“For five years, I’ve been afraid to go to sleep at night, worrying that she won’t be there when I wake up. I’m tired,” Gracie says. I’m not sure how to respond. I can feel the sadness and pain inside her that no words can possibly ease.
“I’ll be at your graduation,” I promise her. And, of course, I will.
I drop her off and drive back to Santa Barbara very early the next morning, where Ellie wants to know everything Gracie and I spoke about in the car. I assure her that Gracie was okay when she left.
“Don’t worry. I’ll be at her graduation and decorate her first apartment with all your stuff when she moves back to the U.S. in June,” I say, holding back my tears. “I promise.” Ellie’s husband, David, is arriving from Paris today. I will never forget the smile on her face when she sees him walking in. It gives me goose bumps and I do everything I can not to burst into tears and have a meltdown. All the turbulence that their marriage has endured during this nightmare is forgotten in this moment, and all that is left is the pure love they’ve shared for so many years. David is my hero. His commitment to Ellie is that of a good, old-fashioned man, a love story that I always knew existed but haven’t had the pleasure of experiencing myself yet.
Even in these final days, Ellie is still trying to boss me around, making sure we put her in the right outfit for her passing and telling me she wants to wear the latest Chanel nail polish that someone had gifted her. Most people wouldn’t think about these things at this point in the game, but Ellie does because that’s what makes her Ellie. Always into the finest details of everything, she is going to leave this planet in style and with grace. Sticking to my word, I polish her nails one final time, leaving out the middle finger on her right hand because it’s connected to the oxygen meter. As I polish them, she opens her eyes and gazes at me with so much love. At this point, we’re communicating in a higher consciousness, and I know what she is thinking without speaking.
“I promise that I won’t send you off with nine painted fingers, missie,” I joke with her. She responds with a tiny smile. I feel so much empathy and admiration for her beautiful little hands that have been paralyzed for so many years. They look frail and hardly recognizable from the memory I have of her strong hands on the steering wheel of her navy blue Range Rover.
My girls are working in Europe, but Gigi contacts me by FaceTime from Paris and Bella from London. I’ve been talking to them, and they know the end is near. Our friend Holly takes charge of hospice, and nurses come in and out of the cottage. The moment we prepared for, for so many years, is finally here. Breathing and speaking become harder and harder for Ellie, and her voice is getting weaker as the days pass. She is slipping in and out of sleep. Sometimes, she opens her eyes when people come in and out to say their good-byes, but I can feel her spirit starting to distance from us. Amy, the priest from next door, comes in periodically, and we pray in a circle around Ellie. In the past week, we have formed a tight group of three, and our distinct, unspoken tasks run in perfect harmony. In normal circumstances, you wonder how you would let go of someone you love so much. But right now, deep in my heart, I know this is the right thing. Ellie deserves to go in peace and get out of the body that has drastically failed her. I feel a lot of clarity. I’m not afraid and find great strength in the commitment of our friendship. I always promised her I would be by her side when she takes her last breath. I don’t want her to be afraid, so I keep whispering in her ear about the beautiful vision of passing we often discussed.
“Just let go. The doors to heaven are right there in front of you. You can see the light,” I whisper with confidence. “I love you, my sweet angel. Please rest assured that Gracie is well and will be taken care of. Just let go.”
Her breathing is starting to slow down, and finally in the late afternoon of Tuesday, August 30, Dr. Baker checks her pulse and confirms that she has passed on. It’s a defining moment, but I feel much gratitude for being able to have guided and supported her through these final hours of her life. I did what I said I would and held her hand until she took her last breath and arrived at heaven’s door. Even though her death means that she is finally free from suffering and her passing is peaceful, it’s hard to understand in this moment, let alone imagine my life without her. This is a great loss to both me and my children, who loved her very much. They always visited her when they were working in Paris and have been part of her journey since the day she was diagnosed with ALS. But I am in survival mode. Holly calls the funeral home, then asks the family if they want to wash the body before she gets picked up. They decline.
