“Hi my name is Tricia and I'm going to be your nurse today...” In March of 2014, the introduction I’d spoken many times over my past 20 years as a Registered Nurse changed my life forever. I met Tricia Somers, a 45-year-old single mother, who was recovering from a minor surgical procedure. Tricia Somers (yes, same name as mine, same spelling, same initials T.S.) was diagnosed in October 2013 with a rare form of liver cancer. Initially, doctors thought the cancer would progress slowly and simply have to be monitored. By the time I met Tricia, she was experiencing severe abdominal pain and knew that her disease was quickly changing. Throughout my evening of caring for Tricia, we talked about her 8-year-old son Wesley. It was very obvious to me that Tricia loved her son very much and being away from him was difficult. Tricia was hospitalized for 3 weeks during that stay. I was never assigned to her again, however, I visited her every time I worked, just to check in on her and say hello. On the day of her discharge, I walked in to say goodbye. The mood of the room was very solemn. A social worker sat quietly beside Trish. I apologized for interrupting what seemed to be a very serious discussion. Trish assured me that it was ok and she was glad I had stopped. "The results came back from the biopsy and the cancer has spread... it's terminal.” My heart sank for her. I hugged her, told her how truly sorry I was and that I’d keep her in my prayers, and turned towards the door. Trish stopped me, "I'm really glad you stopped in, I was afraid I would not see you again and I have something I need to ask you. If I die, will you and your husband take my son, and raise him?" I think my heart literally stopped at that moment. I was speechless. Still in shock, I encouraged Trish to take some time to think through her options, and maybe consult with an attorney. We hugged again, parted ways, and never exchanged a phone number, email or anything. But I knew I'd see her again. t’s been 8 months since I met Tricia Somers for the first time. On May 17, 2014 she and Wesley came to live with our family. I feel as though we lived a lifetime in the 5 months she lived with us. We have so many wonderful memories to treasure. It was certainly not easy adjusting to new family members. For Trish and Wesley, it had always just been the 2 of them, and now they were in a family of 8 people! Thankfully, Trish thrived on the chaos and constant activity! In October, Trish's health really started declining and we both knew our time together was getting short. On October 17th, with the help of our wonderful Hospice care team, the decision was made to transfer Trish so that she would be able to receive round-the-clock nursing and comfort care. We visit her often, but it is not the same. Each time I pass her room here in our home I think she should be in there. Our journey now continues with little Wesley in a whole new way. We are trying to provide comfort and support to a little boy who is losing the most important person in his life. But I believe with my whole heart that God has this whole journey in His plan. think the most important thing I have learned from Trish Somers is to live life to the fullest, each day. She has taught me not to worry and fret over the little stuff. With Trish, the sunshine is a little brighter, the breeze feels extra good on your face, and the sound of the crickets on a warm summer night have never sounded so beautiful. I'm not sure I will ever do my job the same again. Or perhaps, I will show more compassion, more patience, more grace than I ever did before. As we head towards the holiday season this year, I encourage each one of you to take the time to cherish those you love. None of us are promised tomorrow.
I’ve spent much of the last five years supporting women with chronic illness, which has often meant helping people to organize their closets, something that makes a surprisingly big difference.
A clear closet can make every day that little bit easier, which can help with both physical and mental health. It can be an emotional process as throwing out old clothes forces your client to mourn the loss of the life she once had ("one day I'll weigh what I did before this illness took over my body"), or the dreams she had that now seem lost because of illness (“I was looking forward to wearing that on my trip to X but I had to cancel it because I got sick.”).
However, it’s worth it! You’re relieving your client of a huge burden, allowing her to let go of emotions that weigh her down, and on a very practical level you’re removing clutter from her life and making a daily process much easier. Here are 4 simple steps for quick but effective closet clearing for your client:
1. Sort every item in the closet into three piles 'Keep', 'Donate', ‘Trash'. Your client need merely sit on the bed and direct you while you do the physical work. Make sure that the 'Keep' pile includes only clothes that fit and are wearable NOW! If illness causes your client’s weight to fluctuate, pack the seasonal keeps and keeps of different sizes into suitcases or labeled vacuum bags, and put them somewhere away from the closet.
Make sure that very item of clothing going back into the closet is wearable NOW! This means that they’ll no longer be spending energy rummaging through things that don’t fit them, and getting lost in the emotional turmoil this triggers.
2. Use Non-Slip Hangers
Has the closet floor become a graveyard for clothes and the beginning of a mess that resembles a rummage sale? Use slim non-slip hangers to ensure that your good work lasts long after you’re finished organizing.
3. Create Sections
Sort the closet into sections: Skirts, Dresses, Pants, Tops and then sort each section into colors.This will help your closet scan the closet and pick outfits quickly, making the morning closet stop a pleasure.
4. Grab and Go
Keep the items they prefer to wear regularly in the most accessible part of the closet so your client can open the door and immediately pick an outfit with no need to rummage. Put daytime wear at the front and center of the closet and evening wear in the most inconvenient spots.
Remember, this task is a big deal for your client. Approach it with an open heart, a desire to help and a big smile and you’ll find that what first seemed a chore becomes one of the most rewarding things you’ve ever done for someone else.
Lottie supports women with chronic illness to create the life they really want despite their chronic illness at lottieryan.com. In her past life she was a Major Gift’s Senior Fundraising Manager for a major UK charity and over the years has worked with hundreds of volunteers doing all manner of support activities.
We all have the ability to help. I’ve realized that Lori’s Hands volunteers have so much to offer the clients they visit. They can bring energy and warmth into the lives of older adults and people with chronic illnesses. Students have skills and abilities that they can use to assist individuals with essential tasks that they would otherwise be unable to do for themselves. This semester, we have many new volunteers, so I thought I would share some thoughts on how to become the best volunteer possible in your new role with Lori's Hands! For our current volunteers, there are always ways that we can become more effective helpers! What tips do YOU have for our new volunteers? What do you do that makes you an effective member of the Lori's Hands team for our clients? On Empathy Empathy is the ability to understand and share the feelings of another. This is one of the most important characteristics of a volunteer. Many Lori’s Hands may be in a state of vulnerability due to their illnesses. Volunteers must be understanding and caring. We must be able to place ourselves in the shoes of these individuals and think about what type of support they might need. When clients feel that we care and are working to understand their unique situations, they are more likely to open up and connect with us.
On Self-awareness When we are volunteering, we will often encounter individuals who are different from ourselves. They may live differently than we do and they may have different views. When working with people, we need to be aware of our perceptions and how they may affect our ability to help. We must be understanding and accepting towards others. If we notice our views getting in the way of our effectiveness, we should take a step back and reevaluate our approach. On Active Listening In order to help others, we need to listen to them and truly hear what they are saying. Lori’s Hands volunteers may need to ask pertinent questions to their clients in order to understand what they really need. At times, individuals may not be open about their wants and needs. They may feel uncomfortable asking for help and may not realize that our volunteers are more than happy to be of use. Active listening can help to open doors to discover valuable details about what our clients really need. On the Unsaid Lori’s Hands volunteers will be more effective if they not only listen to their clients, but also read between the lines. Effective helpers are sensitive to a client’s body language, social cues, and patterns of behavior. Through being observant of these things, we can better interpret the thoughts and feelings behind them. This may help us to identify changes in our clients and monitor their status throughout the time we are volunteering.
