It’s finally time to share my story by Mandy B

It’s finally time to share my story. Life has thrown many challenges at me- ruptured tubal pregnancy at 27 and almost died, kidney cancer at age 29 (almost always fatal but I’m still here) and then a diagnosis of Ehlers-Danlos Syndrome. More about that last one later.

Life has an unusual way of unfolding. When someone says “I wish an interesting life for you”, usually to their enemies, boy have I ever had an interesting life! Even at my age, I am constantly learning and looking for something. The CNBC group came to me at 66 years old. You cannot imagine the comfort I get out of knowing every thought, feeling and sadness that I had is shared by this wonderful group of sisters.

Trying to have children, I had 5 miscarriages, and one almost killed me. I still get that look from doctors that believe they were terminated due to the high number and the fact that I don’t have children. I kind of look like a cleaned up version of a hippie with long hair and flip flops and I imagine they can’t understand why any woman doesn’t have children. Even though hey are doctors and should know better! That does make me sad. My current OB/GYN is fantastic though. She never fails to tell me how I inspire her and how she thought of my strength when she had to have surgery. I wish you could all have a doctor in your life like that.

When I was young, having kids was the farthest thing from my mind; I didn’t want them!

Then when I married a man I fell in love with at first sight, children were back on the table. We tried and I almost died. I lost a fallopian tube and an ovary. This made getting pregnant more of a challenge but other women seemed to have no problems with that. I became resentful and envious of them. I believe that’s a natural feeling but it did not rule my every thought either. I felt disappointed in myself though.

When the kidney cancer came at 29 the stress of almost dying (again) was too great. I moved on to marry my caretaker. We also tried really hard to have children, both having corrective surgery. Nope. Nothing happened. Month after month after month, just like others who are reading this. The disappointment was just awful and I felt a little part of me die each month my period came. And I was so angry. Why me? Why?

This was an absolute horrible time in my life- the waiting, my friends popping out babies seemingly at will, babies abandoned by young moms or moms with too many kids who just couldn’t cope. My pregnant girlfriends and ones with kids gave me pregnancy sewing patterns. I may still have them but I’m just not sure. They were “put away”.

I saw 3 different doctors who could find out why I couldn’t maintain a pregnancy. The not knowing was killing me.

Adoption was never on the table for me nor was IVF. We simply didn’t have the money for that back in the 70s and 80s. Insurance did not cover it and adoption for the self-employed trade we were in would have been impossible. And besides, not everyone wants to adopt. We didn’t.

So I suppose life dealt me an interesting hand to say the least. I went on to law school at age 34 and practiced law for many years in the field of custody, divorce and estate planning. I loved it because I had

lived it. Then a drugged driver rear-ended me at a stop light and that was the end of my career. My neck and jaw were ruined. I had comprehensive body pain and a failed neck surgery. More damn challenges to my life! Why?

I’m 66 now. I no longer cry when I see newborns or pregnant women. I can ignore all the baby craziness out in public and on TV and in movies. I still don’t want to cuddle someone else’s baby- I can admire but not touch. I like to see my girlfriends’ grandkids but have no desire to visit, experience their little germ factories or hold them. It’s not that I don’t like children. They are the future. That maternalism for someone else’s child has never grown in me. I think that’s ok, too.

The last thing my mom said to me before she passed was how glad she was I didn’t have children so we could spend all our time together in her last years. That was very, very healing to me. The amount of pressure family puts on you to have a baby is just awful. So that was pretty darn special. I wish there was some way we could tell our families that we are perfect just as we are and to stop pressuring us because it makes us feel bad or inadequate. I think telling our story helps, don’t you?

I feel at the end of the day that I’m lucky though- I wake up with gratitude every day. I have a good meditation schedule and walk my dogs every day. And I have a reason I think for why I wasn’t able to produce a child.

My mom took DES when she was pregnant with me. This drug was popular with OB/GYN and GPs in the 50s, 60s and even the 70s. It made my uterus and tubes a weird shape and smaller in size. Others have gotten pregnant with that but obviously not me. (DES was a synthetic hormone thought to maintain a pregnancy in women at risk for miscarriage. They know now it didn’t help that but caused all sorts of reproductive problems in women and men later, up to and including cancer of the cervix. So I get checked every year. So far, so good. One of my OB/GYNs said my uterus could have ruptured if I tried to go full term. Wow! That was pretty upsetting at the time.

Still I didn’t have a definitive answer. We do keep looking for those answers don’t we?

So the last part of the puzzle for me, well after child-bearing age, was when my cardiologist diagnosed me with a heart aneurysm and Ehlers-Danlos. I imagine few of you reading this have that condition and I’m glad. It’s leads to all sorts of problems with skin, tendons, eyes, organs, etc.

It’s obvious to me know that there was a different plan for me, to not have children. I would not have wanted to pass on this disease to a child. EDS is challenging every day with chronic pain and chronic fatigue. My spine is basically crushing on itself and I have developed scoliosis due to the instability. Every joint in my body is affected. I’m proud of myself for understanding and accepting this challenge- mild exercise, good whole food and NO narcotics. People with my condition are often on painkillers and every other type of medication you can imagine. I developed inner strength and stubbornness, no doubt the result of the “interesting” life I have had so far.

While I’m so relieved I didn’t have a child I could pass this on to, there are days when I think, “What if?”

I know we all have them. They get farther in between as we age and move forward. Most the time I never think about not having children, even when that’s the first word out of new people who meet you. I tell them, “No I tried but it didn’t work out for me. I have fur kids instead.” I have made new friends and many of them are childless. We never talked about kids and that’s really a relief. We have other shared interests and are closer than sisters. So look for new friends no matter what your age is. They are invaluable!

With time, I have managed to examine my feelings of self-worth, (and yes I’m worthy!), and figuring out where a childless woman fits into our family oriented world. Believe me, there is plenty of room for us! I started working on environmental, neighborhood and political issues. It has been extremely fulfilling. Plus I have always had dogs and cats to explore my deepest confidences with. Loving something outside of me really became possible when I loved myself first and best. I have managed to do that. I hope you will too.

We are worth it! We are warriors! We are brave!

This poem (by Ranier Maria Rilke) helps me; I hope it helps you too. A dear friend gave it to me during a big period of grieving.


Be patient toward all that is unresolved in your heart

Try to love the questions themselves

Do not now seek the answers

which cannot be given

Because you would not be able

To live them.

And the point is to live everything.

Live the questions now.

Perhaps you will then gradually

Without noticing it

Live along some distant day

Into the answers.

Mandy B