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 firstname.lastname@example.org]
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” 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.
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.
For this project, I used:
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.
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.
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…”
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.
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.
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.”
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.
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.
1. Guestbook, Online (Brenda, twinless twin)
(found messages and emails from twinless twins and contacted them)
2. Guestbook, Online (Karen, twinless twin)
(found messages and emails from twinless twins and contacted them)
3. Guestbook, Online (Linda, twinless twin)
(found messages and emails from twinless twins and contacted them)
4. Pector, Dr. Elizabeth A. family physician
(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.
Robin A. Phelps