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.
A toute!
*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.”
This comment has been removed by the author.
ReplyDeleteYOU areNOT ALONE................
ReplyDeleteI have LOTS to say here but NO words are formulating!
YOU are doing a TERRIFIC JOB.I wish I could make those PANIC ATTACKS just fly out those FRENCH windows for YOU!
One of your READERS will have a solution................
XOXOX
Dear Ellie, THANK YOU for each word. I really needed them. This mantra helps me be calm in difficult situations. Hugs from Brazil.
ReplyDeletehttps://www.youtube.com/watch?v=_xmbEbBvO_Y
Okay - after reading this, I realize I possibly haven't really had that many reasons to complain. Yes; I've had some trials to endure that friends have said would have put them in the nut house and I have got thru them okay, but my health has been fine and my children have been great and healthy also and I come from a great family and have friends and my faith and have everything I need and a lovely home, etc., so the impt. things are there. But bc of some tragedies in my life, I became a worrier, and like you, I worry about Everything! Yes, that my sons would be kidnapped, that I would be accosted in a mall parking lot, that a tornado in Missouri would kill us all! My family used to say that I scared my sons more than the tornado sirend did!! And I also hate pain! Still kind of freak when I get a shot if you can imagine. I hate the unknown! So I cannot even imagine how you handle what you go through! And it's always been hard for me to get my mind to a "happy place" while enduring something such as you go through!? I was raised a Christian in a Protestant church and do rely on my faith a lot and other than that, I turn to the medicinals!:) Prescribed of course! Know it's a cliché, but you're obviously slightly much stronger than you think, or else you're getting stronger mentally the longer this goes on! I'm a baby and would alternate bt promising to be stoic and then crying and bitching at whomever would stand around long enough to listen. When I say faith, I'm reminded of some movie Burt Reynolds was in when he was drowning, and he promised God he would give everything he had to charity or the church if he could make it to shore and he started swimming, and the closer he got to shore, he kept saying, "well, I'll give 75% of everything I have", and then closer he said, "I'll give 50%", and then as he crawled up on the sand, he said something like "I'll think this over and see what I can do". That reminds me of me sometimes when I get in a pinch. I make these big promises to God when the sirens are going off that I can't possibly keep when the weather clears!! I need to change that! Wish I had some perfect solutions for you, Ellie! I really pray you didn't have to go through all this.
ReplyDeleteWhen things get really bad, when the pain is just too much, when the tears are just too many...I crawl into bed and hold onto my dog, with the covers pulled up over our heads, and just listen to her breathe, and feel her warmth...the healing power of the puppy! Works every time. JD
ReplyDeleteYes! Dogs are full of love and comfort when we need them. They are a gift from God surely.
DeleteSheila in Port Townsend
Oh I also forgot to tell you this one. Feel the feeling. My therapist says to not name the feeling (like fear). Just let it come and feel it. Soon it will pass.
ReplyDeleteyes yes yes to this. Martha Beck has written extensively about this--feelings don't last all that long (90 seconds? can't remember), so if you can just surf the wave, it actually will pass through you much more quickly than if you resist. (What you resist, persists....)
DeleteBut! This ALS stuff is not some average 90-second thing. So there's that.
You know, I've been sitting here in my office all morning with tears running down my face in frustration. Your post was exactly what I needed. Thank you. LOVE your blog. Have some decorum, indeed. - Lilah
ReplyDeleteEllie, I don't comment much, but this is the Mother of All Posts.
ReplyDeleteThe fear . . . I'm going through a huge legal problem right now. We are running out of money. I consult psychics on the regular who say it will all blow over. But the fear. Most of the time, I keep my head together and can be quite stoic. But sometimes the fear of what will happen overtakes me. I can't help feeling that the stress has taken years from my life.
Thank you for posting all the graphic photos and describing what that fear and pain feels like. It shouldn't be hidden away. I am waiting for an appt with our attorney today and cried just a few sentences in because I understand about the fear - though of course your situation is far worse and completely unrelenting.
