Using Grief as an Inspiration to Help Others

One of the sweetest people I have ever met is Mary Stansell.  Mary was a coworker who worked in a respite care program for elderly people with memory loss, from Alzheimer’s disease and Dementia.  Mary did not just work her 8am to 5pm shift.  She left her house at 6am to drive across town to pick up a few of the program participants whose loved one was having trouble getting to the program.  On the weekends, she provided free respite care in her home for some families who were struggling.  At the end of the day, if a family caregiver was late leaving work, she would wait, on her own time, until they arrived and not charge the late fee.  And she never complained.

See, Mary is a tough cookie.  She left her southern home on a Greyhound bus.  With the clothes she could fit in her suitcase, along with her gun, and her four young children.  She escaped violence and fear for hope and peace in California.  Along the way, she met and married the love of her life, Charles.  He was an intelligent, educated man, who she loved with all of her heart.  They enjoyed dancing, laughing, loving, and living life together.  Then one day, Charles was diagnosed with Alzheimer’s disease, and the slow, declining abilities and memory loss would follow.

But it was not Mary’s way to grieve over it.  And, in the plan for her husband’s care as time and the disease progresses, she was determined to be his primary caregiver.  She would do whatever she had to do to care for him.  So, she found work in a respite care program where Charles could attend.  She was able to keep him close while she was at work. 

She learned everything she could about the disease, and used her knowledge to help other families dealing with memory loss of a loved one.  She consoled the wife whose husband no longer recognized her face.  The son who feared his father had forgotten a wife and mother who had passed.  The daughter whose mother forgot more each day.  The caregivers who arduously provide care to a loved one in addition to working a full-time job.  Mary did these things outside of her work.  On her own time.  She lived the disease.  She loved those who fell victim to it, and she fought in the trenches alongside those who knew her pain. 

Grief from trauma, whether it is after the passing of a loved one from a terminal illness, abuse, neglect, or other experience, a great healer is volunteering to help those who are where you have been.  Some of the best and most effective volunteers are those who can empathize with people in the trenches today.  You know their fear, their hopes, their sadness, and most importantly their needs.  

We all have experienced trauma…loss of a loved one to terminal illness, aging, or accident.  Some have experienced bad childhoods, disabilities, academic struggles, and more.  Find an organization that serves a need for those today where you have been before. 

Make YOUR difference in the world…Volunteer!

Alzheimer’s Association

Full Circle 

Good Grief Center – 20 Tips for Bereavement Support

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Why Advocacy Counts and Makes a Difference


IF ONE MORE IGNORANT PERSON tells me that they have a cure for Type1 Diabetes, I am really going to scream!!! While shopping, I was discussing health and wellness with a holistic healer.  For whatever reason, when I mentioned my brother engages in a wellness regimen to manage his illness, she told me that there was a cure!  When I said, “he is TYPE1 – Insulin Dependent, NOT Type2,” she assured me I was wrong and that he really does not need insulin but diet and exercise.  AS IF I do not know what I am talking about, having personally dealt with the disease for 10 years.

In an earlier post, When a Cause Hits Home – Volunteering with a Personal Purpose, I described my brother’s struggle with Type1 Diabetes.  An autoimmune disease, his life DEPENDS on daily doses of insulin and blood sugar measurements through finger sticks.  His pancreas DOES NOT function.  He did not acquire diabetes through diet or any behavior of his own.  Doctors, meaning Endocrinologists, believe that an environmental trigger stopped his pancreas from working, and he was genetically predisposed to Type1.  He has never been obese or overweight, in fact, at 6’0, he struggles to maintain a weight over 140 lbs.  Anyone who would suggest he STOP using insulin very ignorant about the disease. 

Sadly, this is not the first person to tell me that my Type1 brother does not need insulin to survive. Maybe these people would like to see what happened when he had a bad batch of insulin. He ended up in ICU for 5 days and nearly died. 