Written by: Noelle Menchini
Noelle is a senior Human Services major, Disabilities Studies minor at the University of Delaware. She has been involved in Lori’s Hands since her sophomore year and has scheduled for two of our clients. She is now the Lori's Hands at UD Communications Chair for the 2014-2015 year. Noelle says that Lori’s Hands has taught her not to underestimate the power that a small act of kindness can have for an individual.
From the moment Madison, my sister, was born she spent countless hours of her young life in and out of doctors offices. Ear infections, asthma, pneumonia, strep throat, thrush, sinus infections, and bronchitis—it was always a new diagnoses, a new course of treatment. But the big picture was constantly being overlooked, why was she always sick? Multiple ear tube implants, tonsil and adenoid extraction, upper and lower endoscopy and there was never an end to the illnesses.
At the age of 7 Madi was diagnosed with Common Variable Immunodeficiency (CVID). Despite its title it really is not a very "common" disease in which the immune system does not function properly to fight infections. As with many diseases, there are options in the course of treatment. Currently Madi receives weekly IgG infusions subcutaneously. This medicine boosts her immune system so she can participate in “normal” daily activities like being in the 7th grade and not get sick by every germ she encounters.
Being a bystander on this journey that started pretty much as soon as Madi was born was often times very difficult. Although I was a child myself, I felt my parents' concern and frustration, which impacted our family. I believe that witnessing my sister's struggles is thereason I decided to go into nursing. It exposed me to the trials and tribulations of coping with chronic illness, and how important caring nurses are not only to the patient but the whole family. As a junior nursing student as University of Delaware I am reassured daily that this was the best decision I ever could have made. I credit my sister for a lot of things in my life, but I thank her everyday for being the reason I decided to become a nurse.
Through my best friend and roommate Sydney Scheiner I was introduced to Lori’s Hands, and specifically Edna and Warren Watt. These two people have been bringing so much joy into my life since Fall Semester of Sophomore year. After I left their house on my first Lori’s Hands visit I knew I would return shortly. Little did I know I would have the opportunity to see them at least every other week and be blessed with all their warmth and love. Lori’s Hands has become one of the most important aspects of my college career and I am honored to be a member of a club filled with so many people who want to make a difference in the lives of others.
Written by: Brianna Hafetz
On December 31st, 2001 I took a pregnancy test. When I looked at the test results and realized that they were positive, I couldn’t believe it. I had a feeling that I was pregnant but I had an even stronger feeling that something wasn’t right. The months went by and I was never able to shake the feeling that something was wrong.
Throughout my pregnancy AJ our first born said that he wanted to name the baby “Ladybug.” Not only did he say that he wanted to name her “Ladybug” but he was also dead set on that fact that the baby I was carrying was going to be a little girl. AJ was not far off in his predictions for many reasons.
When Julia was born we noticed she had a small brown café-au-lait on her left arm. A café-au-lait is a pigmented birthmark and as Julia grew, the number and the size of these café-au-laits increased. They became a freckling of spots, or “polka dots” as Julia calls them, which are all over her body, resembling the meaningful spots that characterize a beautiful ladybug. The random nickname that AJ had wanted to name his baby sister before she was born didn’t seem so random anymore. These café-au-laits are one of the characteristics of Neurofibromatosis.
A day after we brought Julia home from the hospital, I was exhausted. That night my husband and I put Julia down to sleep and I got into bed, with the hopes of dozing off immediately. As I was lying in bed, my husband went to the bathroom. He called me into the bathroom and when I got there I couldn’t believe what I was looking at, the window which was covered in ladybugs.
As time went by little things came up. Julia's systems did not seem to function correctly. She suffered terrible constipation, stomach pain, had horrible gag reflexes, was always getting strange fevers and she was growing at a very slow pace. We kept bringing her to doctors but they kept telling us the same thing. Time after time we were told that she was fine and not to worry.
When Julia was four years old, she had another high fever. When the pediatrician checked her this time, he noticed the café-au-lait spots had multiplied and that she now she had freckling under her arm pits. He immediately referred us to a neurologist and told us he suspected an illness called Neurofibromatosis. He told me not to look it up before we knew if Julia really had it.
After endless doctor’s appointments, Julia was diagnosed with NF1; one of the types of Neurofibromatosis. I’ll never forget the first year after my daughter was diagnosed. I'd wake up every morning and the reality would hit me hard. It felt like a constant slap in the face. I'd remember as I woke up that this was the new reality we lived in. Our life became a new land of uncertainty. I felt as thought we wouldn't be happy again. How would we laugh and enjoy ourselves? I though our lives would forever be veiled by this disorder.
And although our life is different, we've somehow adjusted to this new reality. It's been eight years since Julia's diagnosis. It’s been eight years of ups and downs, of sleepless nights, of non-stop worrying. It’s been eight years of pain that's physical and cuts right through you so deeply because its your child your watching in pain. It's your baby no matter how old she gets.
It has become our mission as a family to fundraise to find a cure to end NF. Since our efforts began, we’ve raised $400,000. We have been on the “Today Show” and have been invited to visit the Obama’s at the White House. The fundraising we've done has given us control over the out of control. We also know that when our children grow up we will be able to look them in the eyes and say we've done everything we can do, that there has been no stone we've left unturned and nothing we wouldn't do to help their sister.
Written by: Laura Perfetti
Laura Perfetti is lucky enough to be married to Anthony for 17 years who helps pack lunches every morning for their 4 kids: AJ (15), Julia (12), Jacqueline (8) and Alex (6). She also teaches 4th grade, chairs a PRIDE committee in her school, but her biggest battle is to end Neurofibromatosis. Laura was elected to the Children's Tumor Foundation Board of Directors in 2012 where she proudly chairs the Community Relations Committee. The Children's Tumor Foundation is currently the leading organization researching neurofibromatosis. For more information visit www.ctf.org
An athlete wins the Tour de France bicycle race after recovering from cancer. An actor becomes a film producer, lobbyist for spinal cord injuries, and a source of inspiration for thousands after becoming a quadriplegic from a horse riding accident.
A scientist from Cambridge makes incredible advances in black hole and relativity theories in spite of being unable to walk or talk due to Lou Gehrig’s disease.
From these people, we can all learn the importance of a positive attitude.
In 1977, I was going to college in Bloomington, Indiana. Things were going along as normally as they can in college, but I began to have problems standing up. Then I began falling down occasionally, then falling down more and more. But I was young, and didn’t want to admit that anything was wrong so didn’t do anything about this clumsiness.
After college, my first job was in Denver as a computer programmer. After about a year there, I became homesick and moved back to Indiana, again working in computer programming for various organizations.
I would like to use a passage from the book ‘The Tao of Pooh’ by Benjamin Hoff:
A saying from the area of Chinese medicine would be appropriate to mention here: ‘One disease long life, no disease, short life’. In other words, those who know what’s wrong with them and take care of themselves accordingly will tend to live a lot longer than those who consider themselves perfectly healthy and neglect their weaknesses. So in that sense at least, a weakness of some sort can do you a big favor, if you acknowledge that it’s there. The same goes for one’s limitations, whether Tiggers know it or not, and Tiggers usually don’t. That’s the trouble with Tiggers, they know they can do everything. Very unhealthy.
Once you face and understand your limitations, you can work with them, instead of having them work against you and get in your way, which is what they do when you ignore them, whether you realize it or not. And then you will find that, in many cases, your limitations can be your strengths.
Written by: Dave Mills
Edited by: Joan Wheele
Dave is one of our ferociously positive Lori's Hands clients.