You are a goddess holding a light on the path. You really are.
I won't say it. It will only get me into trouble.
DeleteSheila in Port Townsend
I second the "fuzz therapy" of a beloved pet. It has made a huge difference in my life. To be able to focus on the warmth, the feeling of closeness, the unconditional love in their eyes makes some pain less.
ReplyDeleteIt has also helped me immensely to be outside, both in good and bad weather. Deep breaths make me commune with my Creator in a way I couldn't inside.
Praying for you, especially for a release from fear.
I manage debilitating panic and anxiety attacks with reruns of Designing Women, magazines. and travelling when I can. I know this is not something that I can do every time, but getting away for a weekend while trying to manage a four-month-long panic attack works. When I cannot get away, it is literally mind over matter. I repeat memorized scripture and tell myself (sometimes at the top of my voice) that there is not a damn thing to be afraid of. Now, I do manage it with a daily pill as it does balance the hormones, but I also know that I cannot rely on medication alone. The best thing you said...that I will have framed in my house...in numerous places is, "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. "
ReplyDeleteCan I get an effing AMEN!!
Love your spirit, Sweet Ellie. Thank you for sharing your day-to-day with me as it helps keep me strong as well.
Amazed at how you get through all this,and with your sense of humor intact!
ReplyDeleteEllie, move into stillness, in whatever way you can, meditation, recorded ocean waves, yoga in your head, and send your prayer warriors an SOS, so we can lift you to a higher place. I love you for the courage you show us each and every day! I want to meet you one day, probably in heaven! Love Karen
ReplyDeleteHang in there! Your ability to see the humor in things is truly remarkable and even more important than your good taste and excellent culinary skills. You have given a lot of people strength that they didn't know they had just by describing your life with ALS. How amazing that this beautiful blog has moved mountains of emotions! We just all wish you didn't have to go through this but are grateful you help us put our problems in perspective. I think you will have good real estate in Heaven! xo
ReplyDeleteOh Ellie I am so sorry this is happening to you. No one should have to go through the hell that you are going through. I wish, I hope, I pray that the doctors hit on something that turns this insidious disease back to its gates of hell. Andi
ReplyDeletehello my beautiful, strong, inspiring, kind, creative, hilarious, generous, artistic, loving, loyal soul, gentle warrior ~ what do I do? I drive in my car to wherever blasting music, sometimes screaming, I listen to a funny monk, Ajahn Brahm, Buddism videos on youtube, hide in my down comforter wrapped like a papoose, close the black out lined window treatments, kick up the A/C so I wear socks in 100 degrees, eat gooey cheesy food, dark chocolate with almonds, cry incessantly, head to nature, stare into nowhere, scream and cry for my mom who has moved on or someone to hear me & hug me or head to yoga to hug myself ~ then another day comes ~ XOXO
ReplyDeleteand there you are beauty, in "the" hat again! Just love this hat! ;-)))) I have deep heartfelt respect for you Ellie, your blog helps me make another day ~
ReplyDeleteEllie, you are amazing. Thank you for sharing your tricks. I am inspired by your bravery, honesty, and the community you create through your blog. I started accepting, just this year, that my brain is broken. The valve on my stress emotions opens too quickly, too frequently, way too much, and then doesn't close. I don't think I do anything genius to manage it, but I have a few tricks that have helped me. When I start loosing it, I tell myself to press pause on anything flooding through my brain that I probably won't be able to process or deal with the way I would like to. I remind myself that I'm probably going to burn the whole village down if I don't. I try to shift focus to something like my privilege of being a parent and use something related to that to think about. Or, I make a list of what I have to do before I can just go to bed and put all my energy towards marking those things off the list. One of my favorites sayings is "Give it to God and go to sleep". (I especially liked your commentary on how getting some help from God works... so true!) I also take a dozen Chinese herb blend pills for calming (Serenagen) daily and homeopathic drops (Cerebromax) when panic, anxiety or stress breaks through my herb wall.
