The end of life space is one that has been shrouded in mystery, mainly since we simply do not talk about it. That's why we at Eirene have started the "Intimate Conversations on Death" series. In this series, we spend time chatting with people in the end of life space, to learn about new perspectives and offer new ways of navigating and discussing death.
In this second instalment, we speak with Beverley Smyk at The Twinless Twins Support Group International (TTSGI).
Let's read on to learn more about Beverley's experience and the underlying principles of the Twinless Twin support group and their work in this space.
For us at Eirene, we’re looking to understand all aspects of the end of life space, and we were particularly intrigued by your support group. We’d love to hear a little about how this group came to be, and why the work that you do is so necessary?
The Twinless Twins Support Group International (TTSGI) was founded in 1987 by the late Dr. Raymond Brandt who also was a twinless twin having lost his identical twin brother many years earlier. He founded TTSGI in an effort to support other hurting twinless twins. This organization provides a safe and compassionate community for twins or other multiples who have lost their twin due to death at any age - either in utero, as infants, young children or into adulthood. Everyone involved with TTSGI is a twinless twin.
There are a myriad of grief support groups out there but for a twinless twin, TTSGI is the only support group where everyone in the group can understand and relate first hand to their pain and grief because we also lost our twin and we know all too well what they are going through and that gut wrenching pain they feel – there is no "imagining" what their loss feels like, we feel those exact same roller coaster emotions and feelings.
Sometimes when someone shares their pain, they are speaking for all of us…we share the same feelings and I know for me; I say to myself so many times "yes, that's exactly how I feel, I couldn’t describe it any better."
We connect with each other in a way only another twinless twin can and our sense of trust among each other is felt immediately because we know and understand each other's loss and pain. In our group, a twin can often find another twin who also lost their twin in the same way, often around the same age and that makes the connection that much stronger. Also, we share about our healing process and newly twinless can find hope that they too can experience healing.
Can we dive a bit into the actual experience of those who have lost a twin? Could you give us some insight into what is the unique experience that twins face when dealing with grief and a loss as monumental as the loss of a twin?
You describe our loss quite accurately as "monumental". For me personally, losing my identical twin sister is the biggest loss I have ever experienced in my life and I've lost both my parents and a few other loved ones. It is unlike any other kind of loss because I believe it's the bond we formed even before we were born and to have that bond physically severed, when that's all we have ever known, its quite traumatic and literally feels like you lose part of yourself, part of who you are.
Us twins would say that losing our twin hurts longer, more intense than that compared to say losing a sibling or parent or other loved one. It's not a loss that you can just "get over", like some people would say, for us we have to now learn to live in a new world, it's like our life if now in two parts – life before our twin's death and life after.
Birthdays are never ever the same, personal accomplishments and milestone celebrations are never a wholehearted happy occasion because we are always reminded that our other half is not here to share In our joy. For some of us, the anxiety we experience with upcoming birthdays and the anniversary of our twin's passing is sometimes like losing our twin all over again. Some of us twins even question if we are still a "twin" after our twin dies and for that reason one of TTSGI's motto is "Once a twin always a twin".
We’ve heard a little bit about the experience now - can you shed a light on survivor's guilt in twins? What is this experience and what is different in the case of twins than with other loss?
Oh, survivors' guilt is a big one and so many of us experience this. I still feel that guilt, even after years of therapy, because I often wonder why her and not me when we were both in the same car crash. The guilt makes me feel like I have to make my life that more meaningful, I feel like I have to live life for her too because she was robbed of her life at a young age and I owe her that, to live the best life for both of us.
Some twins feel like they can't live up to the expectations of their families and are always a reminder to their families of the loss. Some twins who lost their twin to disease like cancer, often can't understand why they are healthy and their twin, who shares the same DNA is stricken with illness that leads to their death. So many early loss twins share how they feel guilty that maybe they were the reason their twin didn’t survive to birth or passed soon after because they may have taken all the nutrients in the womb and that's why their twin died.
For twins who lost their twin to suicide, the survivor's guilt is so much more insurmountable because they often question why and how come they didn’t know how their twin was feeling, what their twin was thinking and going through mentally and emotionally. How could they have missed the signs…so many questions left unanswered.
Is there a difference between early twin loss and general twin loss? Can you share those differences with us? Is identical twin loss different than other twin losses?
I don’t believe there is any difference in the dept of pain early loss twins feel verses late loss twins. The bond is already formed before birth, so the loss is felt very deeply regardless of when we lost our twin. I know many early loss twins who describe their grief very similar to twins who have had their twins for many years.
What I would say is different is that early loss often has no or very little memory of their twin, have nothing personal of their twin to hold on to, no stories to share, all they have is this longing for the lost twin they grief for. For me, I am so envious of twins who have had their twin into adulthood and celebrated each other's successes and comforted each other in times of sadness, celebrated marriages and motherhood with their twin because I didn’t get to share those milestones with my twin.
But when I think of early loss twins, then I feel so grateful to have had my twin for the years I had because I have memories, I have some of her personal things and I can hear stories shared by others of her. As for identical twin vs fraternal twins, the loss is no different, again, I believe the bond is formed before birth so regardless of identical or fraternal I don’t see a difference. My fraternal twin friends share the same grief and feelings and emotions I do from losing my identical twin.
We’re interested in learning about the support process. How can families support the surviving twin? What resources does the TTSGI provide?
TTSGI offers several ways to find support. On our website you will find a number of resources for twin loss including audio files from past conferences, book recommendations and articles.
There are regional meetings held throughout the year as well as a national annual conference. TTSGI also publishes a quarterly newsletter where all twins contribute sharing stories and photos about their twin or to simply share how they are progressing in their grief and also to share their healing stories. We also have a Facebook support group page of more than four thousand twinless twins who connect with each other on a daily basis.
Twins are welcomed and often encouraged to bring a support person, either a spouse, partner, family member or friend to any of the regional meetings or conference so they can get some insight into our unique loss and grief and better understand our loss so they in turn will be better equipped to offer the support we need.
Do you have any recommendations on books/resources for twins that are grieving?
My best recommendation is to join TTSGI and become a member and use the resources that comes with membership including full access to the website for book recommendations, audio files and articles, attending regional meetings and the annual conference.
Join the Facebook group support page and connect with other twins and you will find that slowly, but surely, the fog of grief will lift, and you will find healing.
Free Twinless Twin resources:
The Twinless Twins Support Group International™ (TTSGI) provides a safe and compassionate community for twinless twins to experience healing and understanding. TTSGI also provides support for twins and other multiples who have lost their twin due to death at any age.
We provide support to twinless twins through regional meetings, national conferences, and educational resources. As a community of grieving twins, we shed light on difficult questions unique to twin loss.