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Surviving Co-Multiples, Twinless Twin, Lone Twin

Twinless Twins, Surviving Co-multiple(s), Lone Twin, all of these terms have been used to describe a co-multiple(s) who has survived his or her multiple birth sibling(s).

The death of a co-multiple might have occurred in utero, been a stillbirth, occurred in early infancy, through an accident, murder, suicide, illness or natural causes. The effect on the survivor(s) has only recently been researched and acknowledgement made that this type of loss may be more difficult for the survivor, regardless of the age the loss occurred, than was previously thought.  Some survivors call their loss (as it occurred later in life) ‘worse than losing a spouse.’  If one thinks about it, co-multiples have been together since conception and share a unique bond and lifestyle journey that majority of us do not. Changing “we” into “I” is not an easy transition and the first shared birthday alone, for example, can be extremely difficult.  For surviving co-multiples who look a lot alike, looking in the mirror can be emotional as they are reminded of their deceased co-multiple or get mixed up as to who is really looking back at them, a challenge the majority of us do not have to face.   It is important to not only recognize that this loss is unique, but that it also requires unique skills on the part of the professional for supporting and assisting survivors.

From time to time, I am approached by surviving co-multiples who would like to connect with other survivors. If this is you, send me an e-mail. Please include your age, age at loss, type of loss (e.g. illness, accident, stillborn, etc.) , whether you are male/female and gender of that of your co-multiple(s).  I will do my best to find a connection for you.

If you are a multiple birth survivor and would like to share your story, please send me an email and let me know about how your loss has affected you.  By sharing your story, it may be possible to help other surviving co-multiples with their grief journey. Please accept my sincerest condolences on your loss.

A neglected area of support, counsel, resources and understanding for twins, triplets and more are the experiences of those who lose their co-multiple(s). Multiple-birth individuals begin their lives together, but the odds are stacked against them in leaving the world at the same time.  Whether the loss occurs in utero, at birth, shortly thereafter or along life’s journey, for the survivors the loss can be devastating.

Studies have shown that multiple birth babies begin their unique relationship in utero. The special bond that they have with each other doesn’t terminate with the death of one (or more) of them.  While death may end the life of one or more co-multiple, it does not end the multiples’ relationship with each other. Turning ‘we’ into ‘I’ is not a simple task for the survivor(s).

I have been contacted by many multiples who lost their sibling(s) in utero and they express feeling “empty and/or unable to make and keep friends or have meaningful relationships.”  Some indicate they feel robbed, unworthy, stalled in their life, having to make their parents happy by living a life for two, trying to live a life for two because they do not want their co-multiple’s life to have been wasted, survivor’s guilt, and so much more.

Monozygotic [MZ] (identical) multiples often feel as ‘one’ and may feel each other’s pain, share each other’s thoughts and report feeling incomplete when they are apart. They are reminded of their sibling each time they look in the mirror and several surviving MZ men report having a difficult time shaving after the death of their co-multiple.  The task of shaving, which is common to most men, becomes an overwhelming reminder on a daily basis of his loss for the brother. One survivor grew a beard so that his reflection would not be a reminder of his brother. One MZ woman, who lost her twin sister in a car crash, reported being traumatized when she looked in her sister’s casket and thought she saw herself, dead. These types of blurring of the boundaries between one and the other are particularly difficult.

This does not mean that dizygotic [DZ] (fraternal) multiples do not also feel an intense bond between them. One adult woman who lost her co-multiple (a brother) from a childhood disease as 6-year olds noted that all of her life she had felt “lonely and alone,” in spite of a successful marriage, career and 3 beautiful children. “There is no one to watch my back,” she advised. Not only was she dealing with the loss of a special brother, but she also reported feeling guilty about surviving the disease that terminated her brother’s life. 
To make her mourning even more difficult, his things were packed up, given away and his name never mentioned again after he died.  She was old enough at the time of his death to remember him well and was upset and confused by her family’s decision to pretend that he had never lived.  Their decision left no space for her grief or the profound affect his loss made on her life.

It isn’t uncommon for surviving multiples to be very driven, often trying to live their lives for two, one for themselves and one for their deceased co-multiple(s). They may also feel a need to succeed in order to try to make their parents feel ‘happy.’

