And then, I got sick.
I am so scared to write this. I assume there is someone else out there either going through something similar- or something worse. My goal is to not offend anyone, downplay a situation by bringing levity to my own experience or possibly highlight or dig into a painful circumstance for someone else. However, I feel that this is a safe platform and you are my safe audience, and I am ready to share... in abundance so much more than you want to hear. Let's name this one A Woman Rambles, by Carly A.
Do you ladies remember Jessica Coffee asking everyone to consider donating blood after the disaster in Houston? I went. I was either in for the Oreo cookies, for the reward of having helped at a time we all felt so helpless or.... It was the universe. I don't know. But something got me there that day.
I showed up and met with a few of the other moms- Becky and Jocelyn...Jessica. We filled out forms and sat down. One of the first steps when donating blood is a quick finger prick, outside of answering questions around international travel, cold sores and flu. I went in for my finger prick and signed some papers. I asked, "What's next?"
Call your doctor. We cannot take your blood today. Do you have your period? Have you been sick? Concern washed over me but in my usual clown disguise I brushed it off. I am an active mom who eats well and feels great. What is wrong? "Ma'am, your iron levels are incredibly low and taking blood from you today would not serve you nor the person receiving your (rotten no good 0-) blood."
I came out of the room somewhat embarrassed and ashamed, and of course, worried. I shared it with the group- at the time feeling friendly but not very 'personal' with any of them. That changed quickly. Within a week I was having tubes of blood drawn for all sorts of issues. I also came down with strep. Then Halloween I had a cold and a fever. I felt exhausted. My PCP asked that I get checked for... INTERNAL BLEEDING by ways of scopes. FUN STUFF ladies- Fun Stuff. I was referred to specialists ranging from Gastro's to Hematologists. My phone would not stop ringing.
I called Ali. Ali from our league. I was FREAKING OUT and knew she also suffered from low iron (sorry Ali... now I am talking about you, too. I didn't say your last name so no one knows...right?). She calmed me. Why was I freaking out? Because the doctor mentioned things like, "Internal bleed, tumor, cancer, bowel disease... just want to rule out a few things." The testing was scheduled. November 10th was THE DAY. I was going to find out what my fate was. I was going to go in a healthy-ish mom and come out potentially...dying.
It was the dying part that got me. I couldn't sleep. I couldn't be awake. I couldn't talk about IT, but I felt like horse &%^$ - and people knew. I was short with friends, I was angry. My temper flared. I cried, a lot. How could this be?
Blood test #3. Numbers declining. SCOPES coming up fast and furious. Night before the scopes I FREAK out. "I don't like that doctor. He didn't explain anything. He doesn't care about me. He just wants to go IN. I don't want to work with him! I think the problem is somewhere else." My husband sees my now visible anguish and makes the call. Cancelled. I find a new doctor. Now scheduled for the 22nd. Doctor gets sick. Now rescheduled for the 30th. Blood tests show no improvement- though I am drinking disgusting green juices, taking very strong iron pills and trying everything I can. OBVIOUSLY, I am DYING. I have a disease and it is going to make my children so sad. My kids! How am I going to tell them? I know... I will just take them to church. It is the best place to tell them. Friends often asking for updates. I didn't have any.
Oh, my parents! I couldn't tell them yet. In fact, I will keep this a secret. No one will know. I will go "away"- get cured and come back. Perfect plan. Let me find an au-pair. I will survive THIS, and no one will ever know. These are the thoughts inside a desperate mother's head. I had watched my funeral playing out moments before I fell asleep EVERY NIGHT. And I woke to swollen eyes from crying about it every morning...for months.