“I guess we’re the ones to do it,” I say to David and Holly. It’s a scary thought, but it’s the right thing to do. We carefully pull out her breathing and feeding tubes and take Ellie out of her sweaty pajamas. It’s not until I see her naked body that I truly understand the truth about this ravaging disease that took her life so brutally. It’s a shocking vision that I will never forget. We wash and dress her in her favorite pajamas, and I paint her tenth finger and brush her beautiful golden locks. Holly, David, and I just stand there and stare at her. It’s a strange relief to finally see her lie flat on a bed without being propped up with special pillows and attached to any machinery, something we haven’t seen in five years. What a journey. My bestie is a true hero, and if I ever have the blessing of a healthy life myself, I would love to write a script about her life because it’s a story that must be told. Watching ALS so closely destroy my best friend is the worst thing I have ever experienced.
August 30, 2016
RIP and fly with the angels, my love @ellieod. Thank you for sixteen great years and showing me the meaning of true and loyal friendship until your last breath. You are my hero and will live in my heart forever.
#Alswarrior #MyBestFriend
It’s not until I get in the car late that night and drive down the 101 South back to L.A. that the loneliness and deep sadness hit me. Whom am I going to talk to? I spoke to Ellie more often than any other friend on this planet. All our history is gone except for the beautiful memories we shared. I get home at 2 A.M., exhausted, but I can’t fall asleep until I get the photo album of our trip to Canada in 2011. I slowly scroll through the pages with tears rolling down my cheeks. Selfishly, I’m sad because I’m going to miss her so much, but I know that she is in a better place and probably already decorating and organizing parties in heaven. I think about one of the last things we giggled about.
“Yogi, thank you for holding my hand and never letting go. I’ll be waiting for you in heaven,” she said.
“Well, you better prepare a beautiful white runway when I get there,” I said.
“I will, with butterflies and white lilies,” she replied.
We made a pact that when I see a special butterfly or dolphin, I will know it’s her presence around me. Ellie is cremated, and we plan to wait six weeks to do a memorial at our friend Ursula’s house in Santa Barbara because Gracie just started school in Paris. I am heartbroken and I feel empty inside, but I pick up the pieces and try to get on with life just the way Ellie would want me to. Anwar and Gigi are both working in Berlin. At least they’re together, and I’m happy that my mom, Leo, Liseth, and the kids are traveling there from Holland to see Gigi’s Tommy Hilfiger collection and Anwar’s Hugo Boss show. I’m glad they have family support during this difficult time, when you just want to stay home on the couch but life forces you to go on.
Months earlier, I promised to accompany Bella on September 5 to London, where she will receive GQ’s Hugo Boss Model of the Year award. It’s her first commitment after her summer break, which she spent mostly in treatment with daily IVs that actually made her feel worse. Bella is battling severe bouts of anxiety, insomnia, pain, night sweats, migraines, and debilitating exhaustion. It’s heartbreaking to see my child battle and suffer from symptoms I know so well. We make our way to the airport but it’s one of those mommy moments where you lead by example and do what you say you’re going to do. I can’t let my baby go to London
by herself or cancel this extraordinary acknowledgment. I’m trying to pull up the bootstraps while mourning the death of my best friend.
We arrive at our London hotel late that night. I try to nurture and pamper Bella as much as I can with all the tools in my box. Unfortunately, very little of what I learned these past five years can truly ease her pain. I lie beside her and watch her finally fall asleep after I scratch her back and massage a mixture of my essential oils on the excruciating pain along her spine. I often talk to God. Why is there no cure for this horrific disease? How much longer is this going to take? I promise I will dedicate my life to service—just please cure my children and all the children in the world who are suffering just like them. Please, please, please!