Or the opposite – a surviving triplet recounted that one sister died shortly after their births. A phone call to the family from the hospital indicating a second triplet had also died halted the funeral service, so that the two babies could be buried together. The wee survivor fought valiantly in hospital and had had 4 open-heart surgeries before she was 5 years old. At the age of 22 years, she was “stuck” in her life. Although she had managed to finish high school, she had done little else and felt she was drifting. She reported feeling melancholy, sad, guilty for putting her parents through the worries of her precarious health when they had already lost two babies, and very guilty that she had lived while her co-multiples had not.

It is highly unlikely that a deceased co-multiple would want their surviving co-multiple(s) to change places with them. I believe they would want their co-multiple(s) to live his or her life to the fullest, to succeed, to prosper and be happy. I would also suspect that they would want to be thought of from time to time, and have a little place in their sibling’s heart set aside to remember them.

Some concrete ways to remember your sibling(s) can include volunteer work in their memory, or making a donation to a special charity (perhaps annually – say your Birthday, or choose a date that is either meaningful to you or your deceased co-multiple), or having a tree planted in their memory. You might even find that when you have a child of your own, you may use your sibling’s name, even as a second name. All of these ways celebrate your sibling and his or her life, no matter how short.

If you feel that you simply cannot get over losing your co-multiple(s), consider asking your doctor to refer you to a bereavement counselor who understands the unique bonds that multiples share and what it can mean when those bonds are broken. Looking for support and understanding about what you are feeling doesn’t mean forgetting your co-multiple, but it does mean addressing your sorrow and pain and learning to handle it constructively so that you can indeed live your life to the fullest.

Here are a few resources, I have found which may assist you.

Bibliography

Living Without Your Twin, by Betty Jean Case, 2001, Tibbutt Publishing
Twin and Triplet Psychology, Edited by Audrey C. Sandbank, 1999, Routledge

Reading Resources

Who Moved the Sun?  A Twin Remembers, by Ron McKenzie, D.E.M. Publishing, 2011
The Lone Twin: Understanding Twin Bereavement and Loss, by Joan Woodward, 1998, Free Association Books
Entwined Lives, Nancy L. Segal, Ph.D., 2000, Penguin Books
Forever Linked: A Mother’s Journey Through Twin-to-Twin Transfusion Syndrome, by Erin Bruch, Philatory Ink, 2011
Men & Grief, by Carol Staudacher, 1991, New Harbinger Publications
On Children and Death, by Elisabeth Kubler-Ross, 1983, Collier Books
A Child’s View of Grief, by Alan D. Wolfelt, Ph.D., 1991, Center for Life and Transition

Organizations

Twinless Twins was founded by Dr. Raymond W. Brandt many years after the accidental electrocution of his monozygotic brother, Robert, at age 20 years. Dr. Brandt died in June of 2001 and was buried on the 52nd anniversary of his brother’s death.

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Study on the effects of losing a twin

The purpose of “Two in One: Once a Twin, Always a Twin” is to study the effects of a twin losing his or her twin and to investigate the differences of the impact based on when the twin loss took place (Early loss, Childhood loss, Teen loss, Adult loss). I contacted hundreds of twinless twins and emailed them questionnaires about how it was to interact with their twins and what the affects of losing a twin are, among other questions. Through this twin loss study, it is evident that all twinless twins feel a significant loss in their lives. Early loss twins have always felt that something is missing from their lives and they find it difficult to talk to their parents about the loss of their twins. Most of the adults who lost their twins later in life went into a deep depression. The common denominator among all twinless twins is that they feel significant losses in their lives and many limit themselves to talking to few people outside of the Twinless Twins Support Group.