Nothing- NOTHING made me feel better. Friends would call and try to cheer me up and talk sense into me. I didn't want to hear it- I couldn't digest what they were saying. Nothing made sense. My phone wouldn't stop ringing. "Pay your deductible. Schedule your prep. Preop is at 6am" .... I don't know about you, but I have a long list of friends who have been affected by illness. Whether it be their parents or children, and in some cases their self or spouse. My heart. I felt so much guilt. I suddenly started going through the many missed opportunities of my life, and I shut down. I also realized I AM A BAD FRIEND! I am the friend that throws sand over a problem... I glaze over things and bust out champagne. I ignore the problem. Always. It is actually who I am. I will never bring up your problem. I will ignore it with you and get you drunk and dance on furniture.... And you will hate me in the morning. You might even hate me that night.
"You're going to be okay- I Know it.... I will shave my head, too." "You are strong, Car. Don't be scared." Who's going to take care of my kids? Will my parents be upset if I leave them with just Aleks and get a helper? How would he continue to travel with the kids? Who is going to go to their Christmas shows? Who will take them to plays? Who will put Elizabeth's veil on... dance with Brandon on his wedding day? What if Aleks gets sick! How will middle child Dylan make it without me? He is my human Velcro! I am crying writing this up because it DESTROYED ME.... And realizing other mothers go through it every day. How can this be real life?
I am not strong. I was scared. And nothing was making me feel better. Because of the circumstances, the guilt piled on. Cancelling meetings and lunches, chats with my business team or presentations. No-showing on friends and parties. Then I got pneumonia. I had people saying things like, "you have been sick for SOOOO long." Yes. I know. "Have you tried to go gluten free? I have been healthy since I gave up gluten." "Come out for a yoga class! It will help!" "When I gave up eating animal products, my health improved. You probably don't eat right." "You are burning the candle at both ends." Can you think of worse things to say to someone who is sick? Everyone meant well- but there was no winning with a woman facing her imminent death!
What I realized was that I talk the talk, but do not walk the walk. I didn't turn to friends right away. In fact, I wanted to hide. I did not call my parents and ask for support. They were, instead, surprised when they had to take an emergency flight out to Texas the day after my procedure. My dad sobbed begging us to tell him what had happened... but I was just not recovering well- nothing was found. You might remember seeing my mom and dad at our children's Christmas Party in December. That was that trip. I didn't trust the doctors. I didn't trust my friends. I didn't even trust my faith. I was crippled by the "moms are strong" image I felt I needed to live up to. The same image that keeps so many of us quiet about so many things. It was the loneliest time of my life, but I fear I am not alone. We are so quiet, we keep things for so long.
How often are you keeping something painful and life changing to yourself because you fear that others won't understand? Kept silent by the fear that you won't seem strong? Silent because you are afraid to be judged or talked about? Worse yet... they will feel badly for you. Everyone will know. How many moms are struggling alone? I never thought a simple finger prick and asking, "what's next" would open this world of tests and tubes and scopes and scans. And that was just what it led to physically. Emotionally, I underwent a transformation taking toll of what mattered, what didn't and how I was going to live the last years or months of my life.
I wonder if that is how we should be living... I hugged my children more in the months of December and January than my parents hugged me my entire life. And while I still don't know what the heck is wrong I know one thing for sure. Death is not something any of us will escape. Living like we are dying is scary. Mothers and fathers are living like this around us every day. We are NOT alone and while I don't want to make this a support group- this is a support group. Whether we are supporting you through potty training or the kids going away to camp for the first time, whether it is a strange test result or a bad test result, whether it is dyslexia or Crohn's - WE ARE A SUPPORT GROUP and I hope if nothing else that this year we foster a community that is more open and honest, more vulnerable and less afraid. Because we need less judgement and less fear. Because it DOES take a village. And because I wouldn't have made it through these last few months without a little help from my friends.
To everyone who dropped things off, called or asked questions...or dealt with my being a raging lunatic. Thank you. I will never get all the thank you cards out- but I promise it is on the to-do list. I am grateful for you and hope one day, I can give it back.
Here's to Jessica Coffee and the finger prick... to finding out what the heck is wrong with me and in the meantime, seeing all that is RIGHT with me. Thank you, friends!