It’s hard for anyone to understand what it takes for Bella to get out of bed and get ready to step on the red carpet tonight. Once here, all I can do is gently touch her back and energetically give her strength since I can feel the anxiety she’s battling. It’s anxiety not about the fifty photographers who are calling out her name but about the angry Lyme bugs that we hit hard this past month in treatment. It’s a long and stressful night, but she makes it to the stage. Bella’s acceptance speech is short and sweet and thanks the most important people in her life. My heart breaks and tears roll down my cheeks as I watch her receive the GQ award, mainly because my little warrior maneuvers through a very stressful day of commitments while battling a disease and pain that nobody knows anything about.
The next day, I see the stunning photos of her in the press, and it’s another one of those aha moments. How could anyone possibly understand the depth of this disease by looking at pictures like this? Or the pain that strikes her tiny frame almost every day of her life? Regardless, we understand the cycles and have learned to accept and live with it the best that we can for now. I remind Bella twice a day to stay on her daily protocol of pills and tinctures as she travels around the world and tries to keep all the balls in the air. She’s very brave, and I admire how resilient she is. Although I enjoy my time on the road so I can nurture her, seeing my kids’ struggles with the invisible disabilities of this chronic disease is heart-wrenching, and every morning I wake up thinking about what my next move will be. It’s been such a humbling experience to learn that people don’t understand what they can’t see. “How can you feel bad when you look so good?” is a comment that Lyme patients or anyone battling an invisible disease probably hears every day.
Bella is flying to Paris to shoot her Dior campaign. I’m sad to leave her behind feeling the way that she does, but I promised Gigi that I would sit front row to see her TommyXGigi collection at Fashion Week in New York. I’ve missed so many special moments, and I can’t tell you how much I enjoy finally being able to attend them. I’m tired, but I carefully plan and use my spoons. Woo hoo! I am still alive! And it’s worth it because the Tommy show is amazing. I watch all the beautiful models walk down the runway at Pier 16 in Lower Manhattan, which has been totally transformed into a carnival for this show. Although I’ve dreamed of this moment for the past four years, I never imagined it to be this big. #ProudMommy doesn’t do justice to the pride I feel. Only three years earlier, I dropped off Gigi in the Big Apple and she has accomplished so much in her life while I was home in bed. A year ago, I never could have done everything that I did this week. Even though I don’t have the energy to go out much, I am able to see Bella walk for Donna Karan and both my girls for Marc Jacobs, which is more than enough. I feel blessed and grateful for the opportunity to experience these moments with all three of my kids. I can only take life one day at a time, and every day that I’m able to be out is a victory in my book.
This is my new normal, and I’m happy and satisfied with just that for most of the time. Even though I know all the rules and regulations of running this ship, it’s still hard to control my ever-testing spirit, which pushes the limits that my body can’t keep up with yet. When I feel just a little bit better, I want to make up for all the time I’ve lost, but unfortunately that’s not very productive in the big picture. I move Bella and my goddaughter Olivia into their new apartment this week as well. Thankfully, it is only one floor up in the same building. With a couple of great helping hands, I’m able to pull it off, but nevertheless I push myself to my limit. I swear I will never do that again, because when I get back home to L.A., I pay the price for being reckless with my spoons and spend the next ten days in bed. Being out in the world is always a good measurement of where I am in my journey.
September 14, 2016
Mommy’s job is never done.
#NYC #Moving #smallspacesolutions
I really need to focus on writing this book with Michele. My good days come inconsistently, so progress is slow. Writing is hard to do with Lyme brain, especially for someone like me. I take this whole experience very seriously, and I want my book to be the perfect soup with all the authentic ingredients, but there are so many layers to this story.
It’s Paris Fashion Week, and Gigi, Bella, and Anwar are all walking for different designers. I would love to be there to watch them, but I physically can’t. I need to stay on my protocol and do my treatments. I can see the light at the end of the tunnel but I can’t quite touch it. There are days when I have four or five good hours when I think, “Okay, I got this,” but then I crash and burn for a week at a time. Will I ever be the same again? Can I keep elevating my new normal? Is this what remission feels like?