Two in One: Once a Twin, Always a Twin, a study written by Robin A. Phelps

From Lynda: Robin is a 17-year old monozygotic young woman who lost her twin sister, Jacqueline, shortly after their birth. Robin has struggled to understand why she survived and her sister did not and her feelings around the loss of a special relationship with Jacqueline. At the encouragement of a special teacher in her life, Robin has written her story. If you would like to connect with Robin, she can be reached at raphelps2@yahoo.com

Purpose/Hypothesis

“Two in One: Once a Twin, Always a Twin” discusses twin separation. This project covers the differences in ages of twins when the separations occur. My hypothesis is while no matter when someone’s twin dies, it is an extremely difficult loss; however, because Adult loss twins had the time to develop and nurture their relationships, their losses have a greater impact than Early loss twins’ losses.

Background Information

I pursued this project because of a personal experience. My identical twin and I were born just under 26 weeks. My twin, Jacqueline, was 1 lb 14 oz, and I weighed 1 lb 4 oz at birth (and then was less than 1 lb at a week old). Jacqueline survived 27 hours. I have wondered why I am here and she is not.

At birth, there were many complications and doctors told my parents I would probably not survive and that if I did, I would have serious medical problems; it is amazing I am alive and healthy. Yet, losing my twin has been very difficult for me; half of myself is gone. This is a loss that will be with me forever.

I decided to locate some of the doctors and nurses who fought so hard for the survival of my twin and me. Learning about some of the diseases my twin and I endured has helped me tremendously. Meeting other twinless twins has been amazing because they “understand” me completely and accept me as I am.

As a result of Jacqueline’s death, I am extremely compassionate towards others. I volunteer at UCSF Intensive Care Nursery (ICN), which shared physicians with Mount Zion (where I was born). UCSF and Mt. Zion merged ICNs in recent years. Volunteering at the ICN is important to me because it gives me opportunities to help other premature babies fight for their lives and to step outside myself and share my gift of life and love with others.

Materials

For this project, I used:

  • The Computer
  • Internet
  • Survey Responses
  • Procedure/Method:

I searched online for twinless twins, and when I found names and messages (posted on online guestbook websites), I emailed them. After exchanging emails, I sent them six to nine questions (depending on what ages they lost their twins), including how it is for them to know they are twins and what happened when their twins died.

I was sent numerous emails from twinless twins and I was able to use the 43 surveys and stories I received to complete the study of twinless twins and the impact the loss has on their lives. Using a speadsheet, I categorized all of the data I got from other twinless twins. These categories included: name, male/female, identical/fraternal, age lost twin, circumstance of loss, and present age. I received seven (7) responses from males and thirty-six (36) responses from females. Fourteen (14) twinless twins were fraternal and twenty-nine (29) twinless twins were identical. I grouped the responses by using folders; these folders included: Early loss (in utero to three years), Childhood loss (four to twelve), Teen loss (thirteen to nineteen), and Adult loss (twenty and older).

After I reviewed each response and put the email in the appropriate folder, I found the common ground of the loss (i.e. teen loss). I used the analysis of each category’s loss to come up with common ground for overall twin loss.

Results

I am not an expert, but I do have personal experience in this area of study. I have reviewed each twinless twin’s response and read it carefully and with understanding. Additionally, I found it difficult to graph results and rate each loss on a scale of 1-10. There is information and my findings for each category below.

Early twin loss

I received eleven (11) responses from early loss twins. It is sad for this group of twinless twins to know that they were and are twins – just never having the opportunity to grow up with their twins. As the Early loss twins got older, each twinless twin understood the situation better, but it made some people depressed, sad, and curious about the whole situation. Many wonder about all the things and memories that could have happened. One twin writes, “I miss her every single day and I am constantly curious about how life could have been with her.” Many have numerous questions about why the death of their twins happened so soon. Eight out of eleven twins had parents who did not acknowledge that they were twins and their families were not and are not supportive in any way. For early loss twins, there is a feeling of having an obligation to live on their twins’ behalf. Throughout all of these twins’ lives, they have felt a deep loss. Early loss twins feel like they are searching for best friends but they can never, ever find someone to fill in that “missing puzzle piece.” This loss is difficult because for many, there are no memories or pictures. They were given the gift of being twins, and then it was ripped away so soon after birth. “Survivor’s guilt” is common among Early loss twins. They feel guilty because they survived and their twins did not. According to Dr. Elizabeth A. Pector, “Mirror fascination starting at an early time in infancy has been noted by many parents, especially those with surviving identical twins.” One identical twin expressed that when she looks in the mirror she always has a feeling as if she is looking at two people. Early loss twins have a difficult time talking to their parents about their twins, but they find that their moms do support them. They find comfort in writing poetry or reading, and many talk to their twins. One early loss twin writes, “I think talking about it helps slowly. And emailing other twinless twins who have lost their twins as babies or before birth helps. I think it’s different for the twins who never got to know their twins… the wondering, not knowing can torture you. But I know I’m not alone, and that does help some.” Many have written something similar – “Every evening before I fell asleep I’m talking to him, I can feel him. And most beautiful is to know that I will be together again with my twin after my time is over on earth…”