Candy bar for a quick fix. Check. Loose dollar bills for the vending machine. Check. Blood sugar kit to know everything’s alright. Check. That list (usually with many other items) has crossed my mind countless times. My mother has had Type 1 diabetes since she was five years old. When I was five years old, I started to learn that list and the signs of hypoglycemia. In my family, I was always the best person to help her and ensure glucose stability. Now that I am away at college, my sister is starting to take over my role and share the responsibility with my stepfather. My mother’s chronic illness has been a family affair.
My mother may have a chronic illness, but she has never let it stop her from doing everything a person without a chronic illness does. That’s what I love about my mother. She does not succumb to her illness, she puts in every effort to control it and lead a “normal” life. Since she was little she played sports, did well in school and now works full time; as a parent she was always at all my soccer games, my sister’s orchestra concerts, back-to-school nights, and now even move-in days for college! Through her resilience and effort, I found my own strength: the compassion to take care of her on worst days, the determination to do my best, and the love to help
Enter my freshman year. My second semester of freshman year, I decided to take the Honors Colloquium course titled “The Human Experience of Chronic Illness.” I was excited to learn new material that was so different from my major (public policy). I loved learning about various chronic illnesses, not only the facts, but hearing how real people and their families were affected. Type 1 diabetes was one of the topics we covered and I immersed myself in the subject as much as possible! Now I am more informed about the illness, and the many other illnesses we discussed. Nevertheless, the best part of the class was being involved with Lori’s Hands. I was fortunate enough to have the founder of Lori’s Hands, Sarah LaFave, as an instructor in that class. Through our required visits for class, I fell in love and I knew I had to be a part of this organization. Soon after, I was an official volunteer and through what I think was a stroke of good luck, the executive board decided to bring me
onboard as Vice President!
Now, at just the beginning of my sophomore year I have the chance to become even more involved with this organization! I know my work, time, dedication will be well-spent on our amazing clients and student volunteers. Helping the Newark community and seeing the direct impact is a great feeling. I am excited for this school year and to meet the new clients, the new club members and get started on all the wonderful ideas we have for Lori’s Hands!
Written by: Nicole Rodriguez-Hernandez
Nicole is currently a sophomore honors student with a Public Policy major and minors in Organizational and Community Leadership and Urban Education. She hopes to be involved and work in the non-profit sector, specifically with organizations working in education (especially for disadvantaged youths) in the future.
In 1994, a beautiful, fluffy-haired daughter joined our family. Esther quickly demonstrated her easy-going, cheerful disposition, and her two older sisters adored her. Nineteen months later her little brother joined us, and she quickly took on the role of friend--and then mentor, as it became clear that his development was delayed. With his significant speech issues, Esther became her brother’s interpreter and champion. When Graham was diagnosed with Klinefelter Syndrome, our family energies went into making sure that we advocated for him in the special education system, and that we gave him every advantage of a loving, supportive family. The girls were marvelous at including him in their play activities--I remember many a time when he took the role of son, puppy, or maid as they played house! We set our goal to help him achieve independence in as much of life as possible, but knew as he progressed that some level of care would fall to us for the rest of our lives. We adjusted gears and expectations, continued to research and advocate, and moved forward.
Deciding that the family unit was adequate support for Graham, we went ahead and followed our dream to expose our children to life outside the USA, moving to Saudi Arabia where my husband taught ESL for three years. While we lacked some of the sophisticated support from speech and physical therapists, we had oodles of hours together for outings to zoos, amusement parks, shopping expeditions, and trips to the ocean or on jetskis and dune buggies- and in that culture, Graham was a favored child, primarily because he was the only son!!
We returned to Massachusetts for a few years, had another surprise addition to our family, and then threw caution to the wind to follow a dream to work with a non-profit in France. Our children jumped into the French local schools (except for Graham, who had an English-speaking tutor at home), and my husband and I studied French in an intensive immersion program. We moved closer to our target city of Marseille, prepared to make this work for the long term. As summer moved into fall, our inexhaustible Esther became easily fatigued, and began to cough. Fearing pneumonia or TB, we took her in for xrays. On Thanksgiving day of 2006, we were told our 12-year-old daughter had metastasized papillary thyroid cancer. Surgery followed, and then the ongoing care of radioiodine treatments to poison the cancer cells in her lungs. Overwhelmed and needing more support, we returned to Boston for her care.
Esther received amazing care at Boston Children’s Hospital and later Dana-Farber’s Jimmy Fund Clinic. We felt so fortunate to have caring and creative doctors and nurses, and were blessed to live in a state that had insurance plans to cover our medical expenses. Financial stresses still crept in with lost work, and we struggled to balance the needs of our children--when Esther was diagnosed, our other kids were 17, 15, 10, and 3. Advocacy for Graham got pushed to a back burner, because we only had so much time and energy. We worked hard to be a family, and to include everyone in our new normal. When hospital stays took us from home, my husband and I took turns so that we could be with her. We did things on Esther’s bucket list like eating lobster, letting her start a Video Blog channel,
dragging home a free piano, and indulging her need for books. So when she winsomely asked about an upcoming Harry Potter fandom convention in Boston, we coughed up the fee and agreed to take her daily to participate.
And that decision changed her life. Esther met John Green, the young adult author
that she idolized. They became friends and interacted often in the months ahead.
When her Make-A-Wish dream of visiting her online friends by traveling around the country in an RV became too much for her health, John and his brother Hank helped bring some of those friends to her in Boston, where Make-A-Wish sponsored an amazing 4th of July weekend bash replete with a Wizard Wrock show, firework party overlooking the Charles River, Limo rides to the theatre, a luncheon cruise on the Boston Harbor, and days spent in a hotel with heart friends that she had never met before in real life. John joined the party for a day, and history cannot adequately recount the joy of that day!
We lost our Esther a little more than seven weeks later. They were weeks packed with loving and living and administering medical care, and chronic pain, and
laughter wherever we could fit it in. We were carried by many arms around us
who hosted a fundraiser, brought us food, sent Esther gifts, and cared for us. We were isolated in our little world that illness creates, yet Esther always fought to live beyond that limitation. She invited a few significant friends for her 16th birthday. She made videos and wrote in her journals. She was part of the inspiration that raised $250,000 for her favorite charity, The HP Alliance. She colored with her brothers, and wrote a 12-page letter for Father’s Day. And she got to see the creation of a holiday of love, named in her honor by the Green brothers.
After her funeral, we realized that money had started to trickle in over purchases of the bracelet designed for Esther’s Make-A-Wish weekend. It seemed only natural to start a fund to give those monies away to help other families going through the kind of stress we had experienced during Esther’s four years of treatment. This Star Won’t Go Out was birthed, and today continues to make an impact for families faced with the diagnosis of a child with cancer through financial grants and family support.
I know that Esther couldn’t have imagined the success of the book that John Green wrote and dedicated to her, but she wouldn’t have been surprised that others found his writing irresistible. And somehow it feels like she might be smiling about the book of her journals, fiction, letters, and artwork published in January 2014--after all, in second grade she wrote that she intended to become an author. Today, her words continue to inspire, motivate, and encourage teens and
adults alike with her message to love others, and to live life fully, no matter the shortness or length of days.
