Vol. 4 Issue 1 / Fall-Winter 2017Life Ties

IN THISISSUE:

A Messagefrom Aftercareby Gwenn Silva

Tissue Donationby Angela Rosati

VolunteerProgramby Kathy Clark

The Power of Researchby John Tomaso

Donor Family Gathering

Donate Life Run/Walk

Ways toRemember Loved Onesby Boris Randall

Resource Corner

The Tasks of Grief by Karen Curry

Donor Parents Josh & Aline hold a photo of Carter who saved lives.

Greetings! Here at Donor Network West, we have experienced many transitions over the last several months. Throughout these changes, our main focus has been to continue serving our donor families, while increasing the number of lives that can be helped through organ and tissue donation.

The fall/winter months are quickly approaching. You may or may not feel like celebrating holidays, whichever ones you honor. This happens to all of us from time to time. If you feel that you need support during this time - resources, referrals, a supportive phone call - please do not hesitate to contact us. We are always here for you, during this season and any other. Warmest Regards,

Gwenn SilvaManager of Donor Family Aftercare

Donate Life Ambassadors are the heart and soul of our community program at Donor Network West. Our ambassadors reach out and touch the hearts of those in their communities by sharing their story and spreading hope to heal through organ and tissue donation.

There are many opportunities for you to be-come involved if and when you are ready. Together, we can save more lives and increase the number of people (like yourselves!) who say “yes” to donation.

Join us! Please see our website for more informationDonorNetworkWest.org or reach out to our Volunteer Program Manager, Kathy Clark. kclark@dnwest.org

The Donate Life Run/Walk is a fun, supportive event where families partic ipate in 5k or 10k routes, volunteer, or watch. Many donor families walk in honor of their loved one, you can also start a team of your own.

The 2017 Donate Life Run/Walk took place on September 9th in Walnut Creek. Save the date for Sept. 2018. More info will be available soon at: 5k.dnwest.org

A MESSAGE FROM AFTERCARE

VOLUNTEER PROGRAM

DONATE LIFE RUN/WALK

At this time of year, I think about how the gift of donation affects us. It’s easy for me to focus on “so much to do, with so little time” and not focus on the time hopefully spent with our loved ones. I am very aware of the loved ones who are no longer physically with us. I honor my father with the foods and activities that he enjoyed when we were together. He was a wonderful man with a full laugh and engaging presence. I’m proud of the joy and happiness he pro-vided in life, and I’m proud to take on the responsibility of re-telling the stories and punch-lines we used to roll our eyes to when we heard them year after year! I am proud of him in death as well. He became a tissue donor and through his donation has helped many people return to posi-tive and healthy lives. Tissue donation is a gift that continues to touch the lives of many, not just the recipients themselves, but their families and friends. This year, I wish all donor families peace, the peace that comes from knowing how your loved one, like my dad, has allowed recipients to continue enjoying full and joy filled lives.

Angela RosatiVice President of Tissue Donation Services

TISSUE DONATION

Research in coordination with organ and tissue donation has the power to diagnose and treat future patients in addition to saving and improving lives. Donation for research purposes helps families who work with Donor Network West build on their loved one’s legacy. This may include discovering methods to provide more organs for transplantation, developing tests to identify different types of diseases, testing new treatments for conditions such as diabetes, and researching how to treat conditions like Alzheimer’s disease. Thanks to the generosity of donors and their families, we have the opportunity to find better ways to diagnose and treat many diseases in the future. Below are a few examples of how research samples may impact the future of healthcare and medicine. John TomasoProject Manager - Research

Each year we honor the donors and their families with a Donor Family Gathering. The Gatherings take place in three different locations: Pleasanton, CA; Fresno, CA and Reno, NV. If your loved one was a donor in the year 2017, you will receive an invitation in the beginning of 2018, and we will be honored to join with you at the luncheon to remember and honor your loved one for the gift of life given.

Creating a quilt square is another way to honor your loved one’s legacy. Each year we create Donor Memorial Quilts out of the quilt squares provided by donor families.

These Donor Memorial Quilts honor and remember those who have given the Giftof Life. Each square is unique and personal. Some have pictures, others sayings. All together, they represent the lives of all those who have been so generous.

For more information visit: DonorNetworkWest.org/donormemorialquilts If you have any questions, please do not hesitate to contact us at 925-480-3159

THE POWER OF RESEARCH

DONOR FAMILY GATHERING

As many as 40 million people in the United States suffer from chronic pain and as a result take medications that can cause serious side effects, including addiction. We have partnered with scientists from AnaBios to assist in the research of chronic pain and pain therapies, through the recovery of a small cluster of nerve cells from just outside the spinal cord. This spinal tissue is called dorsal root ganglia. Researchers have discovered a new approach to target specific nerves when treating local pain. This has the potential to reduce patients’ dependency on Opioid medications.

Although military personnel are equipped with the most advanced body armor, challenges remain with facial protection and injuries. We have partnered with scientists who are developing technology to repair these injuries to the face. The hope of this study is to find solutions for long-term regeneration that may create better outcomes for our wounded soldiers.

Over one million people in the United States have permanent disabilities due to various muscle diseases that impact development and function. We have partnered with scientists who use modified muscle samples to treat and heal people affected by these muscle diseases. Our work together may identify new treatments for these various muscle diseases.