Childhood twin loss

I received five (5) responses from twins who lost their twins anywhere from the age of four to twelve. These twins feel honored and blessed to be a twin; but they also feel sad because they miss their twins. “It was great been a twin, always had play buddy. It’s like having a friend for life that never lets me down,” one twin writes. Some twinless twins are able to talk to their parents, but others are not able to. A couple twinless twins have cut off all contact with family because of abusive situations. Other twins have supportive family and friends in the sense that they don’t say anything insensitive; however, they really don’t truly understand twinless twins’ lives and the twinships and twinlosses. Twins describe the impact of their loss being they have a feeling of total emptiness. One twin describes, “We were best friends, constant companions, day and night, we were very close. When she died, I became a loner, a deep thinker. At age 16 I had to heal, and it was too young when she died. I had to go back to that day she died and start over in a way.” Childhood loss twins try and remember every detail of each event that happened. They feel a great sense of responsibility and obligation to live life to the fullest. Some twins have great memories of their twins, but when their twins passed away, they were upset. “I was angry for a long time. I have always felt the loss and it still hurts. I have regret because of how different my life might have been if he had lived,” one twin comments. Writing, talking to people about their twins, and spending time talking to their twins are ways they find peace and comfort.

Teenage twin loss

I received five (5) responses from twins who lost their twins in their teenage years. “We were each other in two separate bodies, but one in spirit,” several twins acknowledge. Teen loss twins truly grasp the meaning of being a twin. They understand that their twin was and is a huge part of who they were and are. “I believe that you see true beauty in life through the hardest times. Because I had my twin and then lost her, I have a true sense of what beauty is in life is. Our twin love and the sadness we both felt when we parted makes me appreciate everything I have, even if I am truly sad at times.” They had that one person they loved and trusted and was there for them no matter what. They twins did everything together – “I wouldn’t go anywhere, not even to parties, without her,” one twin comments. They had a truly special and unique bond – their closeness they shared was remarkable and some of them commented that it is hard to describe the closeness they felt with their twins. Their twins taught them love, compassion, truth, and loyalty. Some twins got depressed when their twins died and they cried themselves to sleep. They make scrapbooks using all of the pictures they have; or, they talk to their twins or play their musical instruments – these activities bring them comfort. Family is very supportive – twinless twins say that their families will always be there for them. One twin writes, “I think I took her presence for granted. I always assumed she would be there with me. You go through life and you always forget how precious life is and that it can be gone in an instant. I have read where twins have their own language, and we had our own little language. I miss those quirks. When she was here, I felt complete and now I am half dead.” All of the twinless feel like half of themselves is gone.

Adult twin loss

I received twenty-two (22) responses from adult twinless twins. “I took it for granted in that we were the only two children. She was my sister. She was always there,” one twin comments. Twins said that they did everything together – from elementary school to adulthood. They would call each other for no reason. “We could finish each other’s sentences and thoughts. We would describe stories in the same manner (our family told us this) all details, expressions, mannerisms exactly the same,” a twin writes. Many twins attended the same college and roomed together during those years. They had each other to turn to and the majority of the twins liked all of the same things, which made their lives great. When their twins died, their worlds stopped and they did not know how to go on. They experienced identity crises. Some had panic attacks; the majority of twins suffered (and/or still suffer) from depression and they have gone and/or are still in therapy/counseling. One twin expressed, “When he died, I was absolutely gutted and still am. I felt a small identity crisis when he died. People say that when you lose an identical twin it is like losing an arm. This is true but I also feel that a large part of my soul died with him.” They feel obligated to live their life for their twins. To cope with the losses of their twins, they keep themselves busy, write letters to their twins, and take one day at a time. Some of them turned to alcohol and then realized that was not the best way to cope. A couple of twins talk to their twins and ask them to be with them on special days or when they drive alone in bad weather. Family is extremely compassionate. One twin writes, “I have a very supportive family; I would have committed suicide if not for them.” Twins remarked that it was such a blessing to live life with their twins. “I would say that my greatest joy in life was being a twin but it was also my greatest loss.”