My rant has a point.  Advocacy and education about YOUR cause is vital to the public receiving information about the issue at hand.  Potential donors, volunteers, and supporters MUST know the FACTS and MYTHS about issues, such as Type1.  Otherwise, they will not understand the urgency families are experiencing as everyday 80 more people are diagnosed with this life threatening disease.   Everything on the outside seems fine, but inside the lives of these families there is struggle, fear, depression, anxiety, and a glimmer of hope…that one day…their loved one will be cured.  

Advocating and educating the public and other stakeholders does not mean you have to march on Washington and storm the state house.  It can be as simple as making a YouTube video about your personal experience, writing a guest blog for an organization working on your cause, sharing information through social media contacts to raise awareness, and correcting ignorant people whose suggestions could harm a loved one, should you follow the advice.

JDRF, the leading organization fighting for a cure for Type1 has done a great job in encouraging families to share their personal experiences with the disease on YouTube.  In turn, these videos are shared on Twitter and other social media platforms.  These experiences are personal, inspire others to action, and provide a face for the disease.  You can make a difference through advocacy and education for your cause.  Get involved today!

How are you advocating for YOUR cause?  Please share.  Make YOUR difference in the world…Volunteer!

JDRF

Diabetes Mine

American Diabetes Association

Microvolunteering – Evolution of the One-Time Volunteer Project

Community Service Blitz - Adopt a Senior Project Volunteers

Community Service Blitz – Adopt a Senior Project Volunteers

When I started my first full-time job after college, I managed a neighborhood based volunteer program for a local government entity.  The purpose of the program was to help neighbors organize in groups to offer assistance to elderly neighbors.  Early on, this program required an ongoing time commitment by neighborhood volunteers.

Although I had experience recruiting and coordinating volunteers on political campaigns, the nature of the service was short-term.  Not to mention, I was not an ongoing volunteer, because my sister and I enjoyed volunteering in a variety of one-time volunteer projects for multiple organizations.  In spite of this, I did not understand the needs, interests, and time commitments of my potential volunteers.  I was asking others to do what I was not committed to do myself.  As a result, I probably lost the opportunity for several months to utilize available human capital in making a difference in our community.

When a colleague and I decided to launch a joint project between our programs, this changed everything.  We launched the “Adopt-A-Senior” program in 2002, featuring one-time projects for at-risk teens to serve seniors.  For the first project, we painted the home of a grandmother who was raising three young grandchildren alone.  This was the first of many to follow.

As soon as my newsletter featuring the project was distributed, I received an influx of phone calls and emails from individuals and service groups interested in getting involved.  So, I offered two types of volunteer opportunities, the ongoing effort and the one-time projects.  By far, the one-time project was the most popular and successful.  Thousands of volunteers each year participated in these events, and many returned for our seasonal projects or for events designed for a specific volunteer group.  I lead one of the most successful, awarded, reported, and popular programs in the entire organization.

This one-time project idea was not welcome by all.  I had one hell of a time trying to convince my supervisor of its merits.  Although it was clear, by volunteer participation numbers, that the one-time project was in demand, I was criticized for the exposure of the one-time project and not the ongoing effort.  This is a classic case in the industry to consider what you THINK is best rather than what IS best.  People are extremely busy with work, family, and other commitments, so rewarding their desire to volunteer is important.  Making it fun and rewarding is even better, it is a win-win.

Listening and responding to the needs and interests of volunteers and how THEIR time and skills fits into the need of your organization will maximize the use of human capital for your organization. Doing so will increase volunteer retention and recruitment.  Your volunteer pool will expand and diversify.  Service hours will increase.  Even if your program DEPENDS on ongoing volunteers, find needs that can be fulfilled on a one-time basis.  If you are a nonprofit, I guarantee you will find a need.

If you are seeking volunteer opportunities, join those organizations who are interested in YOUR volunteer objectives.  There are many opportunities available with great organizations that will value your service and maximize your objectives.

