My phone lit up with Kristen’s number and a wave of panic ran through my body—it was one of those moments when you know something is wrong.

I was with my family on vacation in Dallas and back home in Los Angeles my best friend Kristen had just given birth to her second child, a beautiful baby girl named Remi.

I answered the call, swallowing heavily, “Hello?” Through the line, I heard my dear friend sobbing hysterically.

I flashed back to sitting on Kristen’s living room couch only the day before and meeting precious little Remi for the first time. Kristen was telling me how her back was still in great pain and how her right foot had now gone numb. (At the end of her pregnancy, her back started to hurt, and everyone, including doctors, thought she was having sciatica pain, a common pregnancy symptom.)

Now, I listened to her crying on the phone and had a strange sensation move through my body—something akin to a slow sinking ship with no escape.

“What happened?” I asked, already knowing it was something terrible. My friend managed to sputter out through her tears, that she had an MRI and that something was wrong with her spine. Maybe a tumor or maybe a blood clot?

They didn’t know.

She had just seen a specialist and needed to go to the hospital immediately for surgery, otherwise, she risked losing her foot or leg. I tried to make sense of her words…

I moved the conversation outside, away from the noise of my one-year-old daughter playing with her cousins, and passed my brother-in-law, Patrick. I will never forget this moment, as Patrick smiled at me (having no idea what message I was receiving) and held his gaze a little extra. After a moment, I felt warm, silent tears slide down my face.

Time stopped, sounds muffled—I knew right then that things would never be the same for my friend.

I told Kristen I was flying back to LA and would be there the next morning to help. I had never been away from my daughter and felt sick having to leave her in Dallas with my husband. But, I was Kristen’s person, and in the decade we had known each other, I had been like a big sister and mom to her. She could lean on me and now needed me, and I needed to be with her and her children.

The next few days were a blur as Kristen was immediately admitted to UCLA Hospital for emergency open spinal surgery, her sweet husband, Owen, by her side. I arrived the next day and my heart sank seeing her lying helpless on the bed, hooked up to machines and IVs. A nurse was standing over her pumping her breast for milk, trying to keep up her supply for whenever she would be allowed to nurse Remi again (milk leaking all over her hospital gown and bed.) When Kristen saw me enter, her lip began to tremble and tears streamed down her face.

I had been through so much with this dear girl. She had life problems like everyone else, but she walked through them with so much mindfulness and integrity. I was in awe of her.

I watched her work her ass off to recover from an eating disorder that nearly killed her; when she got her very first job; while she dated Mr. Wrong after Mr. Wrong; while she finished law school and passed the bar; when she discovered yoga, did her yoga teacher training and then went on to become an excellent yoga instructor; when she fell in love with her life mate (that she met in her yoga class); while she planned her wedding; while she dealt with fertility issues; while she published a yoga book; while getting pregnant and then having to deal with the stress of having a son that did not stop crying for the first year of his life.

Everything Kristen had walked through, she consciously used to become a better person. Now, this beautiful person was lying in the hospital, covered in breast milk, waiting for spinal surgery.

Their five—day—old baby girl was with Kristen’s sister and their three—year—old son was with the babysitter. Kristen was heart broken about being away from her kids.

That seemed to upset her more than the fact that she was in the hospital about to go into surgery.

She asked if I would take Remi while she was in the hospital saying, “I know you will love her the way I love her.”  I tried to imagine what it would have been like if someone else had to take care of my daughter when she was only five days old.

My heart broke open a little more and I felt leaden sorrow leaking out.

Kristen did come out of her spinal surgery, and we learned she had a rare disease called, Cavernous Angioma, for which there is currently no cure. The Angioma (kind of like a blood clot) in her spine had bled had caused her back pain and the numbness in her leg.  Some people live their entire life with Angiomas (that do not bleed) and they never even know it.

Kristen considers herself lucky and thinks that she had a miraculous recovery. Although she spent months after her surgery in a bed, her life as she knew it, would never be the same. She lost all feeling in her right foot and suffered some neurological problems. Eventually, she had to have around the clock care and full time help for her infant and toddler.

