with the New Prague Chief of Police in the lead cop car of my hometown parade during the annual Dozinky Festival. Afterwards, a few people questioned how that distinct privilege came my way. My answer was simple; I asked him if I could. The truth is I had been asking him for several years, but that’s another story.
There’s a wide range of opportunities lost mainly because we don’t ask enough questions. No doubt, asking questions involves a variety of risks such as rejection, judgment, and exposure. There are times when questions require patience or asking more than once. Yet overall the outcome almost always outweighs any risk or challenge involved. Even if a desired outcome isn’t obtained, the experience of asking lends confidence to the next question waiting to be asked.
My son Michael use to ask lots of questions. He would fire one question after the other, sometimes not waiting for the answers. I remember driving to appointments and he would ask random questions about the unknown people he saw on the street. I guess there is no reason to question who he got that personality trait from.
Asking questions is a key component to good relationships. Whether it’s a personal, professional, or healthcare relationship we need to overcome fear and trepidation in asking questions, especially ones that have never been asked before. You never know when one question might lead to a new discovery or change the definition of your relationship.
Ask yourself, do you want to be the person standing on the sidelines, giving into fear or the person who is bold, asking questions regardless of the risks, ready to Be The Change?
That’s a great question!
Friday, September 9, 2011
My personal blog will continue to house my reflections, while the newly enhanced BTC website will serve as the home of things BTC-related. While I am intricately connected to BTC, I want to make the distinction between my role as a speaker and patient family consultant in the healthcare environment and the BTC campaign, which is for everyone.
Thank you for your support as I continue to develop new partnerships, new relationships and new ways for all of us to BTC.
Ways you can stay connected:
Friday, September 2, 2011
There was standing room only at the University of Minnesota’s surgical waiting room that hopeful day in August 2004. Chairs and couches filled to capacity physically, emotionally and spiritually by family and friends. Each one waiting for the kidney transplant to be done, to hear it was successful and that finally kidney dialysis would be over.
Michael and many warriors fought hard to get to transplant day. Gallantly they shared in failure and success, all which led them to the perfect scenario. Each one anointed with divine purpose in appointed roles important to the process. Two postponed surgical dates and a near death dialysis experience complicated the way but steeled our resolve. Ultimately, one aunt made room for the other, both willing to be kidney donors, both heroes. One enduring the process of donor elimination as the other became Michael’s donor perfect match.
August 30, 2004 was definitely a thumbs-up day. We got the news we anxiously waited to hear. The kidney transplant was a complete success. Seven years later, job well done still echoes in the spirit of the gifts exchanged. Not only on that special day but in the days that preceded and followed. Heroic examples of ordinary people willing to Be The Change in extraordinary ways that gave all of us a gift.
According to Life Source, a non-profit organization located in St Paul Minnesota, nearly 109,000 people are waiting for organ donation and the number grows each day. Registering to be a donor is easy and can be done right now, online. Your decision to be a donor can potentially save up to sixty lives. You can give a gift.
Leave a legacy similar to Michael and his two aunts. You can be the hero someone is waiting for. You can Be The Change!
Feel free to contact me if you have any questions or concerns about organ donation.
Friday, August 26, 2011
Special thanks to Jan Larson, Executive Director of Roll With It (RWI), Heidi Schwitchenberg, Founder of RWI, Keith Schwitchenberg, President of RWI and Marco, the Corporate Sponsor of the tournament.
A big thank you to everyone who participated in the golf tournament this year. Whether you golfed, volunteered, or made a donation know that your contribution was recognized. Whatever the donation, big or small, it made adaptive sports and recreation possible for children and adults who otherwise might not participate.
RWI makes our communities aware of the possibility that exists through adaptive sports. RWI participants give us a view of the exceptional and demonstrate in action, "It's not what you push, it's what pushes you."
Consider ways you, your family and friends, or your company could raise funds for RWI in the future. Ask your employer to sponsor a golf team for the Michael Zimanske Golf Tournament in 2012. Keep checking the website for updates about next years golf tournament, other upcoming RWI events as well as various opportunities for you to help RWI.
We are extremely grateful to RWI and many others who fill the empty spot Michael once occupied. Not only do you honor his competitive spirit at this golf tournament but you surround us with love.
It is with deep appreciation we say, thank you!