What one-time projects are you participating in?  Make YOUR difference in the world…Volunteer!

Volunteermatch – 101 Volunteer Recruitment Secrets

Points of Light Foundation – Volunteering 20 Minutes at a Time

Breaking through Barriers – Volunteering for Disabled Recreation

“Dad, when I’m running, it feels like I am not handicapped.”

Team Hoyt Bronze Statue, Boston, MA

I am an avid runner.  I love everything about participating in a race.  I love the rigor and exhaustion of training, the crowd at the start line, the sense of accomplishment at the finish.  I enjoy picking up my race packet and posting my bib in competition with my spouse, on the wall.  At the end of a race, my physical and mental rewards are indescribable.  There is nothing else in life I do that makes me feel more alive.

One of my favorite stories is that of Team Hoyt.  This father and son duo, Dick and Rick, is a Boston Marathon legend having finished 31 Boston Marathon races.  Rick, who has Cerebral Palsy, is quadriplegic, and cannot walk or talk on his own.  However, his parents insisted on immersing Rick in activities for him to enjoy a life as normal as possible.  When a group of engineers at Tufts University built a computer that Rick could use through a series of head taps to communicate, his first words were “Go Bruins,” in support of his hometown team competing for the Stanley Cup.

When Rick was 13, he told his dad that he wanted to participate in a five-mile run for a paralyzed Lacrosse player.  So, Dick pushed Rick in his wheel chair and finished the race second to last.  Rick typed a message to his father, “Dad, when I’m running, it feels like I am not handicapped.”  Since then, Team Hoyt embarked on a racing journey to include over 1,000 distance races and triathlons.  They have run across the country, participated in Iron Man competitions, and are the face of the Boston Marathon that is complete with a bronze statue of Team Hoyt.

Recreational activities are vital to the social, psychological, and developmental well-being of disabled children, teens, and adults.  The benefits are immense, from developing self-confidence and language skills, to social interaction and trauma therapy.  Everyday volunteers are helping developmentally disabled people participate in activities previously unheard of, to experience the exhilaration enjoyed by non-disabled people.

Martha, a previous member of my staff, was disabled due to polio.  She had difficulty walking, and was aided by crutches.  When, as a teenager, her family visited Yosemite National Park, she was told to stay home because she could not walk very far.  So, when the Access Leisure Program in our department hosted a Yosemite hike for disabled adults, staff encouraged Martha to go.  She went, she hiked, and she returned the next week beaming with confidence and a sense of accomplishment.

Organizations that provide recreational activities and therapy are typically non-profit and vigorously compete for funding.  Services depend on the contributions of volunteers, who enable those with disabilities to break through barriers and enjoy the exhilaration of sports and recreation. Organizations such as Kids and Horses in Minden, NV and Access Leisure in Sacramento, CA are two of my favorites, but there are MANY more in need of help.  Find what is available in your community and make a difference!

How are you volunteering to help people with disabilities? Make YOUR difference in the world…Volunteer!

Wounded Warrior Project

Kids and Horses

Access Leisure

Network for Good

09.24.2008 – Fighting Cancer for Those Who Cannot

betty2

Betty Seise, My “Second Mom”

Once in a lifetime someone makes a difference in your life.  I do not mean my parents, or my husband, my childhood best friend, or even my child.  Someone who takes an interest in your well-being for no reason except that they really give a crap about your future.  That was my mentor, and “second mom,” Betty Seise.

When I was a teenager, I worked as Betty’s assistant for a company where she was the Controller.  She guided and directed me through school, life decisions, and choosing a future.  She supported me when I was right, told me the truth when I was wrong, and encouraged me to the light when it was dark.  After her career advanced and I went on to college, Betty remained close by.  She was always interested in what I was doing with my life.  When I graduated from school, she told me, “The world is your oyster,” and I was inspired by that.