Four years ago this week she died and, as might be expected, Esther’s death has been unimaginably difficult on all of us. Although she is irreplaceable (In fact, she is still very much our daughter and sister, even in her absence), we have continued to build a different kind of family, with perhaps the most painful evidence seen in the effect her death has had on her little brothers, especially Graham who has filled his room with her pictures and on Abraham who will know her more as ‘someone who went away’ rather than as someone who was very much here. Still, we are proud of the way our children continue to cherish their sister and the way each of them has dedicated their lives to valuing what was important to her. That’s just one small piece of her pretty amazing legacy.
Lori is the Director of This Star Won't Go Out, a non-profit that financially assists families with a child living with cancer. In 2011, the Earl Family founded TSWGO in honor of their daughter Esther, who died at age 16, four years after her diagnosis of thyroid cancer.
Lori works as an Instructor and Student Success Coach at Quincy College. She is a certified English teacher, with degrees in Psychology and Intercultural Studies. Lori is passionate about encouraging others to move towards wholeness, live life fully, and make a difference in their world. Asked what is most important to her, Lori is quick to say it’s her family. She and her husband Wayne have two other grown daughters, and two sons, one in high school and one in elementary school.
I remember the day I finally picked a major. I was so excited to study Public Policy and be surrounded by peers who shared my drive to better our country. The only problem was that I had no idea what policy are I wanted work in. One day I was sure I was going to work in environmental law, the next I was convinced nonprofit management was the route for me. Fast forward to today, entering senior year, and I am passionate and focused on health policy. What was the biggest factor in my shift from bouncing from policy area to policy area and then to committing to health policy? Lori’s Hands.
When I went to my first Lori’s Hands meeting the fall of my sophomore year I had no idea the effect it would have on my life. When I heard about Lori’s Hands during activities night, I was floored by what a great mission the club had and how committed the volunteers were.
In Lori’s Hands I found an organization that was doing meaningful service for some of the nicest people I’ve had the chance to meet. Doing community service is always great, but in my mind, one of the things that sets us apart from other organizations is our clients. They are incredible people who are always so interesting and fun to talk with.
After volunteering with Lori’s Hands for a semester, I became one of the Recruitment Chairs. In this role I was essentially tasked with one of my favorite things to do; talk about Lori’s Hands. The more I became involved with Lori’s Hands, the more I began to connect the dots between our clients needs and the holes in our current health and healthcare policies. Volunteering for our clients has given me great understanding of health issues at the most important level: the patients.
I spent last semester in Denmark studying public health and got the chance to learn about a healthcare system where aging in-place was the norm and all eligible patients had access to services similar to the ones that Lori’s Hands provides back here in Delaware. This got me even more excited about our work and passionate about working towards policies that would make it easier for all chronically ill patients in the United States to age in place.
I’m so excited to be back and serve as Finance Chair. I can’t wait to see all the amazing things we do this year and I know there will be a lot of them!
Written by: Emily Floros
She was only the second female in her high school’s history to score 1,000 points in basketball. She went on to net nine hundred more in college. She was a three-sport collegiate athlete, earned her bachelor’s and master’s degrees, got married and had three kids all before the age of 35. One year later, after being incorrectly told she was suffering from depression and fabricating her symptoms, a neurologist finally diagnosed her with Multiple Sclerosis. Her name is Michelle and she is my mom.
When she was first diagnosed, I didn’t really understand what it meant: what it meant for her, what it meant for me, what it meant for our family. The last fourteen years have gone by quickly and given me added perspective, but everyday starts off the same. Mom cringes as she fills a syringe (with medicine we both know isn’t curing her) and finds a spot to inject herself that isn’t too bruised or too sensitive for that sharp point. She drinks a big glass of water to accompany the myriad pills designed to fix this, delay that, numb this, and correct that. But we usually act like the quintessential American family—trying to get to work and school on time without forgetting to pack lunches and sign permission slips.
think the most difficult aspect for my mom and me is the inability for others to understand who she was before this disease and what she has gone through to be here today. I often get upset when a stranger notices my mom’s limp and says, “Did you just have knee surgery?” I wish her struggle to walk was as temporary as waiting for normalcy post-surgery. Most people don’t know what a lights-out shooter my mom was in basketball, how quickly she dashed around the bases in softball, or how deadly her strokes were in field hockey. But then again, I do know and I guess that’s all who matters.
Sometimes I feel like I am abandoning my mom. I dart off to college, only to be gone for 3 months at a time. I study abroad in places halfway around the world. I intern in cities far from our home in New Jersey. But she is the first one to support my ideas, as crazy as they are. She pushes me to be better and not let her MS keep me from living my life (even though I know it’s keeping her from living her life).
This will be my mom’s 30th year teaching elementary school—a feat in and of itself. And unlike many who dream of retirement, she is committed to teaching as long as she can.
My mom is hopeful that researchers will find a cure for MS. In the meantime, she continues to be an amazing mother to her kids, a loving wife to my dad, and a source of inspiration to her students and friends. What more can one ask for?
My nearly-completed fundraising email sat unopened on my desktop for more than four weeks. I had signed up for the Musselman Half Ironman to honor the two strongest women in my life: my Grandma Bette, who passed away from Leukemia in June of last year, and my mom, Sue, who continues her fight against Breast Cancer. Through my race, I had also decided to fundraise for Lori’s Hands, an awesome non-profit I cared deeply about. So what was keeping me from sending out the email? What if I got a negative response? What if I failed to meet my fundraising goal? Would I be ‘that guy’ nagging his friends to donate? My letter exposed a vulnerability – did I really want to share that with the world?
With my race a mere six weeks away, I was coming up with every reason I could to not hit ‘send’, but a couple frank conversations with friends convinced me. How bad could it be? I would send out a bunch of messages, probably annoy some people, and have a few uncomfortable conversations about something that was very raw for me. In the end, I would feel good about myself, and raise a few dollars for Lori’s Hands, so it would all be worth it.
I got community. The outpouring of support I received blew me away. People ranging from my closest friends to those I had never met showed up in a huge way. They donated. They sent encouraging messages. They produced videos, made signs, and organized raffles. They got up at 6:30AM on Monday, Wednesday, and Friday to train with me. 60-mile bike ride? Sure. Cold-calling local businesses to get them to donate? No problem. You name it, they did it. None of what I achieved would have been possible without the support of my community. got vulnerability. The letter I sent out was the real first leg of my triathlon. I was committed to honoring my mom and grandma with it just as much as with the race itself, but this meant letting 200 people in on the most emotional and difficult part of my life. And it meant painting the picture of all there was to honor in a clear way – not just telling people that my mom and grandma were incredible women, but showing them too. was moved by the response I received. People shared about their own experiences with chronic illnesses. They wrote of friends, family members, and loved ones who had suffered, of hardships endured, and overcome. Several times I was driven to tears while at work by people’s stories that so closely resembled my own. The way in which I was able to connect with others through my own sharing brought greater meaning to my fundraiser and race and has allowed me to bring that same vulnerability to other parts of my life. I got inspiration. Backed by my remarkable community, I experienced a new sense of what was possible. Sign up for a crazy race and do it. Set an unreasonable fundraising goal and make it. Put together a last minute raffle and pull it off. On race day, I dedicated different segments of my race to the loved ones of people I cared about. Each mile, I imagined who each of those people were to the people I knew and how those relationships resembled my own relationship with my mom and grandma. With those people in mind, I found the strength to transform my race, overcoming my own psyched-out terror through 70.3 miles of 30mph headwinds, torrential rain, and grueling hills. I was able to really be there for it, and loved every minute. undraising for Lori’s Hands was one of the most meaningful experiences of my life. What did I get? I got that by setting a crazy goal, sharing yourself, and getting your community on board, anything is possible. hinking about sending out that letter and not sure it’ll be worth it? Here’s my advice: Just hit send.