ReplyDeleteI love your blog... you inspire me, make me laugh, make me cry, and curate everything I love. Thank you!!
Your ALS posts are never boring. One of my best friends lost her mother to ALS during college; having declined major interventions, she passed away about 1.5 years after diagnosis while my friend was on a plane back from the other coast. I will never fully grasp the courage it takes to be a caregiver for your dying mother as she was, nor to soldier through a terminal illness for the sake of your daughter as you are doing. Be strong and I will keep you in my thoughts.
ReplyDeleteI have No. Words.
ReplyDeleteLove you x
It's a real bitch, what you are going through. I'm so sorry. Keep hanging in there, girl.
ReplyDeleteSheila in Port Townsend
Sending love from sunny Australia Ellie - you are what we call a real 'trooper'! My sister and I have had some tough times lately. We have a beautiful framed print from Blacklist Studios with the words 'Don't give up the Ship'. This was the dying command of American Naval Office James Lawrence in 1813, against the British. When things get really tough, we remind each other to decide to fight back and to not give up the ship! Sounds a bit silly, but it helps. Hope you feel better soon X
ReplyDelete--from my yoga teacher training self: I begin focusing on "long slow deep exhales" ... another technique is to focus on breathing, counting the first breath as breath #32 and then count backwards all the way to breath #1. Repeat as needed.
ReplyDelete--from my fiction writing self: I begin to tell myself stories. "Once upon a time" still casts a spell.
xxoo to you
First let me say, you look so f*cking fantastic in those photos in Beverly Hills.
ReplyDeleteAs to your question, I am a constant worrier, second guesser and what if I only had, too the point of panic attacks. I never really dealt with anything serious until a couple of years ago when I became my mothers sole caregiver while waiting for a life saving lung transplant. Every single day she got sicker and more dependent, I got more and more scared until I was shaking with fear and then the one thing I did when I didn't think I could make it one more day or I didn't think she would was to just give in to the mental decision of what will happen, will happen. I just literally stopped worrying. It really worked. It got me through some horrible moments, days and weeks.
She was lucky enough to get her lung transplant and recover, actually better than she ever has been and I realized I was much stronger than I had ever given myself credit.
No filter here - I am absolutely heartbroken for you and everything that you have to deal with every single day . You are one of the most talented ,caring , funny to beyond - human beings that I have ever met . For this ALS to rob a gal like you and not a worthless dolt , I will never understand . I wish that I could bear some of your burdens , as I am strong . And praying strong for you Ellie . Please let me know how I me be of the best help to you - anything is possible . Love Always , A
ReplyDeleteWe all devise ways of coping, but you my friend are the master! You are Such an inspiration.
ReplyDeleteDuring severe stress, I take my self back to my teenage years when I'm riding my horse at a nice easy canter. I'm 65, so I have to go pretty far back to get there!
ReplyDeleteName a fruit or a vegetable starting with the letters of the alphabet. .in order..apple . asperigus. Banana Brussels sprouts. Etc..the focus changes.
ReplyDeleteI find the comment about just accepting it and feeling it interesting. .it would be a relief. And by thinking that iand thinking 'ok.its here now what?' It would just disapate?. .The anticipation or worry that it is about to happen is what accelerates it for me. Having that plan already in place could take the energy out of the fear. I wish I could make you happy and healthy. The story is not over. No one knows tomorrow. . I claim that for you!
Ellie, could you be any more amazing. You have the uncanny ability to always posting what I need to read.