Then, after a body scan, the doctors told her that she had 20 of these Angiomas, abnormal legions, in her brain and brain stem. Twenty angiomas that could burst at any moment, sometimes without any sign or symptom, leaving neurological damages or, God forbid, causing death.

It has been almost three years since her diagnosis, and daily, she lives knowing that an Angioma could burst in her brain stem at any time and possibly kill her. Yet, every day, Kristen chooses hope. She chooses to believe in life. She chooses to believe that a cure will be found. She has also decided to be proactive in the search for a cure for this disease and has become a board member on the Anigoma Alliance, fighting for legislation to support and fund research to find a cure.

About one in 150 people have cavernous malformations. 

Some Angiomas may come and go.  

Most people never even know they have them!

About five-tenths of a percent of the world population is affected by cerebral cavernous malformations.

About 25 percent of people with cavernous malformations in the brain never have symptoms.

Cavernous malformations often run in families and there are genes that are linked to a risk of these unusual formations. When baby Remi was having some issues with vomiting (possibly showing a neurological symptom), Kristen and Owen had no choice but to have their kids genetically tested.

Thankfully, both kids do not have the “Angioma gene” (the sigh I released when hearing this news could be felt for miles.)

If you saw Kristen at the park with her kids, you would not know that anything was different about her—that she had this rare disease, a silent secret that makes her reality different than most. And, that every time she hugs her children, she has an awareness that it could be the last time.

Yes, this is true for all of us as no one is promised tomorrow. However, I do not have a life threatening rare disease. Because of this, I get to wear life loosely. I get to have moments with my kids that are free and without a shadow of dis—ease draping over me.

Every time I talk to Kristen, I hear how bravely she faces her reality and I wish I could do more to help. Her right foot, which has no feeling, constantly has open wounds and takes forever to heal. Whenever she gets a headache, she fears maybe one of the Angiomas in her brain may be bleeding.

Scientists are actually close to finding help for this disease and there is a drug that looks very promising. However, because the drug is primarily used for more common problems, the drug company will not fund research in regard to Cavernous Angioma, as it is rare and won’t yield as much profit.

In the meantime, Kristen carries on and deals with the anxiety that surfaces just trying to do everyday things—like drive her kids to school. She blew me away when she told me that, in addition to her therapy, she enrolled in a meditation group and was meditating every single day to help process her feelings and calm the anxiety.

She was choosing to sit and be with what is, which is not the easy way out.

This is a way through.

This is a way to acknowledge truth and make space for the courage to live life to its fullest. A way to calm the fluctuations of the mind and find perspective and clarity.

When we “sit,” we can tap into a deeper reservoir of strength and power that is not readily available if we are simply fluttering through life from one thing to the next.  Within the discipline of following the breath, we can access a force that quiets the dis—ease. We tap into a knowing that we are all the same. Everyone, on some level, experiences dis-ease. And everyone, on some level, can experience peace.

I’ve watched Kristen use her yoga and meditation as a tool to help her cope. I’ve seen her create space, so that she can feel some peace and then be in her life. Be with her kids. Taking action to be a part of finding a cure for her disease.

Helen Keller said, “The best and most beautiful things in the world cannot be seen, nor touched…but are felt in the heart.”

Within our yoga traditions, we greet and say, “Namaste.” The light in me sees the light in you. The divine spark within me, honors the divine spark within you. Our hands rest at the heart and we bow the head. There is a deep respect felt that acknowledges how we are all connected.

In those moments; within a yogic greeting, within a deep meditation and within the expression of compassion, we feel how we are all the same. We all have a struggle and we all have an infinite capacity for love.

Kristen’s story and the dear people and children that live with this disease, exude so much beauty and courage and love. I am inspired and moved to take action in any way I can to support and help…

I want drug companies to wake up and start fighting for people instead of fighting for profits.

I want my friend to live a long healthy life.

And, I want her to watch her children grow up, fall in love, live their story and be part of changing the world for the better.

Just like their mom.

We all want this, because we are all Kristen.

“The sun shines down, and its image reflects in a thousand different pots filled with water. The reflections are many, but they are each reflecting the same sun. Similarly, when we come to know who we truly are, we will see ourselves in all people.”

~ Ammachi

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Editorial Assistant: Jessica Sandhu/Editor: Bryonie Wise

Photo: Tom Bell