Boudoir by Debbie Kraemer

Feature Client Zahava

2023 winner of free Boudoir Shoot

Read the full story about


My name is Zahava, and I was asked to share my story. A seemingly simple request you might think. The problem with this request is, I’m not sure where my story begins, or if it even has yet. Does my story begin when I was born? When I got really sick? When I got married? When I moved to Canada? I don’t know. My whole life I have been waiting for my story to begin. Daydreaming and preparing in anxious anticipating for when it might begin. I would cling on to every detail in my mind; how it felt, how it smelled, what I would be doing when it all began, as if I was reliving a nostalgic memory of a time yet to come, a time I would learn might not ever come.

One thing I have always known for certain however, is how my story ends. So, to understand me, who is “Zahava” we have to start at the end.

I didn’t know that I was born into an ending. I was born with a rare gene mutation called ASM. Meaning my life literally was ending from the moment it began. Even though I didn’t know that at the time.

I was born into a family that did not want me, in a town where there was very little hope, in a time where someone who looked like me wasn’t seen as beautiful or worthy.

Call it being head strong or stubbornness, but these were realities I was not willing to accept. I always believed that I was going to do something great with my life. This concept was less of a belief and more of an inevitability in my mind. Not because I thought I was special, or better than anyone else, but rather that I would not stop working until I achieved everything that I had been deprived of growing up. I made a promise to myself very young, that I was going to be someone different than anyone I had ever met, and that I would provide myself with a life worthy of that person.

That promise gave me hope and purpose, and eventually became a part of the fabric of my very being. I was able to keep that promise for a long time, until I couldn’t anymore, and that is what broke me.

It wasn’t giving up an opportunity to be in an Opera company in NYC that I had worked so hard for. It wasn’t having 11 surgeries in 5 years. It wasn’t even being told at 21 that I had 2-4 years to live. It was that my story was ending before It had even begun, and now I knew that. I was all too aware of that. It was that promise that I had made to myself, the very promise that I had become a personification of, was broken, and now so was I.

So, what now? The only thing I could think of was to give myself more time. More time to figure out my next steps, more time with my husband, more time to keep that promise to myself. I just needed more time.

I moved to Canada in 2017 chasing time. Canada had treatment options for my disease, and living in a cleaner atmosphere could theoretically slow down the progression, and it did. After living in Canada for a while my disease went from Aggressive Systemic Mastocytosis to Systemic Mastoycytosis which increased my life expectancy by about 10 years. Great news, right? Everyone around me seemed to think so. However, this is not a redemption story just yet.

Over time I have had to watch parts of me slowly die, and with that version of my future die too. Over 10years, I have had to experience my organs slowly stop working one by one and suffer the long-term effects associated with that. Each time one of my organs began to fail, I had to adjust my dreams around what my body could do, or rather couldn’t do anymore. Over time I had to change the dream so much, that I no longer could envision any kind of future that bearded any resemblance to the original dream.

First it was my stomach and intestines when those began to stop working, I lost the ability to eat most things, and for a long time to be able to eat at all. Not being able to use my diaphragm any more resulted in me having to give up my love for singing opera. Then my reproductive organs. This resulted in multiple surgeries including a hysterectomy. Going through menopause at 20 was not fun.

Next was my heart, my heart no longer can pump enough blood to my brain to support my body. With this I lost the ability to drive, go places on my own without assistance, or walk very far without a wheelchair.

My disease brought so many limitations and robbed my life of so much. I had to ask myself, what kind of future can I have now? Is it a future that I even want? How can I keep the promise to myself that I made so many years ago to provide a life for myself, that was worthy of the person that I wanted to be? I am nowhere near the person that I want to be, and I am unable to provide any sort of life for myself. I ask again, what now? I wish I could wrap up this story, telling you that I found the answer to that question, and that the answer is something inspired and profound. I wish I could leave you with words of wisdom from a dying girl, but unfortunately, I can’t. All I can tell you is that I am still waiting for my story to begin. May be that will happen in this lifetime, maybe it won’t. However, for the time being whenever it gets to be my choice, I will choose a life worthy of the person I always knew I could be.

The name Zahava in Hebrew means one who is golden, or a personification of gold if you will. This was not the name I was born with, but the first gift I was given out of love, by someone who saw me as who I was instead of what I was. Zahava is not what I am, rather who I chose to be. Zahava is not what I am called, but what I answer to. Mastocytosis is not who I am, but it is something I fight with everyday, and most days I lose that fight.

Make no mistake, I did this photoshoot for me, not admiration or sympathy. My hope was that by doing this shoot, I could remind myself that I am still worthy of the name Zahava, even though I am sick, and use a wheelchair. Those things have not diminished my value, but in some ways enhanced it. And that in doing so, I will have kept my promise, just maybe not in the way I had originally expected.

The person who gave me the name Zahava told me, that they see me as someone valuable, like gold. They said they hope that someday I will be able to myself through their eyes.

When Debbie chose me to do this shoot, she said something quite profound. She said I didn’t choose you because you are in a wheelchair. She said 6 simple words that spun my world on its axis, she said “it just had to be you.” Doing this shoot and seeing myself through her eyes reminded me of not what I am, but who I have always been. Someone who I had lost sight of in the midst of all the pain I have suffered. That’s the real gift she gave me that day. I hope that person is who you see when you look at these photos.

I am still waiting for my story to begin, and when it finally does, I hope I can look at myself with love and say “Zahava, It just has to be you.”


New Brighton, Calgary, Alberta, Canada