Warning! Do not read today’s blog if you don’t want to hear about my boring ALS or if you don’t want to see really graphic photos. You’ve been warned.
Mind over matter is a concept that I totally believe in but I have to work on it on a daily basis.
The day I was diagnosed with ALS I remember thinking, “Uh, oh, this is not going to be good.” I was preemptively feeling sorry for anyone who was going to have to come in contact with me while battling this disease… Doctors, nurses, caregivers, my husband, my daughter. I knew that my fear of everything was going to spill out everywhere… And it did, and it does but I am learning how to keep it in check. I thought today that maybe I could pass along a little wisdom… The little wisdom of how to have your mind stay in control.
This is me at my 4 hour vitamin intravenous drip session.
I worry about everything, always have. I worry about things before they happen. I used to worry every day that Gracie was going to be kidnapped when she walked to school even though she was in the 10th grade and even though her school was literally next door to our apartment in New York. I could see her classroom from my bathroom and I was still worried. She would text me from school and say, “Stop watching me!” Aside from all of my general worries about everything, my biggest concern about ALS always has been, “Is this going to hurt?” I have probably asked that 5 billion times in the past five years and the answer has usually been “yes.”
This is me at my first feeding tube surgery.
This is the feeding tube #1.
It all started the second day at the neurologist’s office near Gramercy Park in New York. There was no mention on anyone’s lips of the diagnosis of ALS yet, but my sweet Russian neurologist suggested I do an EMG test the following day. I had enough sense and enough experience of dealing with my psychological fear of everything to save myself a day of worry and not Google what an EMG was. Ignorance is bliss. The next day I arrive to the neurologist office rather calmly with my sister and my mother, was escorted into a special room and asked to lie down on a bed. No problem, I guess I can do that. A second specialist entered the room and took a big drop cloth off of a horrid looking machine that they were apparently trying to hide. My intuition begged me to ask, “Is this going to hurt?” The doctor’s answer was simply, “Yes.”
Weekly blood draw.
Now, this situation can go two ways: You can either man up and take this like a lady or you can fall apart. Before you make your decision, let me tell you what EMG involves. “The EMG measures nerve impulses within the muscles. Tiny electrodes are placed in the muscles of the arms and legs and the electrical responses are observed using an instrument that displays movement of an electrical current. As muscles contract, they emit a weak electrical current that can be detected, amplified, and tracked, providing information about how well the muscles are working. These responses are abnormal in cases of ALS.”
Basically, an EMG electrocutes you.
This was my first introduction to pain and fear. Real pain and real fear. I kind of levitated out of my body. The pain was the worst I have ever felt in my 45 years of life including the day that my gigantic 9 pound baby Gracie came out of my delicate lady parts. I remember looking at my sister during the EMG test and I could see sheer terror in her eyes...She couldn’t even disguise her fear for my sake. I had not established any tools in my repertoire at this point of how to deal with this kind of pain and fear so… I just started screaming. “Stop doing that! Stop doing that! You are killing me! I obviously don’t have any nerve damage because I can feel every single thing that you are doing!” How wrong I was… I failed the nerve conduction test on every level… Mentally and physically. I couldn’t control my fear and I couldn’t control the outcome of my test. I had ALS and this was just the first day of what was to come.
The next five years have been filled with surgeries, blood draws, poking and prodding, four-hour intravenous vitamin infusions, lungs collapsing, fainting, choking, nausea, MRIs, x-rays, night sweats, fasciculations, paralysis, BiPAP machine, cough assist machines, feeding tubes, electrical pacing machines, and on and on and on. Never did I ever think that this would happen to me. I knew that I was not equipped to deal with this kind of physical pain and mental fear. To put it politely: I am a big fucking baby. Over the next five years I had to learn how to get myself under control and learn how to mentally deal with my fear.
This is me after my diaphragm pacer surgery. My lungs collapsed 2 hours earlier.
This is my bruised stomach after the diaphragm pacer surgery. I was in pain for 8 weeks with something called referred pain. I took oxycodone until I almost killed myself.
This is the diaphragm pacer. It never worked yet I still have it.
Tuesday I had a terrible episode with my feeding tube. It also happened to be David’s birthday. Happy Birthday David, welcome to another glorious day with your wife. Within 30 seconds I was knee-deep in a gigantic panic attack. Heart pounding, nausea, jaw clenching, sweating while simultaneously freezing, shaking, teeth clattering, tears and then I quite nearly bit my tongue off… All of this because my stomach hurt and because I Was Afraid.
Two thirds of the way into my panic attack I said to myself, “Ellie. Get a hold of yourself. Mind over matter. Distraction. Talk to God. Go to your happy place. Envision yourself at the beach, healthy, doing yoga while sipping a gin and tonic with extra limes. Use the tools that you have learned, idiot.”
So I did. And I got through it. I thought I would share my techniques with you in case you ever need them. On a side note, while I was going through this panic attack complete with severe nausea my husband walked into the room stuffing his face with foie gras on toast. Foie gras on toast is quite literally the last thing a girl wants to see while nauseous. So I had to have my caregiver murder him for eating foie gras in front of me while nauseous and for eating foie gras in general.