Written by: Luke Warford
July 13th, Luke Warford suited up to complete a Half Ironman at the Musselman Triathlon! Luke has been a friend and supporter of Lori’s Hands since it was just an idea, and over the past 6 weeks he has raised over $8,000 to support our organization (our biggest donation EVER)! He completed the triathlon in honor of his mother and grandmother, both of whom have had cancer, and both of whom exemplify the energetic and generous spirit of Lori’s Hands. Thanks for all of your hard work and support Luke! You are our hero.
My mom Lori worked as a bookkeeper and volunteered with an organization that provides support to older adults. She poured her heart into her work and her volunteer service. First and foremost, though, she is remembered as a devoted mother to Sarah and me, wife to my dad, sister to her siblings, daughter to her parents, and faithful friend to many. She was a caring person who exuded love of family and community. Mom was first diagnosed with cancer in 1995. She went through chemo and was in remission for a few years during which she was able to maintain a very active lifestyle. She was diagnosed again around 2000 and died in 2003. She was much missed after she died but the missing has generally changed to a celebration of her life – partly because of the futility of missing people who have died and partly because what my mother wanted most for the people she knew was for them to be happy. She certainly lives on in the consciousness and lives of many. She would say, if she were here, that her 44 year life was a full and meaningful one – but 44 years is not a full life. My mother was always grateful for the time she had – though there were definitely more things she would have liked to do like attend weddings, peel apples with her sisters, watch birds at the birdfeeder and help my wife and me to set up our first house. We would definitely love to have her help! Mom also had more impractical dreams – like wearing a mascot costume at a major sporting event. I doubt that my very shy mother would ever have actually followed through on that last dream, but she certainly would have continued to be the bedrock of many people’s lives.
Written by: Brett LaFave
Brett is participating in “The 2015 Ride to Conquer Cancer,” in honor of his mom. Check out his fundraising page here!
It is Tuesday at The Lionheart School and a group of the students are seated on one of the school buses with their volunteer name badges proudly displayed on their chests. They are headed to Dogwood Forest, a retirement village located near the school. The students’ smiles shine with anticipation as the bus comes to a stop at Dogwood’s front entrance. The only thing slowing these teens down is the crowd of residents waiting for them to arrive – residents the students consider friends. The students patiently navigate the hallway, while greetings are exchanged amongst this mutual fan club.
With the excitement of greetings complete, the teens divide into two groups and head off to their respective wings of Dogwood. The first group heads to the memory care center, Inspirations Neighborhood, where they find the staff playing word games or enjoying a song with the seniors, with hopes of triggering a memory. More greetings are exchanged – hellos, hugs and handshakes that are often repeated during the time spent in the center. While chiming into the game or song, the students set about their work of setting tables and preparing for the residents’ lunch. Too quickly, the teen volunteers have finished their job in this wing and say their goodbyes. They make their way back to the front desk and begin their second task – mail delivery. Some students will go about this job independently while others continue to learn the ropes with a teacher/job coach.
The second group of teens head to the bistro located in independent living wing of Dogwood. There they meet up with residents for an old-fashion game of bean bag toss, putt –putt, balloon volleyball or horseshoes. Encouraged to take charge, the students choose the game, set it up, score the game and, at times, help a senior physically play the game. The laughter is contagious and the participation easy among this group. The time flies and soon the teens are making their goodbyes in this wing as well.
Dogwood Forest is one of four vocational work sites that currently welcome Lionheart for Life students. Through the school’s vocational program, students are encouraged to work as independently as possible at each work site. In doing so, students gain confidence in themselves and their abilities while exploring a variety of tasks and potential work environments.
This fall, The Lionheart School and Dogwood Forest Assisted Living Community will begin the fourth year of their partnership. Lionheart School students are being given an incredible opportunity for social and vocational growth through this relationship. The chemistry between the generations is incredible. Students with autism and other communication differences are benefitting from the pace of life at Dogwood, the kind wisdom of their older friends, and steady support while they willingly serve others. Working in a positive, loving, and welcoming environment is so important for these teens and the skills they are learning at Dogwood that will transfer to a variety of other work locations.
It is Tuesday; however, if you ask the staff and residents of Dogwood Forest as well as the Lionheart for Life students, they’ll simply tell you it is the best day of the week!
I guess I lead a double life.
At first glance, I’m your typical urban young professional. I’ve got a corporate job in the financial industry and I wear heels and eyeliner every day. I attend meetings and write reports and I’m pretty darn efficient in Excel. I eat salads and go to yoga whenever I get a chance. Sometimes I go out for dinner after work. I fit the bill exactly.
But it’s all a show. The truth is that I’m constantly putting on a show. My computer bag rattles with pills in plastic cases. My back aches from holding myself upright for 9 hours a day. I have my doctor’s online portal open behind my Outlook emails. I’ll be sick in the bathroom and then sit down at my desk and put my headset back on. I get home from work and wake up 4 hours later still in my business casual clothes. I am barely holding it together for 40 hours a week.
I am plagued with an invisible illness. I was diagnosed with Lyme disease in June 2013 and have been coming to terms with it ever since. Diagnosis in and of itself was a journey that took many years and countless medical tests to discover, not to mention a few serendipitous interactions and moments of realization. Treatment has been physically and mentally arduous. I take over 40 pills every single day, sometimes upwards of 70 depending on the week. I’ve cut out gluten, lactose, caffeine, alcohol, salt, sugar, and sugar substitutes. My kitchen is filled with more pills and powders and liquid medications than and old-time apothecary. But even now, I can’t help but imagine the spirochetes swarming my veins and crawling up my spine. A war of epic microscopic proportions is being waged in every organ under my skin and I have no choice but to stand up and give another PowerPoint presentation.
I’m still a high-functioning member of society (because I’m one of the lucky ones) but I carry the burden of a secret lifestyle on my shoulders. I’ve spent years and years fixing my face to hide nausea, adjusting my shoulders to hide fatigue, teaching myself to focus on putting one foot in front of the other to walk through the day. Some people know that I have Lyme disease, but they have no idea what that means. They think it’s like malaria or rabies because I got it from a “bug bite.” They think I can just take a Centrum Silver instead of all of my supplements because “it has everything I should need.” They think I’m lazy or apathetic on the days when I feel like I’m trudging through mud because I at least had the energy to put on a dress and mascara that morning.
I’m not asking for help. In fact, feeling physically and mentally broken has driven me to prove my own strength to myself to the point of rejecting help. But I’m pleading for awareness: of how easily Lyme disease is contracted, of how difficult it can be to diagnose an invisible illness, and of the everyday battles of existence; of not merely surviving but living through it. Of the weight of keeping all of these secrets and lying about being okay and self-pressure to keep up in a world that won’t slow down for you.
Written by: Laura Myers
Laura Myers was diagnosed with Lyme disease in June 2013 but lived with related symptoms prior to that for an estimated ten years. She enjoys American literature, caring for her cactus, and teaching her old dog new tricks.
Imagine this: me, an innocent toddler, walking clumsily around our den, my mother’s outstretched hands ready to catch me if I fell.
Imagine this: me, six years old, racing ahead, thinking she was holding onto my bike. She wasn’t. Yet I didn’t fall.