Theresa, Jessica and Donn Zimanske
Friday, August 19, 2011
RWI operates true to their mission statement. It’s exactly what they did for my son Michael and what they continue to do for others.
Heidi Schwichtenberg, Founder of RWI is a quiet yet assertive basketball superstar. She helped us realize that in spite of Michael's unexpected physical changes, which came from his rare disease SIOD, he could still participate in sports. By more action than words, Heidi showed Michael a wheelchair should not stop him from being the fierce competitor he instinctively was. Those words of truth, coupled with Michael’s “need for speed”, was the beginning of his sheer determination displayed on the basketball court and more importantly, in his life.
In the height of confusing medical appointments and life altering statistics, Michael attended county fairs and integrated basketball scrimmage events promoting adaptive sports with Heidi. Often I thought, we don’t have time for this but I could see the renewed confidence being put back into Michael and our family so we continued. A fast friendship developed between us as we traveled Minnesota with Heidi, discussing and demonstrating the many benefits of RWI. Michael’s personality shined as he showed the crowds the skills he controlled in a small red wheelchair. Simultaneously and somewhat unaware, he learned to let go of other abilities. With a front row seat, we viewed Michael’s disability become a new found ability; the purpose of RWI.
This Monday, August 22, RWI is sponsoring the fifth annual Michael Zimanske Golf Tournament in honor of our hero Michael. One of the many adaptive sports heroes in Minnesota. My family has been eternally changed by the self-less work of Heidi Schwichtenberg, her family and the entire RWI organization. Thank you for making the world a better place for everyone.
Consider your response to participate or donate to RWI once you hear about a young man who didn’t know it was possible to play sports in a wheelchair until he met Heidi and Michael. Now he participates in multiple adaptive sports, thanks to RWI. Out of gratitude, he and his family volunteer at the RWI golf tournament. Another example is from a boy who said, “thanks to Michael and RWI, I can play power adaptive sports now.” His family also volunteers at the tournament because of their appreciation for RWI. These are only a couple stories, there are many that speak of the powerful impact RWI has on real people, right here, in Minnesota.
Please join us this Monday, August 22, 2011 at the Monticello Country Club for the Michael Zimanske Golf Tournament. Whether you can golf, volunteer or donate contact Jan Larson, Executive Director of RWI. The Zimanske Family is grateful for your generosity.
Think about how you can be the Heidi of tomorrow. How can you change someone’s life by giving of yourself. We gather together on Monday, swinging a club, buying a hotdog and pop, reflecting on a boy who gave what he had. Michael rose above his circumstances, giving us the confidence to do the same….Be The Change!
Friday, August 5, 2011
Thursday, July 28, 2011
Fortunately, I’m surrounded by the love of family and friends, which includes their children, that makes this difficult time period less of a challenge. Such as the recent lunch date with my best friend’s son celebrating his 21st birthday. It reminded me of how anxious Michael would be for his coming of age party. No doubt Michael would have been a part of the evening festivities alongside his birthday buddy. Happy Birthday, Eric!
Our traditional summer vacation, in season seventeen, was enjoyed a few weeks ago, sparking many “remember when Michael” vacation memories. During that week my niece calling back “Hey whatie” to her boyfriends “Hey Julie” was a reminiscent mantra. The sweet sound blanketed my lonely heart as I recalled Michael’s numerous requests of, “Hey Mom” and my reply of, “Hey what”.
There are the emails and shopping preparations being made for a 16th birthday party for my nephew. At his request, a birthday celebration with his aunts and uncle comes with perfect timing. It is complete joy for me to be one of his party planners in the absence of planning Michael’s 20th birthday event. Happy Birthday, Ryan!
For the past six years celebrating Michael’s birth date, without him physically present, has come with ups and downs. Attempts to honor his special day are made, but often fall short of plans trapped inside unfinished. Despite the complexity it’s important, for many reasons, to still celebrate. I believe we honor Michael’s memory best by looking for every opportunity to experience fun and allow others to fill the empty space. Michael loved a party and he never wanted it to end. It’s one of his legacies.
Happy Birthday, Michael! Until we meet again, the party continues. Be The Change!
Thursday, July 21, 2011
My life has been infinitely altered by Michael, his SIOD diagnosis, treatment courses and markedly the day he died March 10, 2005. There have been countless days of confusion and unknown direction because of it. Although Be The Change was born from that season, its purpose was clear and mapped long before the title became reality.