ReplyDeleteI have been having my own private pity party, as you know I was fired from my job after 10 years in a very personal and unkind way. I had never had anything "bad" ever happen to me and I keep thinking "why me?" And I guess the answer is why not? After being home all day with my cat watching Orange is the New Black and feeling sorry for myself I called a friend. She is a very strong and wise woman who also reads your blog and in the middle of my pity party she interrupted me to say "did you read Ellie's blog?" She was right, you are so courageous and so inspiring. What do I do? I hide, in my condo in my bed with my cat and my iPad. I applaud you for you r strength your courage and your ability to turn the worst of situations into something funny that gives us a glimpse into what it is like to live with ALS.
I love you my friend, you are my hero
Lourdes
I cry for you..... And then you make me laugh out loud! You are so eloquent, I can picture what you describe. You really have a talent for writing. Now, I had anxiety over, of all things, driving on the interstate or freeway. The only thing that finally helped was this mantra: WHAT WILL BE...WILL BE. I just had to keep saying that over and over in my head. It worked! My situation was nothing like yours, but I needed to get in and drive somewhere, and I felt like I couldn't. I had this awful fear. It seems silly, saying it here. So, huge hug to you. By the way, I guess you didn't get my comment on the potato salad post?
ReplyDeleteI have that anxiety, too. I don't even know what started it as I used to drive the highway all the time. Now I will avoid it at all costs and feel like such a baby.
DeleteI love all of the comments about how all of you "deal." Women are amazing creatures. Thank you all for your well wishes… I feel your hugs. Okay, so next time any of us are in a predicament we breathe, hug our pets, repeat our mantras, recall vegetables of the alphabet, ride horses, weight 90 seconds, and we will not go down with the ship! Thank you everyone for your tried-and-true advice. Ellie
ReplyDeleteExcuse the typo… My voice recognition picked up weight as a weight. And not "wait."
DeleteLate to the party but for me it's music, dogs, and my children. I'm a singer so actually singing the music helps, but just listening is so helpful, too. Dog hugs...yes. Talking to my children about their lives makes me forget about my own problems for a while. Your choice of Over the Rainbow is perfect....such a hopeful lyric and exquisite melody. I wish I could take ALS away from you....it's clear so many others wish they could, too.
ReplyDeleteWho said that this is the Mother of all Posts? I have to agree. And I am still taking it all in. But I was immediately, immediately struck by the similarity of so much of what you are saying with the teachings of the great Pema Chödrön. She is one of the great Tibetan Buddhist teachers of our day and has dealt quite a lot with the issue of fear especially. Here is a talk on "fear and fearlessness" that I think you might find yourself nodding along to in agreement:
ReplyDeletehttps://youtu.be/CVRT-y2wTBY
With all of my heart, with all of my being I wish that you didn't have ALS but you have become a teacher through it and I think that - and I type this through my tears - there is nothing greater that one could aspire to. This in between making us laugh and learn about all of your wonderful interests. You are an amazing woman, Ellie.
Sending you so much Love and Strength and Gratitude,
Heather
yes i do have a trick now to help me going through tough times and it is to think
ReplyDeleteof how courageous you are! that will sure make think twice about complaining about everything from now on!
Pierre
Oh, Ellie...wonderful post. I have two suggestions: 1. Mantra (Joseph Murphy on the SubConscious) "Infinite Intelligence leads and guides me in every way. The laws of Harmony and the principles of Right Action govern my daily life." and then add your choice for the day, month, year - 'Health is mine. Grace is mine' and 2) Deep breaths to get in the zone - however many in takes on any given day - then visualize the tiniest molecule in your body, and slowly go from the cellular level to your whole body then up out of the top of your head. From there to the ceiling, see yourself get smaller as you go to the top of the building, over the rooftops, up into space and into the stars. Do this as slowly as you can - and try not to get too caught up in your imagination so you keep moving. The goal is connection to the Universe or Infinite Intelligence. Takes a couple of days of concentration if you haven't been doing it regularly, but you will "get connected" and the empowerment is breathtaking. You become light as a feather. All blessings and good Karma over the rooftops to you and yours in your bit of a village in Paris. oxo
ReplyDeleteI teach meditation...you provided great suggestions. Thank you for contributing here.