Imagine this: me, twelve-years-old, sitting on the back porch, the hot wood burning the back of my thighs, hearing my mother tell me she has cancer.
Imagine this: still twelve, my mother’s head bald as a cue ball, but she’s gripping my hand as the surgeon wheels me back to the O.R. Me, having cancer. My mother, recovering from her last chemotherapy, sleeping in a hospital chair next to me all night.
A mother’s love knows no bounds. That’s what I’ve always heard. That’s what I’ve always felt, when she’s smoothed my hair or patted my back or kissed my cheek. It’s there, in the way she speaks to me, softly yet sternly, shaping me into the woman she knows I can be.
My mother was raised to be independent yet humble—not needing any help, but also not being afraid to ask for it anyway. She put this to use when the doctor told her that her own body had turned against her—she had breast cancer, and she’d need chemotherapy to save her life. She put on a brave face, not letting us see how scared she was, and she lived.
And just when she thought her nightmare was over—just when she’d stop fighting for her life—she found out that I’d be fighting for mine.
I was twelve, slowly merging into teenagehood, when all I should’ve been worried about was algebra and training bras. The doctors told me I was so brave and so strong. They told me I had Langerhans Cell Histiocytosis, a rare blood disease where the white blood cells attack the bone, but I was so brave and so strong. I’d be fine. One surgery on my skull to scrape the bad cells out, and I’d be done.
But then, a year later, at the ripe age of thirteen, a full teenager, I was back for a second round of surgery, and a more pressing worry. Chemotherapy was in the talks. My mother held her breath when they mentioned this. I breathed for her.
The first day of her chemotherapy, I cried. The first day of mine, I didn’t.
Four years flew by in a blur of butterfly needles and the same old question: how are you feeling today? For every appointment, for every treatment, every scan, every emergency room visit, she was there, smoothing my hair or patting mu back or kissing my cheek. She knew what it was like to be at the brink of death, and she wasn’t going to let me feel that fear alone. She knew she had raised me to be strong and brave, to not need help, but she helped me anyways, because that’s a mother’s love.
I probably would have died without the chemotherapy. But I definitely would have died without her there next to me.
I remember the day I received my acceptance letter to the University of Delaware’s Nursing program. Just like any other high school senior, I was anxious to move into my new dorm, excited to meet lots of new people and I really wondered if college courses were really 10X harder than high school, like my teachers told me they would be. While some of my classes were a lot harder than others, I felt that I was able to learn a lot and take away from each of them. Looking back, I can truly say that I would not have been able to predict that I would become the person that I am today…and much of my self-discovery came through my experience as a member of Lori’s Hands.
I first joined this great organization during my sophomore year as a way to earn community service hours. I really appreciated the up-close-and-personal experience that Lori’s Hands allows its volunteers to have with older adults that are living with chronic illnesses. After my first few visits to a client named Jean, I developed a keen interest in geriatrics and was sure I wanted to work with older adults in my future career. The stories she shared with me about her life before she experienced a stroke were so full of joy and happiness. It was very apparent to me that the unexpected stroke changed her life in ways that she couldn’t ever imagine. In her younger years, she worked as an elementary school teacher, which required lots of energy and enthusiasm for life. She also enjoyed gardening but now she is only able to manage a few potted plants that she often asks me to trim and water. It was the small chores that I could complete in 5 minutes that would probably take her an hour due to her disabled gait and limited range of motion that made me realize how difficult life can become for those suffering from a chronic illness.
A lot of older adults do not have assistance around the home and the fact that Lori’s Hands gives students the opportunity to learn about chronic illnesses while also making a difference in the lives of its clients has become the driving force behind my passion for the organization. Last year, I began to lose interest in clinical nursing and thought of ways in which I could have a larger impact in the field of healthcare delivery and administration. I took a great leap of faith and switched my major to Public Policy with a health-oriented focus. Ultimately, I aspire to help create efficient and inclusive health policies for all people and ensure that our ever-increasing older adult population is not overlooked.
I am both proud and honored to have been elected as the 2014-2015 President of Lori’s Hands. For this upcoming school year, I am looking forward to working alongside our other amazing officers and volunteers to continue to grow the organization and provide everyone involved with a fulfilling experience. I am also striving to build a greater sense of community among our volunteers and organize a few events that are open to the entire Newark community. I am thankful to Lori’s Hands for aiding me in my growth as a person, as I have learned a lot about myself through helping others. It has been a rewarding experience thus far and I am excited to help the organization expand and move forward. Onward!
Written by: Ashley Lewis
After reading an awesome interview on Verily featuring Katie Den Ouden, we knew that we had to reach out to her! Lori’s Hands had the privilege of interviewing Katie as she told us about her life, her work and her mother’s battle with multiple sclerosis. Katie’s interview below offers invaluable insight and we are so thankful to have had the opportunity to speak with her! For more information visit: http://katiedenouden.com/.
LH: Tell us about yourself and your work!
KDO: At 19, I was studying abroad and got a phone call that changed my life. My older brother and I had been the sole caretakers of my mother, who has multiple sclerosis. He called to tell me that our mom had gotten an infection and was in the ICU with a very small chance of living. I couldn’t do anything from abroad. Up until then, I thankfully never struggled with food or my body image, but in a matter of days I started using food to feel in control of my life. A downward spiral happened: depression, an eating disorder, losing then gaining thirty pounds in a year, hormonal imbalance, and isolation. I had felt tremendous amounts of guilt, shame, loneliness, and perfectionism. I felt hopeless with my body and in my life, like I was simply existing.
It was my journey of coming out of this stuck and simply “existing” place that unleashed my customizable road map, not a blanket approach, which women can use to find freedom AND uncover what their body, soul, and life needs – regardless of the health and stress of those around them. This roadmap includes the exact tools, adventures, mindset shifts to help women get unstuck at any point for the rest of their lives so they can be wild.free.alive. AND FULLY give back to the world and loved ones.
Bottom line – I help women come ALIVE and truly live and love their lives by unleashing the wild. free. alive. core of who they really are. It’s my passion, purpose, and one piece of huge joy in my life.Why? Because women who are fully alive, loving life, and in-tune with themselves create a ripple effect of contagious joy, living on purpose, and absolutely stunning beauty & abundance. Selfishly, I want to live in that world. But, I want you there with me, too.
LH: Have you ever worked with women who have chronic illnesses? How does or would that impact your recommendations or tools for success?
KDO: Aside from my mother who has had MS for my entire life, I’ve worked with numerous women who have autoimmune diseases, thyroid issues, endometriosis, IBS, infertility, cancer, and more. And while I no longer offer 1-on-1 nutrition coaching as it was too intense after caretaking for my mother for so long, it actually gave me an incredible foundation of insight and tools necessary to support and make true lifestyle changes (long haul baby) not just for a couple weeks or months.
Chronic illness, stress and emotional turmoil can wreck havoc on our bodies, emotions, relationships, purpose, and ultimately happiness. Without addressing ALL of these areas, we never really feel better. Once I started to boost the support, insight, tools, and understanding around the mindset…women started to have extreme self-care, sense of control, reduction in pain, and honestly sheer joy in their lives. I learned to we have to focus just as much, if not more, on our SOUL food as we do food food.
LH: You have shared with us that your mom has MS. What is it like supporting a parent with a chronic illness?