Your mind is a very powerful tool that can be used for good or evil. Your choice. A weapon of peace or destruction. Your choice. Your thoughts can change a scene. For example, whenever I have my blood drawn they don’t just take one vial, they take like 400 vials. I have to mentally prepare myself. Here is my trick… I do about three minutes of deep breathing and meditating myself into a very peaceful place and then I have my iPad at the ready with the latest Architectural Digest loaded up and ready to view. I swear to God I even close my eye that is on the side of where my arm is where the blood is being drawn so I will not see it. I look at my Architectural Digest with my other eye. My husband swipes through the pages and says to me, “Look, isn’t that pretty. Look at that garden with those beautiful flowers. I know you like that table but do you like the bed?” He engages me in conversation so that I totally forget the vampire that is sucking my blood on the other side of my body. Guess what? This works!
This is feeding tube #2.
This is when the doctor ripped my feeding tube out and I had a hole in my stomach. Cute.
Whenever I have to go into surgery, I use my daughter. I always have her go with me right up until the point where she is not allowed to pass. She holds my hand and I look into her blue eyes and all I think of is what a wonderful life she has given me and that I need to be strong for her. For some reason it’s easy to be strong for her. Guess what? This works!
Gracie loves to have her photograph taken at 3o'clock in the morning at the hospital. This is when I had gall stones on top of my ALS. I look happy because I am on Vicodin.
My next trick is to trust God. Once I had an emergency where I thought I was dying so my husband rushed me to Cedars-Sinai Hospital and because I have ALS, everything is at a heightened level. 400 doctors and nurses surrounded me shoving needles into my arteries, thermometers up my tushy, heart monitors on my chest trying to pinpoint the exact problem. I remember thinking to myself, “Okay God, I need you. Where are you? You need to show up.” I honestly didn’t feel like he showed up that day so I ignored him for the next two years. We are on better terms now and I feel that he is always here but he is one of those types of guys who makes you learn your lessons on your own. He’s not going to just give you the answers, you have to work for them, learn them and earn them and only then will the guy show up. This takes a lot of work, soul-searching and honesty with yourself. But guess what? This works!
Next up: Visualization. I am a big believer in this. Believe me or not but you can actually trick your mind into thinking you are somewhere else. Nope, you are not in a doctor’s office learning that you have a terminal illness. Instead, you are in the South of France wandering through a fleamarket looking for that perfect landscape painting for only 8 euros. You are in your garden watering your award-winning tomatoes getting ready to prepare them for your famous salad caprese. You are shopping for your daughter’s wedding dress beaming with pride that she did not choose one with mountains of tulle. You are next to your handsome husband watching your fifth consecutive hour of House of Cards while eating gummy bears in bed. Guess what? This works!
It’s very important to have a theme song when going through life’s trials and tribulations. You need to choose a song that makes you feel empowered. My song is Queen’s Under Pressure. Click HERE to listen. My other theme song to keep me mellow is Israel “IZ” Kamakawiwo’ole, Somewhere over the Rainbow. Click HERE to listen.
This is me with my headphone singing my theme song just after the doctor ripped out my feeding tube with his bare hands. I'm singing because I am on the verge of blacking out.
Now, when all of these tricks fail and things just get to be too much, there is an alternative. When I actually feel like I cannot take it anymore and my mind is playing tricks on me, I have been known to resort to a crazy pill here and there. I only started taking these pills last year even though I should’ve been taking them probably my entire life. Not every day, just when you cannot get control of the situation. In my case, this happens every couple of months. With ALS, my breathing is severely compromised and sometimes I feel like I am suffocating which sends me into a spiral of fear so intense that it is quite dangerous for me and everyone around me. I am a complete nut job. So I take half a crazy pill and have my husband turn on my favorite TV channel: Zen TV. I sit there quietly and watch waterfalls and bunnies hopping through a field until I can pull myself together. Guess what? This works!
A little kinesiology goes along way.
The last little bit of advice I have when fear starts to win is to just give up. I really mean that… Just give up. Just reside to the fact that you may die in the next 12 minutes and for some reason a sense of calm prevails. This totally worked for me the other night when I was knee-deep into my feeding tube disaster sitting on the potty with my caregiver holding a bowl under my face in case I threw up while I was shaking, crying and biting my tongue until it bled. I just said to myself, “Fuck it.” Guess what? This works also.
I have asked some of my friends what their tricks are to keeping one’s mind stronger than the situation. One of my friends chops vegetables, one of my friends walks her dogs, one of my friends watches cute cats on YouTube and most of my friends take 14 too many crazy pills. What do you guys do? What are your tricks? What’s your advice? How do you get through the tough times? Leave your answers in the comments. Maybe we can all help ourselves by helping each other.
This is me on oxycodone in Beverly Hills at lunch with David trying to be a happy wife. My pain level is a 9.5 this day.
*Something you don’t know about me? My caregiver just informed me this morning that he previously worked at a mental institute. I told him, “Good. That means you are qualified to work at our house.”