DeleteEllie, you inspire! When I was diagnosed with breast cancer, out of nowhere, my perfect life ended that day. With no one to teach me these methods and things happening so fast, I just did the best I could. I remember I 'had time' to read one bit of advice: when you feel like you're going to cry, promise yourself you will, when you get to the car. That helped me keep my dignity (and eye makeup intact). The rest is , like your issues, so out of control. Later, when I had too much time to think....I found the methods you wrote about and put them to use. When the 'monster' comes....I do what works. Somehow we get through it. I hope those who read this post realize how important these skills are to have in your pocket. I had no idea, until one day everything changed. We met Fear. I'll see you on the beach....I'll be the one singing 'Give me the Simple Life' (Steve Tyrell). Love to you.
ReplyDeleteI remember that I am never alone, that I am surrounded by angels and other loving beings.I remember surviving abuse and how strong I really am. I remember that God loves me and won't give me more than I can handle. I remember who I really am. Divine Beloved, please watch over Ellie and her family. Comfort her and let her feel your presence and love. Thank for her courage Lord and her love. Thank you for all of our blessings.
ReplyDeleteMy heart aches for you. I am so sorry you have to go through all this. For me, meditation is my tool to maintain equanimity. I am glad you do this too....getting to that place where there is no form, just space is bliss. Sending you healing thoughts. xob
ReplyDeleteEllie, I love your posts. You have a way with words and your style is great. I am so encouraged by your comment about trusting God. I remember months back when you weren't in that position and I was concerned for you. Your attitude through your suffering is evidence that He has been with you even when you weren't with Him. As God's word tells us in Philippians, he gives us the peace that passes understanding. May this peace be with you at all times, but especially in the times of panic and uncertainty as you continue the fight. We all have the struggle, whether it be physical or otherwise. God gives me strength each and every day and I pray that you continue to talk to him and trust him for your eternity. Have a great day. I await your next post!!!
ReplyDeleteDear Ellie, you are not only handling your medical and life trauma with more grace than you can imagine you are also showing so many of us how to do the same. I applaud and admire you with all my being. God is there for you even when it does not seem like it. I am so glad you have your loved ones with you and excellent caretakers.
ReplyDeletexoxo
Karena
The Arts by Karena
You have no idea how many women (people) read your blog and cry -- from the inspiration we so gratefully receive from you. You make all of us want to be better moms, better daughters-in-law, better wives, better mothers-in-law -- just better, productive human beings. Thanks - I think all of us are with you in spirit so I hope that will somehow help you on the bad days. Del Lancaster
ReplyDeleteEllie, nothing I have gone through yet, even compares to what you deal with every day. So, I have no advice to give, but I am learning so much from you. I'm learning about honesty; freedom from worrying about every word insulting someone out there in the cosmos. I'm learning about courage in the midst of pain and despair. I'm learning about the real value of life and love. I've always relied on humor, but have never had to put it to such a test. Someone in the one of their comments referred to you as a warrior.....that you are, my love. I can only add that you are THE BEST, ELLIE. Angela Muller
ReplyDeleteOh, Thank you. I have learned a few of these tricks along the way, but needed the reminder as I'm having surgery in a couple of weeks. As I do daily, sending you love and prayers. Mary
ReplyDeleteGod bless you through this!!!
ReplyDeleteI picture the passion and crucifixion of Christ. His beatings, crown of thorns and nailing to the cross is beyond any pain that I will ever suffer. I remember that He did it for me, for you, for all of us!
Totally amazing, gorgeous woman. So happy you have such a great husband and daughter that understand you. That in itself is keeping you strong, as you said.