Chronic Pain Relief | AnaBios Corporation:

Military Tissue Reconstruction | Aegeria Soft Tissue:

Muscle Regeneration and Healing | UCSF:

The death of someone we love changes our life forever. The pain of loss may feel as if it will never end. The process of grieving is slow and often involves “two steps forward one step back”. Sometimes it may be helpful to know there is a path through this process. The journey is often a long and painful one but there are guideposts along the route that can illuminate our way. These guideposts are often called “tasks” or “phases” of the grieving process. These tasks or phases are not linear; it is possible to move forward and backward along the way. They don’t occur in any particular order and each task can be revisited. In fact, these tasks may need to be revisited throughout your life as anniversaries, special occasions, and other losses occur. There is no one right way to grieve and mourn. It is as individual and unique as the relationship you shared with your loved one. Everyone’s journey will not be the same, even within the same family.

Karen CurryDonor Family Advocate - AftercareThese tasks are adapted from the book Grief Counseling and Grief Therapy, 4th Edition, 2008, by William Worden.

THE TASKS OF GRIEF

TASK 1 : Accept the reality of the lossThis step involves acknowledging the truth of this situation. Your loved one is gone from you physically and will not be coming back. It is common to experience shock and disbelief, especially if the death was unexpected or traumatic. You may feel as if you are in a dream or outside of reality and expect your loved one to walk through the door. Acceptance does not mean agreement or approval of this situation. Nor does it mean severing ties and forgetting. Acceptance may mean you have arrived at that moment when you step on the path. Rituals are often employed at this time such as memorials and funerals. Sometimes it is helpful to write a letter to your loved one or talk to a therapist or close friend. Whatever you need to do to come to terms with the reality of this loss is the purpose of this task.

TASK 3 : Adjust to a new environment with your loved one missing

At some point, life continues. Children return to school, adults return to work, and the tasks of daily living need to be completed. It becomes apparent the many roles and duties your loved one performed that now must be completed by someone else. New skills may need to be learned such as bill paying and gardening. More profoundly, a new self-identity must be absorbed. Who are you now without your loved one? This readjustment happens over time. This task may require asking for help when needed. Mastering the challenges of this step can lead to a greater sense of accomplishment and growth.

TASK 4: Find an enduring connection with the deceased while moving forward with life

The death of a person close to us does not end our relationship with them. Thoughts and memories of our loved one will continue to be part of our lives. Our emotional feelings for them will continue. As any relationship, it will change over time. There will be moments when we feel especially close to our loved one and times when we do not. This task involves allowing the possibility that, while our loved one will always be with us, life will present us with other options. New activities and relationships that may bring us pleasure and are meaningful will appear. Life did not stop when our loved one died and it is important that we continue to live. We cannot change the fact that our loved one is gone. But we do have a choice in our response. We can choose to find a way forward while incorporating the deep sorrow and love we feel and will always feel. We can take this journey of healing.

TASK 2: Work through the pain and griefThis is often the most difficult task. The loss of someone we love brings with it so many feelings - anger, sadness, emptiness, confusion, anxiety, loneliness, guilt, regret, longing. Our culture does not always support expression of emotions and encourages avoidance or “keeping busy.” The only way through these feelings is to experience them fully. One can avoid them or self-medicate through the use of drugs, alcohol, or work but it is through confronting our pain we learn to reconcile ourselves to it. Expect to be exhausted and physically sore. It is common to experience loss of appetite and have difficulty focusing and making decisions. Now is the time to take good care of yourself - eat well, sleep and rest, exercise and spend time with people you feel comfortable with. There is no way around this task, only through.

How we grieve can be as unique as the person we wish to honor. Having the ability to be around those who shareyour grief can make a world of difference. We would like to share with you some activities that may help.

Gather those with whom you feel comfortable and find solace, knowing you are following through with a gesture your loved one would appreciate. The Neptune Society is a great resource for finding out when and where this is permitted. www.neptune-society.com

Content adapted from: www.everafterguide.com,www.caring.com & www.austingrief.orgPhotos courtesy of www.everafterguide.com

WAYS TO REMEMBER A LOVED ONE

Reserve a sacred space, whether you decide to have a designated table in your home or a sacred garden in your yard. You can gather some of your loved one’s favorite belongings in this area along with pictures and candles.

Get together with family and friends, visit places, and engage in your loved one’s favorite activities. This can be an opportunity to process grief together.

Have your loved one’s jewelry engraved with a heart-felt message. Customizing accessories can allow you to cherish your loved one’s memories forever, no matter where you are.

You can capture your favorite memories and pictures in this book. Share with family and friends while reminiscing over your favorite stories.

Make a quilt, stuffed animal, or pillow, using your loved one’s clothing or similar materials. These items may bring you some comfort, knowing their favorite belongings are being put to good use.

Many options are available for those with loved ones who have been cremated. Dispersing their ashes in a place or places of unique significance can be a pivotal step towards processing grief.

Create a Memorial:

Tracing footsteps:

Making accessories symbolic:

A book for your loved one:

Cozy reminders:

A unique sendoff:

Have you visited our website recently? Over the last several months, we have updated and added information that is pertinent and useful to our donor families. Check it out: DonorNetworkWest.org/donorfamilyaftercare • Contact information for everyone in our department• An extensive resource page with a list of grief literature, websites, and links to local support resources• In-depth information including how to write to transplant recipients and how to make a quilt square for a memorial quilt• A change of address form so you can easily let us know when you have moved• And of course, an archive of past issues of Life Ties

RESOURCE CORNER

Still haven’t found what you are looking for? 925.480.3159 / aftercare@dnwest.org

Boris Randall Donation Process Specialist - Aftercare

Main Office12667 Alcosta Blvd. #500San Ramon, CA 94583

Want to receive future issues of Life Ties? If you haven’t already,

email aftercare@dnwest.org or call 925-480-3161

to be added to our mailing list.

And remember to visit DonorNetworkWest.org/donorfamilyaftercare

for further information and resources.