Be The Change represents the patient family perspective in healthcare using our real life experiences to strengthen relationships and create partnerships with healthcare providers, outside of medical crisis. Be The Change defines the patient-family-provider relationship and sets a course to a patient family perspective view of the provider perspective.
It took me a long time to realize that as a patient and family member, I came into the healthcare environment with a narrow scope. Despite my vast experience I was only considering what medical providers could do for me. Now much more humbly, I consider what we can do together. I wanted healthcare providers to see beyond the diagnosis and see me, Michael, and our family as real people, but was I willing to see them as real people too. It wasn’t until a unique experience with a neurologist did I fully comprehend what that meant.
Michael and I had been waiting over an hour for his neurology follow-up. Finally, the doctor came in apologizing for the long wait and briefly explained he was detained by a pediatric emergency in the hospital. Outside of words, his face communicated this had been a traumatic experience. I offered him a few minutes to regroup but he respectfully declined. The appointment continued but I knew we needed to alter the normal course of our conversation.
I am a “lets talk about our feelings” kind of person so I asked the neurologist, “What do you do when you leave this place after having a really tough day?” Without warning giant tears escaped from his eyes and he said, “I should ask you the same question, what do you do?”
The direction of our relationship changed instantly after that short emotional conversation. We saw each other in a different light and became partners not only in Michael’s healthcare decisions, but in life choices. Because I began to see him more humanly than medically, it gave way for him to do the same. My initial impression of, “I don’t like this doctor very much” changed considerably over the course of time. In the end, this neurologist profoundly impacted the days I had to resign to Michael’s life course.
Here’s the bottom line. We all have the same basic needs, whether you're a doctor or a mother of a sick boy and we are more the same than different. Each of us whether patient, family member or provider requires human understanding layered with compassion and is made vulnerable by medical situations.
Risking emotional connection might lead to a detour, but it's sure to Be The Change!
Friday, July 8, 2011
A rainy summer day my kids would take another look at the spiral notebooks they used the previous school year. I wanted them to decide which pages would be saved and what pages would meet the recycle bin. Left after the data purging was a thinner notebook that still displayed their name, grade and subject. Those leftover notebooks were then stored with hope that the kids could use them again the next school year, which by the way rarely happened. Instead, they usually became the notebooks I used for shopping lists, yearly vacation notes, and recorded Weight Watcher points.
Here are three ways you too can recycle spiral remains taking up space, making them into a helpful medical device for patient family healthcare.
- A recycled spiral notebook is a valuable tool at every medical appointment. It’s perfect for keeping track of current medication including medication changes made during appointments. It’s handy for note taking during appointments, which also provides a running log of information for future reference. A great place for jotting down any questions you think of at home and readily available for the next appointment. Be sure to make your family aware of your medical spiral notebook.
- An additional recycled spiral notebook is helpful for hospitalizations and surgeries. This particular notebook should also contain a list of current medications. It should have emergency contact numbers and valuable information such as insurance phone numbers and location of your living will. It’s the perfect spot to write down questions for hospital medical providers or family members and for taking notes as medical providers provide information. Wonderful place for love notes from family too.
- A recycled spiral notebook is at its best when used as designed, for saving notes. An excellent example, recently shared with me, is to use a notebook for aging parents struggling with memory issues. Writing a note in their special notebook reminds them of the date you were there or of a task that needs to be done or was completed. A simple notebook becomes a tremendous empowering tool that provides peace of mind.
These are just a few suggestions to give patients and family members a green alternative and cost-effective way to store information. I admit it’s not the latest and greatest technology advancement in data storage however; the cost of a spiral notebook can hardly be debated. In just a few weeks we’ll see this affordable item on the cover of every sale ad, many for less than a dollar.
I have two recycled spiral notebooks on my office desk right now. Every time I pull one out I see "Jessica Zimanske Grade 6 English" or "Michael Zimanske Grade 4 Spelling" written on the cover by them. The moment gives pause as I recall their school age faces and the memories held between the covers of those notebooks.
Recycling leftover spiral notebooks has sustainable effects. They are guaranteed to not only enhance your healthcare experiences but memories too. Only potential product warning for recycled spiral notebooks: CAUTION this item may cause you to Be The Change.
Sunday, July 3, 2011
Thursday, June 30, 2011
Theresa is the Founder and Chief Executive Officer for Be The Change, which represents the patient and family perspective in healthcare. She has been married to husband, Donn, for more than 25 years and has two children, Jessica and angel son, Michael.