Common Ground Among Early loss, Childhood loss, Teenage loss, and Adult loss

There are several similarities among the twin loss groups. All twinless twins feel that it is a blessing to be a twin; yet they all feel half of themselves is gone. Journaling and writing about or to their twins is something Early loss, Childhood loss, Teenage loss, and Adult loss love doing. For the most part, family is very supportive, although they acknowledge they don’t know what it is like to be twinless because they are not twinless. Twinless twins find comfort in talking to their twins and they believe they will be reunited with them in Heaven.

Conclusion

My hypothesis was correct. No matter when someone’s twin dies, it is an extremely difficult loss; however, because Adult loss twins had the time to develop and nurture their relationships, their losses have a greater impact than Early loss twins’ losses. Early loss twins struggle from the beginning of life – they ask numerous questions and always live with this feeling of incompleteness. They find it difficult to describe the impact the loss has had on their lives and they find it a challenge to communicate their experiences and feelings with people who are not twinless. Yet, because Adult loss twins had a number of years to develop and maintain strong twinships, they are more impacted by the losses. Many go into a deep depression and they question their identities. The results showed exactly what I wanted to test. No mistakes were made because this project involved connecting with other twinless twins and communicating with them. I would not do anything differently – this project was challenging, but having the constant communication with twinless twins and discussing their experiences was amazing for me. The results did not stimulate any new hypotheses. If I had had more fraternal twin responses, I might have been able to compare identical twin losses to fraternal twin losses, but with the results I was given, this was the best hypothesis.

Bibliography

1. Guestbook, Online (Brenda, twinless twin)
http://bradstwin.tripod.com/guestbook.shtml
(found messages and emails from twinless twins and contacted them)
2. Guestbook, Online (Karen, twinless twin)
http://dreamofyou.twinstuff.com/fsguestbook.shtml
(found messages and emails from twinless twins and contacted them)
3. Guestbook, Online (Linda, twinless twin)
http://www.geocities.com/HotSprings/Spa/7546/geobook.shtml
(found messages and emails from twinless twins and contacted them)
4. Pector, Dr. Elizabeth A. family physician
http://www.synspectrum.com/survivors3.doc
(Early loss twins and mirror fascination)


“Two in One: Once a Twin, Always a Twin”

I was inspired to pursue “Two in One: Once a Twin, Always a Twin”, a study on twinless twins, because of a personal experience. Seventeen years ago, my identical twin and I were born just under 26 weeks. My twin, Jacqueline, was 1 lb 14 oz, and I weighed 1 lb 4 oz at birth (and then was less than 1 lb at a week old). My head was smaller than the size of a tennis ball and a wedding ring could slide all the way up to the top of my thigh (see picture below). Jacqueline survived 27 hours. I have wondered why I survived and she did not. At birth, there were many complications and doctors told my parents I would probably not survive and that if I did, I would have serious medical problems; it is amazing I am alive and healthy. Yet, losing my twin has been very difficult for me; half of myself is just gone. This is a loss that will be with me forever.

This past summer, I decided to locate some of the doctors and nurses who fought so hard for the survival of my twin and me. I connected with one of my dear nurses, and she and I spent a day together at the Intensive Care Nursery (ICN) at University California San Francisco (UCSF). I was surprised to meet one of my doctors from 17 years ago while I was there. Since August, when we reunited, we have gone to breakfast. I have been searching endlessly for answers about why things happened the way they did. One of my thoughtful and caring doctors has taught me about some of the diseases my twin and I endured; his assisting me has helped me tremendously.

