Almost a decade before I knew I was sick myself, I found myself in the world of cancer. I’m a believer in divine timing and it was no accident that a beautiful woman and fellow member of a Los Angeles online parenting group I was part of reached out to me for help with her skin. She had a two year old and sadly when her daughter was only about 11 months old she was diagnosed with AML — an aggressive type of Leukemia. We became fast friends and she taught me how to talk to people with cancer. She hated pity and she was determined to live as fully as possible until she couldn’t. I was blown away by her spirit and she had a profound effect on my life that continues as I write this. Because of her I began volunteering for an organization called Look Good Feel Better, facilitating classes for women living with cancer to teach them how to take care of their skin and use cosmetics to cover up the ravage of their treatments. Sadly my friend lived just long enough to see her daughter turn 3 but I continued my work in her honor as she made sure I knew how many women needed me to help them feel beautiful again. Just two months after she passed I got certified in Oncology Esthetics and went on to give a speech about my work in Sao Paulo, Brazil and began teaching and certifying other estheticians to do what I do. Outside of doing makeup and skin care treatments my girlfriend taught me to be present, to not shy away when someone is sick, to learn how to live in my own discomfort or fear.
Each year when I’d have my mammogram I’d wonder if this was going to be the year that I got cancer. I was so drawn to the work I did, even getting a part time job at the Disney Family Cancer Center one day a week, that I just assumed this was why G-d wanted me in this world — to prepare me for when it was my time. I wasn’t scared — I had learned so much about cancer, had personally gotten to know some of the top oncologists in Los Angeles and felt empowered.
But as you know, it wasn’t cancer that completely threw my life into a tizzy — it was Lyme Disease — something I’d barely even heard of. A disease that like most doctors I thought was something you only got on the east coast from being bit by a tick. So when I found out that not only did I have Lyme Disease, but I realllllly had Lyme Disease in that it began taking over my organs, I went through all those stages of grief we read about. Denial and anger were the big ones for me — but for the first year there was a lot of denial and fear.
Thank goodness a long time friend who I’d only been in touch with via social media reached out and revealed her own diagnosis with Lyme the year before. She connected me with an incredible group of Lymies on Facebook called L. A. Lyme. I spent the first several weeks scouring members’ posts and files and documents in the group to learn everything I could about my disease. I remember a woman in Santa Barbara posting about her desperate search for a local Lyme Literate MD — there was no one. Two weeks later someone posted in the group that this same woman had taken her own life. I knew then that this disease was more evil than cancer — and I mean no disrespect to any of my friends and followers who have dealt with that sucky disease but in the world of cancer no one rolls their eyes at you — there are many many doctors that know how to treat it and survival rates are high. There’s even a name for these doctors — oncologists. There’s no Lymeologists. Most doctors don’t even believe chronic or late stage Lyme exists. Naively, like I used to be, they think you get bit by a tick, most likely from hiking somewhere in the woods back east, you take antibiotics for a couple weeks and you’re fine — no biggie.
Well guess what? It’s a BIG DEAL. It’s been over two years since I learned I have this horrible disease and I’m just now feeling well enough to start processing what happened to me while at the same time praying and praying it doesn’t take over my body again because quite frankly I’m exhausted. In a future post I’ll list many of the things I subjected my body to in the name of ridding myself of Lyme and you won’t believe it.
But for now I want to talk about communty. My beautiful girlfriend who died from cancer taught me how to talk to people living with a deadly disease. But most people have never had this training. There were very few people in my life who knew how to “be” with me. I was always the strong one, there for everyone else in their times of need. When someone had been diagnosed with cancer I’d drive them to appointments, be part of a meal train, visit, etc.
But when I started letting people know I’d been diagnosed with Lyme — no one knew what to do with or for me. And codependent that I am, I didn’t know how to ask for help. The crazy part that to this day I still don’t understand is that I actually lost friends that I thought would be in my life forever. I rarely heard from them. If I was invited out to dinner I couldn’t go because I was so exhausted that as soon as I got home from work I had to get into bed. So the invites stopped coming. I can probably count on one hand the number of friends who brought me dinner or lunch — you know who you are if you’re reading this. One person texted one day and offered to bring me dinner one night and I went outside my comfort zone and texted her back right away “that would be great!” Never heard from her again.