Theresa brings a honest and realistic approach to family life when surrounded by medical crisis. She has spent most of her life within various healthcare scenarios, which includes her parent’s medical care and end of life experiences, her son’s rare disease diagnosis and death, and even her own breast cancer. Theresa speaks and writes about the value of the human experience in the medical environment.
You are sure to be encouraged and inspired by her story of hope and renewal, based upon the life of a boy named Michael, who changed everything.
Visit Be The Change website: http://bethechangemn.com
Be The Change Contributor
As Michael’s sister, Jessica represents the sibling perspective in health care. She grew up in a family focused on doctor appointments, blood draws and surgeries, but despite the medical concerns that permeated her home life, Jessica was striving to live the life of the average teenager, while learning at an early age that health and life is fragile.
She fully supports the patient and family perspective in health care because as a sister of a terminally ill child, she understands how siblings can be forgotten within the health care system.
Now in her 20s, Jessica works full time as a marketing professional for a large Twin Cities company, while also working as a freelance writer for several national publications. She lives in Minneapolis, Minn.
Visit Jessica’s blog: http://jessicazimanske.blogspot.com
Thursday, June 23, 2011
This quote, etched on a wooden plaque stood solo on a shelf at a B&B I stayed at recently. I repeated it multiple times, slower each time contemplating is that true? Could anyone of us, mainly me of course, really do that?
My adult life began with preconceived notions and lofty ideas compiled neatly in my mind. Then real life happened. Neat and orderly got messy expanding my once narrow view. Dreams were altered, planned courses scattered, forcing another look at my notions and ideas. Thankfully this time, with a more humble view I sought the answer we all wonder, “What was I created to be?”
Driving home from the first “official” Be The Change presentation and replaying the event in my mind, I realized the answer to that big question. My personal medical life experiences were meant to be shared and to educate. These experiences, both challenging and rewarding at the same time, have taken my breath away. Often made me uncertain of what will come next. However, what came was a hopeful and peaceful trust in what is to be will be. Not since my marriage and the birth of my children have I ever been so sure of something I was created to do, as I was after that car ride home.
In my opinion, George Eliot’s words are correct. It really is never too late to become what you might have been. To become what you were created to be from life experience that draws a new picture and unveils bigger dreams.
Think big, imagine without limit and Be The Change!
Friday, June 10, 2011
She grew up less than a mile away from my family farm; hers just south down the gravel road. We were friends in high school. Hung out with the same crowd and drove up and down the same main street. After high school we went our separate ways, each taking our own path. A year later we began a conversation at a summer party, which has never ended. With the glow of a bonfire, friendship was renewed and two best friends were made.
Even though both of us worked “in the cities” we rented the lower level of a house located in our home town on Fifth Street and made life long friends with the couple upstairs. We bought a great big couch, kept only Mountain Dew and yogurt in the fridge and ate popcorn for supper. On Saturdays we shopped bargains at the local stores, read magazine stories to each other, polished our nails at the kitchen table and laughed and laughed and laughed.
Our roommate status changed in 1985 when we each got married, just two months apart. Two husbands became good friends and five children grew up together like brothers and sisters. Our families have shared holidays, birthdays, cabin trips, county fairs, and simple daily occurrences. Her life and mine have always been parallel, each experiencing the same events or similar feelings about the same time. Together, we have embraced life’s highs and lows as much in person as on the phone.
My best friend is the Godmother of my son Michael. A role that expanded into clinical conversations and hospital room visits. During uncertain times she reminded me who I was, where I came from and who I was created to be. On the days I felt lost or confused, she put me back on course. A friend gracefully appointed.
As best friends we share thousands of memories and dreams with an assurance of many more to come. We even share the same birth year with birthday’s only weeks apart. So, Happy Birthday girlfriend! You have been and continue to be the change.
Thank you for encouraging me and everyone around you to Be The Change!
Saturday, May 28, 2011
The statement, “where has the time gone,” is cliché at best, yet enormously truthful. As a teenager I remember thinking time was plentiful, sometimes even ticking by at a slow pace depending on the event ahead. Joining a new club this month, I’m especially aware of the rapid speed of time in more life lived behind me than what might possibly lie ahead. Despite the awareness, it’s still of very little concern to me.