Betty was a champ.  She had her shares of ups and downs, but she was a self-made woman, a mom, a daughter, a wife, a leader, and a self-proclaimed life-long student.  She was charitable, helped others, and when you told her something you knew she was listening.

So, you can imagine my response when in the summer of 2008 I found out that she had cancer.  Stage 4, Non-Hodgkin’s Lymphoma, to be exact.  I began researching everything I could find on the disease, and found that 5 in 10 people go into remission post chemotherapy and radiation.  I was 100% confident she would be okay.  After all, Betty was a fighter. 51 years old, in impeccable shape, a healthy eater, and a holistic healer.  She was educated and well-read, so if anyone had a chance for survival…it was her.

Over the next ten weeks, the updates on Betty’s health were up and down.  Due to the cancer in her lymph nodes, large amounts of lymph fluid accumulated in her abdomen and under her arms.  Doctors had to surgically extract 1.8 liters here, 1.5 liters there, and it was excruciatingly painful for her.  She had to maintain iron levels in order to receive the chemotherapy treatments that were imperative to her survival.  She spent days in the hospital, lost a great deal of weight, could not eat, could hardly sleep, and eventually could not talk.  One day, her condition improved.  We had hope!  Then on a Monday night, I received the news that she was again hospitalized and was not expected to make it.

09.24.2008 is the day that Betty, my mentor, my second-mom, lost her battle to cancer.  And I started the fight.  4 months and 1 day before I was married.  Two years and one week before my daughter was born.  One day before her son turned 22.  One year before her oldest son earned his Master’s Degree.  And my life, like many others, has never been the same.

Betty is not the only one.  We all know somebody who has won, lost, or is still fighting the battle.  There is something that we can do to help.  All organizations that provide prevention to support for Cancer patients and their families need volunteers.  In fact, many rely on volunteer support to serve those in need.  Contact any hospital, cancer treatment center, hospice, American Cancer Society, or Leukemia and Lymphoma society and find out how you can help.  Or, volunteer to be a bone marrow donor. ALL of these organizations need volunteers, so JOIN THE FIGHT!

How are you volunteering to fight cancer?  Please share.  Make YOUR difference in the world…Volunteer!

Leukemia and Lymphoma Society

American Cancer Society

Delete Blood Cancer – Bone Marrow Registry

Hospice Foundation of America

UC Davis Hospice Volunteer Program

Faith-Based Volunteering – With a Spiritual Purpose

There is an abundance of good work that takes place in our communities, and it might not be obvious or well-known.  It is the work of volunteers through faith-based organizations of every denomination.  The religious purpose of volunteering adheres to a higher purpose, and many in the faith-based community aspire to this principle.  Faith-based organizations, such as the Salvation Army, are also typically organized in their service capacity, have a unique connection to or understanding of a certain need, enjoy access to a lot of human capital, and provide an excellent opportunity to serve those in need.

When I was a new volunteer coordinator for a public agency, I was discouraged from recruiting faith-based groups to my program.  Having been a member of a church for my entire life, it seemed plausible because of the existing service component in the faith-based community.  Besides, it seemed a little sketchy to me working on the public sector side of things.  However, as my program expanded and earned media, volunteers from all over town joined the team.  Faith-based groups from every population were interested in my volunteer program.  I could not turn them down.

South Natomas Caring Neighborhood - Max and Virgie Villavert (2)

Max and Virgie Villavert

One of my favorite groups included a Filipino American Church.  The two amazing service leaders were Max and Virgie Villavert.  They were the most sincere, heart-felt, volunteers who really wanted to make a difference.  Max and Virgie spent Friday nights hosting a teen program for neighborhood youth as an alternative for fun, and at some activities had around 100 kids in attendance.  As volunteers for my program, they were constantly seeking out elderly neighbors in need and going the extra distance to help out.  Max and Virgie did not expect anything in return except the opportunity to offer a helping hand.