Anwar has matured beyond his years and has taken a very strong position in our family. He is in Paris working and watching over his sisters right now. Homeschooling has been a great choice for his last year of high school, and it’s given him more freedom to grow in other areas of his life. I’m starting to dream about moving to New York, too. My girls need me there, and I no longer have any connection to L.A. or the life I once lived here. I’m still very isolated and only see a very small group of people in my life who have stood by me through my journey. I have no desire to go out and socialize in a community that I see so clearly for what it is. I am totally satisfied in my perfectly spun cocoon, where I feel safe and am busy working on a future and all the amazing things that are important to me and my family. Being the anchor takes all my time and energy, but it’s perfect for now and there is nothing I would rather do. Friends ask if I’m ready to meet their single friends, but I keep saying no because I want to wait until I move to New York. I don’t want to fall in love in L.A. This is not where and how I want to grow old. Energetically, it doesn’t resonate with me. Life somehow brought me back to L.A. for good reasons, but I know that journey has ended, and I’m looking forward to making my way out east in 2017. I’m so ready to experience four seasons and to live among all kinds of inspiring and creative folks in a melting pot of different cultures and the dynamic energy of normal people who seem to have normal jobs and live normal lives.
From New York, I can fly to Holland more easily and visit my family more often, which is important to me. I miss my mom and she is getting older. She has been struggling since she was diagnosed with uterine cancer two summers ago. She can’t get out of bed for weeks at a time, yet every workup with her local doctor says that everything looks normal. This infuriates me. So a few weeks ago I e-mailed Dr. De Meirleir and asked him to please see my mom ASAP. After all that I have been through, I know that doctors are human. They do make mistakes, and, as a result, people can go undiagnosed with all kinds of diseases for years. I think my mom is one of these people.
Six weeks ago, my brother drove her to Belgium for a complete workup with Dr. De Meirleir similar to what I did four years ago. They call me with the shocking news: at the age of seventy-six, my mother is diagnosed with Borrellia, Bartonella, and Chlamydia pneumoniae, which mirrors some of my own diagnoses. Surprisingly, Dr. De Meirleir thinks she’s had Lyme for more than thirty years. This news is devastating. A thousand questions go through my mind. How am I going to fix her? What if she’s had it for fifty years and gave it to me by birth? What if I gave it to MY chi
ldren? Is that possible? And what are the chances that me, my best friend, sister-in-law, daughter, son, goddaughter, and now my mother have Lyme? How am I going to help her get well when I’m so far away? I already promised God that I would stay on this path. Is he trying to make sure that I don’t just get on with my life, forget about this, and pretend this didn’t happen? I go to sleep that night feeling shaken to the core but wake up in the morning with a lot of clarity. I must take what I’ve learned and apply it. I need to act, not react with my emotions. I call my mom.
“Before we start Dr. De Meirleir’s tremendous antibiotic protocol, let’s first try a holistic approach,” I say.
I need everybody around me to get healthy and live the healthy lives we deserve. The better I start to feel, the more I want to help others. My heart is full of compassion and empathy for those suffering and it feels good to bring clarity to them and help them find healing. I think the biggest problem we face today is that there are a lot of underlying causes that lead to disease, which has motivated me to shine light on uncovering this mystery. The amount of e-mail I get from fans from all over the world is astonishing. I read as much of them as I can because it motivates me, but it’s impossible to answer every one. Still, I try to respond to those whom I feel a connection to, which are hopefully the ones who need it the most. This week I get the following e-mail from a woman named Julia:
From: Julia
Date: September 12, 2016 at 3:54:38 PM EDT
To: Yolanda Hadid
Subject: Looking for some guidance/help please xo
Good afternoon Yolanda,
I’ve been a huge fan and following you for some time now. I’m reaching out in hopes of getting some direction or help in any way possible for my 40 year old husband and father to our two young boys ages 4½ and almost 2 years old. We have had a year from hell to say the least. We are a normal, fun, go-getting couple and family who live on Long Island, New York.
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