KDO: I’d love to say it’s a joy and easy, but it’s not. It’s hard as hell. There are days of optimism and laughter and days of straight up fear, unknown, guilt, sadness, loneliness, and helplessness. Over the years I’ve garnered more insight, been in the rodeo a little longer, and know more of what to expect…but I wrote an article that chronicled a specific incidence and need for self-care and shift in perspective here.
LH: What have you learned from your mom’s battle with MS?
KDO: I could probably share hundreds, but the main one’s that come to mind at this point in my journey are these:
Self-care: This is crucial. Just as much for the person with chronic illness as it is for the caretakers and those surrounding them. Often times it’s those who are so busy taking care of others, worrying about others needs/perceptions, and letting the stress build within who experience chronic illnesses. If we allow self-care to be a priority instead of attempting to prove our worth through what we take on, accomplish, or say yes to…we allow ourselves to be awake and in full-service (not ½ asleep) in our lives.
Live in the moment: we never know when life may end. Living in what ifs, shoulds, regrets, fears, etc., keep us from ever truly living life, loving fully, and giving back to the world. Experiencing my mother’s decline of living and the prospect of death from such a young age has given me an incredible appreciation for truly living, taking ownership of how I experience my life, and finding the joy in every day moments… I call it taking the ordinary to extraordinary.
Design vs. Default: we can’t always choose what will happen in our lives but we can always choose how we respond and perceive. This in and of itself gives us the freedom to design our lives and our direct experience.
LH: We meet lots of resilient people through Lori’s Hands who have turned their challenges into triumphs/successes. Do you feel that your current work and happiness are in part due to trials you faced earlier in your life? How have you turned your own “darkness” into “light”?
KDO: Without a doubt, yes. Most of the people I truly admire who are doing incredible work in the world have been through some deeply hard and trying times. It’s in these moments we get a choice – default into despair or choose to stand and change the world. For a time in my past I choose despair and when I could no longer sit in it, I choose to rise up, take a stand, and design a new path…leading to my purpose to show the way for others to come out of that place of feeling controlled, depressed, guilty, lonely, dark, and disillusioned and CHOOSE joy, freedom, bravery, happiness to truly come ALIVE.
It’s taking radical responsibilities for our own lives so that we can share contagious joy (and support) for everyone we encounter.
LH: Many of our readers are current college students or recent graduates. What advice do you have for young people who want to be healthy during chaotic, transitional periods in their lives?
KDO: Create basic non-negotiables. What are the absolute 3-5 things you must have in order to be grounded, nourished, and awake in your life? For me… I need 8 hours of sleep, the right foods for MY body, tons of water, intellectual/spiritual stimulation, and a morning and bedtime routine/ritual (includes meditation and gratitude practice). I do not budge on these or try to negotiate. With these basic pieces, I feel grounded, at peace, and fully able to be myself in the world – in chaotic times AND in support my mother and her needs. Don’t be afraid to be selfish in your self-care. There is no shame or guilt in putting your own oxygen mask on first SO THAT you can fully be of service to others. If you don’t…you’ll crash and burn and be of no service to anyone.
More on Katie’s journey:
I love to give this visual: Think back to a time (or now) where you felt fully in the moment, giddy with excitement and adventure, not a care in the world about your body, food, career, or in this case health of a loved one…but rather killer confidence and contagious joy. Connected. You weren’t held back. You weren’t stuck. You weren’t confused. You weren’t weighed down. You were happy. wild. brave. free. ALIVE.
Got that moment?
Now surround yourself in that moment with thousands of other women cheering you on (go ahead, picture it), seeking together the great life, and celebrating your awesomeness (no comparison, no competing). Feels pretty amazing, right?
A lot of women try treadmills, cleansing and discipline to get to this feeling and “place”… and feel something is wrong with themselves when they can’t stick to it or frustrated when they do get “there” and still aren’t happy and FREE. I found for myself that when I started to uncover who I really am, unleashed my desires, owned my worth and beauty, treated my body fabulously, and lived the way I thought I would live when I got “there” (instead of waiting on the weight, perfect health of a family member, career, man, permission, etc.)…THEN I started shedding excess weight (body + soul), being well-fed (food + soul), and feeling free and ALIVE.
Erin Whitten is currently a junior in high school from Revere, Massachusetts. She has a strong passion for writing and is a blogger for Huffington Post! We were so happy that she shared her story with the Lori’s Hands community. Click here to read one of Erin's Huffington Post pieces.
When my mother died I was only eight. For a while, my life was a blur and I really didn’t know what to do. I was numb, and did not know how to function without the love of my nurturing mother.
It’s almost nine years later, and I still feel desolate. Now that I’m maturing, it’s hitting me harder than before. I am competing for colleges, taking rigorous classes, and I’m now realizing how much my mom’s death impacted my personality and the drive that I have today.
My high school experience has not been the best. I was a slacker freshman and sophomore year. I became determined that junior year would be different. I have kept my grades up and become focused on getting myself accepted into a college of choice. Seeing my mom battle MS and then cancer taught me that we are stronger than we think. I want to honor her memory, and make her proud.
I have many memories of me and my mom hanging out and being fools together. I remember one warm summer day, when we were at my brother’s little league game. My mom was very involved in our community, and that day she was working the concession stand. During the game, it began to massively storm outside. I remember as it began to pelt hail, my mom ushering me and my brother into the stand, and the three of us huddling inside the little shack together. I’m so thankful to have memories of her comfort, her strength, and her sense of humor.
Just as she had cared for us, we had the responsibility of taking care of her once she got really sick. Every day I would come home from school and take care of my dying mother. I’d help with her personal care, adjust her if she was uncomfortable, and make her as happy as she could be. My grandmother and my dad had the brunt of the caregiving responsibility, but my brother and I still attempted to help however we could. I like to think that the experience changed me, and that I’ve carried a piece of that sense of responsibility with me from a young age.
Just as we worked in those last months of her life to do everything in our power to bring her comfort, I live today with her always in the front of my mind – trying to shape a life she would be proud of, and that I can be proud of too.
Written by: Erin Whitten
A few months ago, our founder Sarah read a piece that Alexandra had written. This piece was a letter written to Bruce Springsteen about how his music had been Alexandra’s father’s favorite and how it provided her comfort when he passed away. The letter resonated with Sarah, as she had a similar experience with Billy Joel’s music when her mother passed away. We tracked down Alexandra and knew that she had to share her insight with all of our readers… and we are so happy we did. Once you read — you’ll know why!
LH: What have people done that has been most supportive for you as you have grieved the loss of your father?
AZ: Lending a shoulder to cry on. Sometimes literally, but it’s best when it’s through their actions. During the days that followed the death of my father, our house was filled with people offering their shoulders. Everyone from my preschool teacher to my dad’s Wall Street Journal editor to the woman my family stood behind the week before at our local deli. They were all there and we appreciated them.
Since then, we’ve been incredibly lucky to be surrounded by our community, family and friends who have all expressed generosity in different ways. My Uncle Randy flew to my college graduation in Indiana because he wanted to be there for me during that hard time. My extended family and close friends put a smile on my face every time they reminisce on the fond memories they had with my dad. Even strangers who continue to read his books provide me with a distant, yet comfortable, shoulder to cry on. All of these people have contributed to carrying out my dad’s legacy and that’s the kind of support I don’t take for granted.
LH: What would you share with other young people grieving the loss of a parent?
AZ: Time is your best friend. It’s hard to see that in the early stages of the grieving process, and I had trouble believing it at first, but it’s been a little over two years now and I’m blown away by the progress I’ve made. I questioned whether or not I could ever be happy again, but I’ve had some of the best times of my life over the past two years.