My age has never been an issue for me. In fact, most of the time my husband remembers my age before I am able to recount the exact number. I believe how you feel on the inside and conduct your life on the outside doesn’t have to match your real age, giving minimal value to the number.
What I do value is the countless number of outrageous blessings in those years. Some of mine are; growing up in a simple farm home abundant with life lessons that resonate in my current life. Parents I admire and seven siblings I can’t imagine life without. Friends from high school turned into a marriage graced by two amazing children, making a family. A circle of life completed by trusted friends and devoted extended family loving me no matter what. It’s a plethora of blessings that brings me to my knees in humble awe.
It’s only fair to say, there has been disappointments, sad days, even a few “why me,” but they have been matched by miracles that lack worldly description and healing found only in the divine.
It’s true, it was my birthday and now I’m 50 years old! Probably won't forget how old I am this year, unless I hear the song “Dancing Queen.” Then age becomes irrelevant and with arms crisscrossing in the air, we give any day reason to celebrate.
So for the next three hundred sixty four days until my next birthday, Be The Change!
Friday, May 20, 2011
Spring has a way of ushering in change. The season changes the look of trees, grass and plants into something new from the unsightly picture of dormancy. It holds graduations, college to home re-locations and summer activities, which can change disciplined polished routines into drive-thru dinners and later than usual bedtimes.
Change is a constant part of life whether we like it or not. Anything from simple changes found in the monthly turn of the calendar to the more complex like life altering changes due to illness. Each offering an opportunity to redefine priorities based on a broad spectrum of minor to major changes involved with every changed season.
Another drastic change is with social media like Facebook, which is a change that didn’t come easy for me. My first communication language is verbal words. Patients.about.com suggests we can even use social media to choose a doctor. Now that’s a change! It's fair to say, doing necessary research in the comfort of your home does lend an ease to fact finding tasks and allows the required time to make critical decisions in a relaxed environment.
Permitting change to make you or your circumstances better than the day before directs hope to cover anxiety that sometimes exits because of change. Whether it's a new month on the calendar, a changing season, or a health concern that leads to social media for answers.
Change can be good, lending a fresh perspective to change our view; for instance the look of yellow daffodils blooming in the middle of a concrete jungle. The odd occurrence helps you realize change makes other things possible.
“Like” Be The Change on Facebook…. Be The Change!
Monday, May 16, 2011
Friday, May 6, 2011
My relationship with my one and only dramatically shifted when I was nineteen. As my Mom battled cancer, I began to comprehend and appreciate her role in my life in a renewed way. She died when I was barely twenty seven and now, I’m close to living more of my life without her than with her.
There isn’t a day I’m not reminded of my Mom’s gentle way and the powerful impressions they left. I recall the extreme gratitude in her thank you. I remember her small hands washing clothes, ironing or at the sewing machine. Her prideful face as she canned fresh vegetables out of her garden. The smile she gave requesting a little 7-up on special occasions and the rhythmic way she would follow my Dad on the dance floor.
My Mom was self-less, hard working, faithful and always, always kind. She molded my thoughts and instilled values in me that are permanent threads woven into my non-tangible quilt. She showed me what real faith is and that it is possible to endure. Her spirit simplified the complicated aspects of unconditional love, all of which expanded our relationship beyond typical boundaries.
My Mom’s commitment to family speaks in the shadows of Be The Change. This blog entry is dedicated to my Mom and the others whose home isn’t allowing cards or phone calls. In honor of them this Mothers Day weekend, call your one and only her special name. Have a conversation between two hearts only the two of you know the words.
It becomes a story, which lasts forever. Might even Be The Change.
Monday, May 2, 2011
Everyone has a story about airplane travel. Anything from awkward barefoot security encounters, the missed connecting flight to long waits for luggage. Including highlights such as aching knees from bumping into the seat in front of you or the intentional lean to the right because of the sleepy stranger seated at your left.
Whatever the tolerated situation maybe most airline passengers don’t endure what the physically and medically challenged traveler does. A travel check list is long enough without the need to add wheelchair or ventilator as must have items.
Traveler, Carrie Salberg can not be without certain medical items such as those two, due to her muscular dystrophy diagnosis. A Star Tribune investigators article says in January, aboard a return flight to Minneapolis from New Orleans, Carrie Salberg was asked to get off the plane. A battery brought on board by her nurse, which had a certificate of compliance, caused serious inconveniences. Things were done correctly, yet still not enough. Interesting to note, her flight to New Orleans from Minneapolis went without issue, even included a free first class upgrade.