Over the years, I have had the opportunity to work with a variety of faith-based teams on one-time volunteer projects as well as ongoing endeavors.  These groups provide a unique opportunity to volunteer, as members include all backgrounds.  Some of these groups have the ability to reach individuals in their communities that will not respond to offers of assistance from outsiders.  Others have a sheer volume of human capital through their numbers. They certainly make the difference.

If you are a member of a faith-based organization, or if you live near a faith-based organization, contact leaders and find out what work they are doing in the community.  Faith-based organizations in my community do anything from operate a food closet and homeless shelter for women and children, to collecting in-kind donations of needed materials for a cancer center and provide free employment services.  Through my church, my family contributes monthly donations to three local nonprofit organizations, and we have worked with youth in building life skills and personal development among other things.  At the end of the day it does not matter what you believe, but what you do to help others that counts.

What is your experience with faith-based volunteering?  Please share.  Make YOUR difference in the world…Volunteer!

Salvation Army 

Mormon.org – Values and Helping Others

Mary House

Sacramento Loaves and Fishes

Catholic Charities

 

 

When a Cause Hits Home – Volunteering with a Personal Purpose

When my brother AJ was a teenager, he wanted to buy a new guitar. Not just ANY guitar, an expensive one.  He counted the earnings from his part-time job, earned money doing odd jobs, and still came up short.  When all else failed, he suggested selling his pancreas on the black market!  That may sound hubris and odd to anyone who is NOT a teenager, or Type 1, but his pancreas does not work.  See, he has Type 1 Diabetes, and only a cure will make the difference.

Today, AJ turns 25 years old.  When he was diagnosed with T1D in 2003, experts believed there would be a cure by the time he was in his late 20s.  Now that he is officially at the midpoint, and there is not a cure in sight, fighting harder is my family’s only choice.

Ten years ago, AJ, an eagle scout, was at camp for a week in the wilderness.  On the second day, he became violently ill while replenishing his fluids with Gatorade.  By Saturday morning, when he came home, he had physically dropped over 20 lbs.  YES, 20 lbs.  In the middle of the night, he was so sick and his heart was beating so hard that he told my parents he thought he was dying.  Living in the country, they rushed him to the hospital.  Upon arrival he had lost vision and could not walk on his own.  When his blood sugar was 800 mg/dL (normal is 90-130mg/dL0) and his blood pressure was severe, he was diagnosed with Type 1 Diabetes.  At 5’8, he was 88 lbs.

That was the beginning. His week-long stay in ICU included IVs, needle sticks, finger pokes, blood sugar measuring, and a completely new eating lifestyle.  As a teenager, his active endocrine system produced emotional highs and lows while coping with the physical effects of T1D as well as the emotional impact.  While getting his blood sugar under control, he would become very sick for hours.  If his sugar was low in the morning, he would not wake up…which extended the time he had gone without eating and compounded the problem.  He had to find his way to manage the disease and live like a teenager.  The worst part of it however, was the realization that his dream of becoming an officer in the U.S. Navy was now not possible.

My dream is that researchers will find a cure for T1D before it is too late for AJ’s kidneys and heart.  My great great grandmother died from T1D in 1913, when not a lot was known about the disease, so we have come a long way.  One of my favorite nonprofits, JDRF (formerly Juvenile Diabetes Research Foundation) sponsors events all over the world to raise money for researching a cure.  My local chapter has volunteer opportunities in my area, from working in their office or on an event to serving on the board and soliciting donations.  And there are many more ways ANYONE can make a difference.

Are YOU supporting a cause close to your heart?  Please share.  Make YOUR difference in the World…Volunteer!

Thank you, Shannon Nordmeyer for sharing your personal video about T1D!

JDRF

JDRF – Northern California Inland Chapter

JDRF Volunteer – Get Involved

JDRF NorCal – Get Involved

JDFR NorNV – Get Involved