The best advice I can give is to stay close to family. It’s comforting to be surrounded by people who are going through it with you. It will lift your spirits knowing you’re there for your loved ones when they need you most. Also, try to keep busy. It’s a temporary form of medicine, but I promise it works
LH: Your dad, Jeffrey Zaslow, was a successful writer. Did it affect your family’s grief experience that he was in the public eye?
AZ: My family received a great deal of support not only from our friends and community, but also from my dad’s fans. We always knew how special he was, but to hear the impact he had on hundreds of thousands of readers was the most inspiring thing to have come out of such a tragedy.
LH: Your dad co-wrote Randy Pausch’s “The Last Lecture.” What did he share with you and your family about what he had taken away from that project?
AZ: Time is precious and you never know how long you get. Randy inspired my dad to go out and celebrate life. He would interview Randy by phone every day and during one of their calls, Randy was going through a self-checkout line at the grocery store when he noticed they had charged him twice. My dad asked him if he wanted to deal with getting his money and then call my dad back. Randy said he wanted to keep talking and that he’d rather have 15 minutes than $16.55.
At the end of their calls, Randy would sign off telling my dad to go hug his kids. And, of course, he always listened.
LH: Bob Greene wrote about your dad’s initial interest in Randy’s lecture, and how he believed it was something special before other people did. What can we learn from your dad about listening to our gut feelings and pursuing things we think are important?
AZ: My dad’s middle name might as well have been spontaneous. He was always up for an adventure and knew a good story when he saw one. When he found out about Randy’s lecture, he knew it was going to be a story worth telling. It wasn’t the first time my dad followed his heart, either. He’d travel long distances and call people 20 times before they’d hear him out. Sure enough, they’d all have features written about them in the Wall Street Journal and some even had New York Times bestselling books dedicated to their stories.
Greene ends his article summing up my dad’s own story, “And when the day finally comes when you have your big success, when you get your big break, it won’t be because you made the extra effort once. It will be because you made the extra effort every time.”
LH: Has your experience of loss changed your writing and career interests?
AZ: Definitely. I feel for people in a way that I wasn’t able to before. It opened my eyes to the struggles others go through, which in return, led me to finding out about their triumphs. I felt an urge to share these stories, in the same way you guys are sharing my story. When you feel a connection to the story, it’s easier to make it come from the heart.
I also have a strong desire to carry out the legacy of my father. He had so many more stories that he didn’t get a chance to tell. It’s my job to make sure I get to tell those stories. I even find myself implementing his writing style in some of my pieces and not even realizing it. But when I do, I smile.
LH: You’ve written extensively about people who turned tragedy into something positive. What story stuck with you the most?
AZ: Back in November, I wrote about a woman named Jessie Kuehl who wasn’t able to visit her father’s grave on the 40th anniversary of his death. She posted an ad online, hoping to hear back from a couple sympathetic people in the area who would go to her dad’s grave to tell him she missed him. She ended up hearing back from tons of people saying they’d be happy to visit on her behalf.
After my lengthy phone call with Jessie, we hung up and became Facebook friends so that we could keep in touch. I sure am glad we did because a few weeks later, she contacted me and said that a man in California read my article and offered to fly Jessie out to visit the grave herself.
I’m so thrilled that my words had that kind of impact on someone’s life. That’s the beauty of journalism.
LH: Your dad’s book “The Magic Room” shares intimate stories of brides-to-be. What did your dad teach you about love and marriage?
My dad loved love. He treated my sisters and me the way he expected our future husbands to treat us. It’s the endless love he gave us that taught us what to look for in someone we want to spend the rest of our lives with.
He also taught us by example. My parents’ love and respect for each other was so evident. I’m going to make sure I share that same love and respect with my future husband.
My dad turned his passion for love into “The Magic Room” and I feel so lucky to have been able to hear the remarkable stories over the dinner table as he was working on the book.
LH: A lot of our readers are college students. Do you think that young people have the power to make a difference? What advice do you have for our graduating seniors?
AZ: Absolutely! It’s the young ones who are dominating the working world. We have more power now than we’ve ever had in the past and it’s up to us to take advantage of it.
To those college graduates, go out there and do what you love. If you can make a living doing it, more power to you!
Thank you Alexandra for sharing taking the time to answer our questions with such thoughtful answers! We truly appreciate it. To learn more about Alexandra, please visit her blog.
Lori’s Hands interviewed University of Delaware senior, Morgan Wiener. Morgan, a Mass Communication and Media Studies student, is from Short Hills, New Jersey. Here, she shares her experiences about being diagnosed with arthritis early in life.
Lori’s Hands: What do you remember about being diagnosed?
Morgan Wiener: I don’t remember much since I was young but my parents one day noticed my ankle was swollen. They originally thought I had a hairline fracture but when it didn’t get better, they realized it was something more. I went through a series of tests. At one point the doctors thought it was Lyme disease but blood work ruled that out. They eventually diagnosed me with Juvenile Rheumatoid Arthritis.
LH: How old were you when you were diagnosed?
MW: I was 5 years old.
LH: What have been your experiences like with doctors and nurses? How frequently do you have to see a doctor because of it?
MW: I live in New Jersey and when I was younger my doctor was located an hour from my house in Hackensack. She then relocated to a hospital in the Bronx so it became more of a hassle to get to. She was great and a really a well-known specialist, but when I got older she passed me off to another doctor. At the time I was a little upset because I had been seeing her since my diagnosis. However, the other two doctors I’ve had since then have been good too. I only go twice a year and they usually have me in and out.
LH: What is one thing about your life that is different because of your diagnosis?
MW: I grew up very differently from my siblings and friends because I was not able to be as active and fit at times. There were times when the pain was so bad, I couldn’t fully straighten my leg and I’d be limping around. This would mean that I had to miss a lot of school and gym classes usually. Growing up, I’ve also had to get my eyes checked every few months because if I developed arthritis in my eyes and it went untreated, I could go blind. In addition, I have to get blood work and x-rays done every year.
LH: What would you tell a new Juvenile Rheumatoid Arthritis patient?
MW: I would express how hard it can get because of the different lifestyle. You can’t be as active as other kids and you have to see doctors constantly. However, I remind myself that there are so many worse health conditions and while there is no cure for JRA, you can still treat it and live a normal life.
LH: Does arthritis run in your family?
MW: None of my family has ever had JRA. My grandparents have arthritis but from old age.
LH: What do you do to treat or manage your arthritis?
MW: When I was little, I used to get my knees and ankles drained and had a steroid put in. I actually got put under anesthesia for the first few times but as I got older I didn’t need to. That worked for a while but then I would have less and less months of feeling no joint pain and swelling. At times, I would go months feeling completely fine and my doctors said I might outgrow JRA with puberty. Unfortunately, that didn’t happen.
Eventually I went on medicine. At first it was by pill, which worked well for several years. The pill was called Methotrexate. Methotrexate treats several kinds of cancer, including bone, lung, breast, head, neck and cancer of the blood. It also treats rheumatoid arthritis. Then the doctors took me off of it and I was symptom free for a few years and needed no medication. When my symptoms returned, the Methotrexate no longer worked and the doctor started me on Enbrel. I administer it to myself in the form of a shot once a week. I have been on it now for three years and it works great. Sometimes I am bad with taking the shot on time so my joints will start to ache and swell but as soon as I administer the shot, I feel a lot better again.