In a small way, I can identify with medically challenged passengers like Carrie Salberg. Although only traveling once with Michael by airplane during his fragile medical years, I understand the complexity involved with adding critical details. Along with the normal vacation preparations others have, that one trip required extra phone calls, particular doctor appointments and many additional considerations other travelers don’t have.
Michael received air travel approval from his medical team but it came with a promise to have a medical letter with us at all times and act in accordance to it, if necessary. The letter explained Michael’s rare disease and said should he experience stroke symptoms in-flight, parents will alert flight crew of an emergency medical situation. Airplane will be expected to land immediately. Right before our trip I saw myself banging on the cockpit door yelling, “Land this plane, STAT!” Fortunately, it was only a dream.
Even something normal like attending a school field trip required extra time and details to assure Michael’s special wheelchair needs were accommodated. It’s surprising the number of locations, which are not easily “handicap accessible” despite the signs suggesting otherwise.
Be The Change asks you to demonstrate large doses of patience and tolerance for physically and medically challenged travelers. Let’s not add to an already extensive list of concerns. Be the one who holds the door in assistance and offers a helpful hand. Always give a smile instead of a stare and Be The Change!
Friday, April 22, 2011
Donn reads the Star Tribune paper copy cover to cover, daily. He remembers high school friend’s birthdays but can not recall the one thing he needed at Menards without his trusty yellow post-it notes. He dislikes hot weather but absolutely loves the hot sunny beach of a winter Mexico vacation. Mosquitoes and other bugs flying around his head make him feel “buggy” so he’s often found swatting them with his newspaper. Without question, he drives the cleanest car in town and makes certain I do too.
He has been my best friend for over thirty five years, which includes twenty five years of marriage. I assume his many friends would agree he’s not only kind but one of the friendliest guys you will ever meet. As a son and brother, he connects to his family with an open heart full of love and commitment. Since the mid 1970’s that abundant love overflows onto me, creating a bond that instantly made them my family too.
Donn and I have shared more life experiences together than apart. No matter what, Donn’s loyalty is constant. When my Mom needed a wig during cancer treatment, it was Donn that drove us to Dayton’s in Southdale. At a social event, Donn will always find the time to chat with old neighbors about all the fun they had growing up near Lonsdale. He’s the kind of person who loves when someone asks him to help with a project. Sure to arrive with a trunk full of things he has to make the job easier.
Donn cries at weddings and screams “like a girl” watching a scary movie but is embarrassed that he does. He’s the type of husband that never leaves without kissing me goodbye. Everyday he comes home from work with a smile on his face. He is a hopeful optimist, never giving up on me or our family even though some days were pretty rough. He supports me one hundred percent even the day I came home from work and said “I’m quitting my fulltime job to “Be The Change”.
In his role as Dad, Donn gives me a glimpse of heaven each time I witness the depth of his love for our two children. In addition to saying the words I love you, he demonstrates love in action. Teachable moments he has with Jessica, makes me wish I could stop time. The silent grief he carries for angel Michael makes him a hero. My memories of Michael and Donn together lend moments of perfection.
Donn helped his parents wash windows a couple of days ago. In an email note of thanks his Mom said, “Through our windows, the world looks better.” Her words reminded me of looking out the windows of Michael’s hospital rooms, most of them water spotted and dirty. Never allowing a clear view of the world outside, something each of us longed for. It’s where I learned random acts of kindness go beyond the act. They provide a fresh gaze with a new hopeful view through any window. It did then and it does now.
Thanks Donn, for giving us a better look at the world through clear windows of your love, kindness and respect for life. People like you inspire others to Be The Change!
Sunday, April 17, 2011
Prompted by online review of doctors has some healthcare providers adding another form to sign. In addition to an already overwhelming stack of paper work requiring signatures, patients must be cautious of a waiver called “mutual agreement to maintain privacy.” This kind of agreement can be categorized as a patient “gag order” and, according to Angie’s list, its use is relatively new. Angie’s list offers an online collection of consumers real-life experiences designed to help members find high quality service companies and health care professionals.
A patient can expect to sign a few forms such as release of medical information or HIPAA Privacy and it’s no secret many patients don’t read the myriad of paperwork handed to them. Along with that concern is; are patients provided a proper atmosphere or time frame to read and understand lengthy important forms?