I would like to give my deepest thanks and appreciation to my Physiology teacher, Mr. Jon Dick. You brought this project to me, talked to me about it, and then you showed an amazing unconditional support and care. This means the world to me. Throughout the entire experience, you were there for me. What a blessing you are in my life.

I volunteer at UCSF ICN, which shared physicians with Mount Zion (where I was born) – UCSF and Mount Zion merged ICNs in recent years. Volunteering at the ICN is important to me because it gives me opportunities to help other premature babies fight for their lives and to step outside myself and share my gift of life and love with others.

Meeting other twinless twins has truly been a blessing. They understand me and it is comforting to know that I am not alone. It is amazing to communicate with other people who have been through and are living with such a similar tragedy.

I would like to acknowledge all twinless twins who assisted me in my project. What a joy it has been to correspond with each of you and to hear your experiences and stories. You have all been so supportive, understanding, and loving and I thank you from the bottom of my heart.

 

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Twin loss story

Was just messing around on my computer and found your site. I am a 51 yr. old male who lost my identical twin brother due to a car wreck 30 yrs. ago. The years that followed the loss were hell.

I turned to alcohol and drugs. I did not grieve, but tried to prove that I could be both of us. I caved in! 17 yrs after Joe’s death I knew I couldn’t go on. I joined A.A.and have been sober for 12 years using the 12 steps and meeting other twins in the program who had gone through the exact same experiences.

I have allowed myself to go through the grieving process, and turn the whole experience into helping others. I now have a wonderful full life. It took some time, growth, and a lot of understanding friends. Hope my story of loss can be of help to someone.

Thanks, Gene Gallagher

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Reading List for Surviving Co-Multiples

WHO MOVED THE SUN?, A twin remembers, Ron McKenzie, D.E.M. Publishing, paperback, 94 pages

We know multiples are bonded in the womb and research has shown that they are aware of each other certainly by 18 weeks gestation.  The bond they have with each other is well established before any bonding with their parents, which occurs after birth.  Multiples have a unique relationship and are usually very in tune with each other, especially monozygotics (identicals).  While dizygotics (fraternals) are basically siblings born at the same time, they too have a special connection and it isn’t recommended that anyone interfere with that relationship either.  Multiples arrive together but it is quite unlikely that they will depart this earth together.  We need to understand what it is like for the survivors and how better to support them as they make the adjustment to the loss of their “other half.”

It has taken a long time before healthcare professionals, counselors, doctors, funeral directors, and others have paid particular attention to the unique relationship between multiples and thankfully this is changing.  It is changing because surviving co-multiples are writing about and sharing their feelings, pain, guilt, emptiness and sense of despair at losing their co-multiple.  Such survivors have come to be known as Twinless Twins or Lone Twins.

Ron McKenzie’s book about his relationship with his monozygotic brother, Don, and his brother’s death at age 62 years in 2008 is one of those books that clearly sets out the dynamics of a multiples’ unique relationship.  Ron shares his pain, love, and details of their relationship and what it meant for both of them.   Succinctly, Ron shares:  “You may be in heaven, Don, but I am in hell.”  It is not an easy step from spending a life time as “we” and having to become “I.”  When 61 birthdays have been shared, when shaving in the morning becomes a painful memory of losing Don, and the treasures of texting each other or speaking on the phone each day are no longer an option, no wonder it feels like ‘hell.’

McKenzie’s book is a must-read for a first hand account of not only a tribute to a much-loved twin brother, but an eye-opening journey to better understanding what it means to lose a co-multiple, the consequences and the loneliness while still trying to continue on.  Only by understanding when it means to lose your co-multiple can we, as a society, reach out to better offer help, resources and support.

  • The Survivor , Lynne Schulz, 2003, Pleasant World – with Foreward by Lynda P. Haddon
  • Living Without Your Twin , Betty Jean Case, Tibbutt Publishing
  • The Lone Twin: Understanding Twin Bereavement and Loss , Joan Woodward, 1998, Free Association Books
  • The End of the Twins: A Memoir of Losing a Brother, by Saul Diskin, The Overlook Press
  • Twin Loss: A Book for Survivor Twins, by Raymond Brandt, Courier Printing Co.