There was never a meal train for me. There were hardly any visits from friends. A year ago my doctor gave me the form to get handicap license plates because I had a blood pressure/heart condition that caused me to get dizzy and faint and I needed to be able to park close to entrances so if I passed out someone would see me and get help. I’ll never forget that day. I was at AAA (the Auto Club) to turn in the form and the manager handed me my new license plates. I asked him if I should drop off my old plates once my husband changed them for me at home. He said I’d need to turn in the old plates right now. I asked him if there was anyone there to help me change them and he informed me they were too busy and handed me a screwdriver. It was 90 degrees in Encino that day and there I was — the disabled person — on my knees in the parking lot trying to change my own license plates. The irony of it all jolted me and it may have been the first time I really cried about my illness. A lovely man took pity on me and changed the plates for me that day and I sucked it up and took the old plates back inside and slammed them on the counter and walked out. I literally sobbed the entire drive home (not safe I know) and seriously contemplated shaving my head so I’d be taken serious.
Lymies don’t look sick. I forced myself to put on a little makeup every day — yes I learned this by teaching cancer patients that if you look good — maybe you’ll feel a little bit better. I went to work almost every day. My social life changed dramatically. Because most of my friends had no clue what to do with me, how to talk to me, stopped inviting me places because they probably thought I was a flake because I always said I was too tired or had a migraine or was in too much pain, my nights became about chatting with other Lymies on social media — mostly in my group L.A. Lyme.
They got it — they got me. One new friend in the group, incredibly sick herself, literally drove to my house one day and dropped off a care package of epson salts and Alka Selter Gold (something we take when we herx from bacteria dying off) and chicken soup. She was too sick herself to come inside or even knock — she texted me that she’d left something at my gate. I was blown away. Outside of my immediate family the only people that were really there for me were other sick people.
I attended a couple gatherings of friends I’d made in the group and I cannot begin to tell you how good it felt to spend a couple hours with people who were like me. We laughed and cried, compared treatments, what’s working, what’s not. I got to show off my new portacath and ask questions about how much heparin I should be putting in everday. We were all sick but we were and are there for each other.
Since then I’ve hosted a few potlucks at my home with the same group. Believe me when I tell you that the friends I’ve made in the Lyme Community are some of the most generous, loving and selfless people I’ve ever met in my life. We don’t get meal trains, people don’t offer to drive our kids to school, no one drives us to our MRI’s or colonic appointments or sits with us when we’re waiting hours to be seen by one of the very few Lyme Literate MD’s that exist in our city.
You wouldn’t know we were sick by looking at us in the world because we suck it up and do what we need to do — mostly on our own — because people don’t know what to say to us because they just don’t get it. Cancer is familiar. We all know about chemo and radiation — we’ve seen people’s hair fall out — lose weight. I lost a ton of weight — I was even 82 pounds at one point — some people actually thought I had an eating disorder.
I’m crying just writing this because I don’t think any of the friends I’d had prior to getting sick knew how bad I was. But the men and women in my Lyme group did. We’d text, message on Facebook, laugh hysterically in our posts. One of the smartest and most beautiful women I’ve had the pleasure of becoming close friends with created the L. A. Lyme group and I’ll never forget the night she posted about Lyme The Musical. We all chimed in with hilarious scenes that needed to be in the musical we’d create. It was hysterical but you’d have to be a Lymie to understand. But I laughed so hard that night reading everyone’s input.
And that’s how we survive — that’s how I’ve survived the last couple years — with my community. My new friends who I know without a doubt would bring me a meal or at the very least would call Postmates or Grubhub and have one delivered. I’ve been saying for a while now that the #silverlining of Lyme is the friends I’ve made, the community I’m honored to be a part of.
I’ve made it my mission to educate those who don’t have Lyme about what it’s like. I hope that if they have another friend that’s diagnosed that they’ll show up more and perhaps pay a visit or offer to take them to an appointment, or even just crawl into bed with them and hold them and cry with them. Our disease is invisible for the most part — but we deserve to be believed and to be comforted. We’re here — we need you — we need community.