Now adding to those issues is a type of “gag order” waiver, which apparently can be confused with a HIPPA form. This should definitely make patients take another look at what they’re putting their signature on. As consumers we should never hesitate to ask questions or feel pressured to sign something we don’t completely understand especially when it involves our healthcare. If necessary, ask for more time to read forms or request your healthcare provider to explain what the forms really mean to you as a patient.
In a respectful relationship between patient and provider there should always be time to discuss concerns whether it’s about paperwork, healthcare or other. A healthcare provider giving quality medical service should be confident in patient word of mouth acting as the best marketing tool available, having no desire to sign that away. In a patient-provider team, open dialogue is critical for obtaining the level of trust exceptional healthcare demands.
Be The Change agrees with Angie Hicks, founder of Angie's list, “If a doctor is asking you to sign this, they are not trusting you, so maybe you shouldn’t trust them.”
Next time you have a few forms to sign read them first…. Be The Change!
Friday, April 8, 2011
I have seven wonderful brothers and sisters. Together as siblings we have weathered many storms; Mom’s cancer years, Dad’s sudden massive heart attack and Michael’s rare disease.
I love them both collectively and individually and share unique relationships with each of them, especially with my three sisters. As women and mothers, we travel a road distinct from my brothers. We recognize features in each other that nurture the treasured place we come from. Others comment about the similarities we have, which are proud moments for me.
The last few years, I've shared a weekend with my sisters at an exclusive B&B up north. (That's what I call my youngest sister’s home!) This year, four turned into three because my oldest sister was missing. Ovarian cancer treatment currently limits her choices, but a faithful and hopeful optimism continues, leading her towards a healthy future.
I struggled with whether or not we should do sisters weekend this spring since all of my sisters weren’t able to partake. Should we still go regardless of my oldest sister’s plea to go with out her? This particular week was picked months ago for an opportunity to watch our nephew’s high school play performance. We certainly didn’t want to disappoint him in having “the aunties” from his Mom’s side in the audience.
During my decision making process I began to recall times when I encouraged my siblings to do things without me during some of our personal healthcare circumstances. That actually helped me make my final decision.
We don’t always get to choose what we do, or if it will be together or apart. There are seasons each of us will walk a narrow path purposely built only wide enough for one. In life’s occasions one might be missing, either temporarily or permanently. I believe the best way to honor anyone missing is to live life joyfully and make decisions that best represents them. Joy isn’t simply defined by what is, but in what was and in anticipating what is to come.
In grief, one is acutely aware of something missing and eventually learns to adjust accordingly. In grieving my parent’s death and then my son Michael’s, I have experienced the importance of making choices filled with life giving energy. My parents often said, no matter what, with or without them, we are a family. They showed us that in standing together, we lighten the load of life’s burdens. Now I see my siblings demonstrate that philosophy, respecting the words of wisdom passed down by two people we adore.
I just returned home from my northern retreat with my two sisters. We had a good time but certainly aware of one sister missing. In our hearts, she came with us. We look forward to the next time we are all together to Be The Change!
Friday, April 1, 2011
Real reform begs each of us, from legislators to healthcare consumers, to have a renewed focus on where our money is going. We must consider how much bang we get for our buck not only in the quality our dollar purchases in healthcare, but also in terms of insurance reimbursement standards.
The days are over when consumers only concern is insurance out of pocket costs in comparison to their premiums. Consumers have a type of vested interest in the ways medical insurance administration act as wise stewards with our healthcare dollars, which translates into available healthcare options and overall costs. It all goes hand in hand.
Be The Change supports financial disclosure and bidding competition for health plans. It’s necessary to build new pathways for some much needed change in that healthcare arena. Corporate profit can not continue to dictate the choices patients and families must then struggle to cope with, especially in the case of chronic and rare diseases.
Cub or Rainbow isn’t the only place we need to be wise consumers. Insurance choices such as a Health Savings Account and other similar plans is creating a product awareness that puts much needed focus on the cost of healthcare services rendered in relation to insurance coverage. Health insurance companies play a big role in the healthcare environment and need to reform along with everyone else.
Ask your clinic, hospital, pharmacy and even your insurance company about the varying competitive costs of services and reimbursement rates. Information is powerful therefore shop around, get more equipped to make wise consumer decisions and Be The Change!