ReplyDeleteI scrub tubs, take Valium, naps, drink wine and watch movies..while drinking wine...when I am in pain, am grief stricken ( lot of experience with that one) or just lost with anxiety and loss. Your ideas sound better. Music does not seem to work for me, but driving and crying...as one of your friends mentioned, is also good..but not after wine and Valium hahaha! Love you each and every day. You are a real hero of mine.
Probably you thought your purpose here was to decorate beautifully, which you do, or share your exquisite taste. Apparently there was so much more you were meant to do, such a divine purpose that it boggles our minds whenever we read a post of yours. You give to each of us a glimpse into what life means... the good, the bad, the ugly and the painful. I don't pretend to know all the tricks for getting through impossible times but I do know that you help all of us and I hope that you can feel the love and respect and gratitude from your readers.
ReplyDeleteWith sincere thanks for living each day as best you can and for sharing it with us...Candace
Ellie -- I would never dream of giving you advice on staying stronger than the situation. You are so strong. You inspire us all the time. You are simply amazing. So strong, so positive, so real. I admire resiliency and hard work in people. You have both of these. You are not a victim of your disease. You are a victor and live every day completely. I think that you think of your daughter to help keep you focused and strong and I think it works. I think you should do something nice for yourself each and every day. Something hat brings you joy. Wishing you the very best. Thanks for sharing your life with us.
ReplyDeleteYears ago I had a cat, that i loved very much, but had a nasty habit of sinking his teeth in to my hand at unexpected moments. I always ended up with some kind of awful wound, ouch. I tried everything to break him of this behavior, but to no avail.. Then one day I read that lions had teeth that curve in, once they got a hold of their prey it was very hard for said prey to get away..a light bulb went off...
ReplyDeleteNext time dear kitty sunk his teeth in to my hand instead of pulling away,and me yelping etc .. I gently and simply, pushed my hand into his chest. Instant release. Instead having the flesh on my hand ripped away it landed in his soft furry chest.. I never had a problem with kitty again...it always worked. Soon this techinque became a metaphor for me.. rather than rail against and pull away I push into a problem, a situation...I keeps me calm and more able to deal... it always seems to work.. but I think you have already figured that out.
It must take an amazing amount of.... well everything, to produce this blog.
Please know that your words never fall on deaf ears, it is all good and everything good in life.
To read & look at your photos makes me realize how precious my life is even more. I will never complain about anything again! You are one incredibly strong woman & an indeed a hero! I think of my painting, technical aspects of how to complete those art projects of mine & music. These are the 2 things I can't do without. Thank you for your bravery & a reality check today. Giant Hug!
ReplyDeleteHi, I likely would not have commented, but your pictures and words so touched me by your bravery and suffering. You go girl. You're a real tough one - and smart too. I would strongly suggest you seek out the Catholic Church and avail yourself to the Sacraments - one is the Sacrament of Healing. You can also go to the Blessed Mother, as well as directly pray to God, for her intervention. Jesus listens to his mother. Also, there are a great many saints who have been saints who can intercede for you for a miracle and this has happened many times. Some very holy people are currently candidates for sainthood and need to show a miracle for them to be deemed a saint, You can research the internet. Since you are in France, you can go to Lourdes where many healing miracles have happened over the years - a def. place for you to visit. I'm a convert to the Catholic Church, so I was once a doubting Thomas also about the Catholic Church. No more. I've always relied on the 23rd Psalm when the tough got going, and I've had much suffering in my life, so I know, in a small way, what you are going through. Trust in the Lord with all your heart. He will give you peace. You remain in my prayers. Thanks for sharing your life with others. What a powerful witness you are! God bless.
ReplyDeleteNever had a hero, until you.
ReplyDeleteOn tough days, there's nothing like a puppycam.
When they grow up, these pups will help wounded Warriors reconnect with life.
Miss you, my friend, Wendy
http://explore.org/live-cams/player/service-puppy-cam-3
Oh I couldn't suggest anything.
ReplyDeleteI am looking to you for strategies on coping...you are the queen of inspiration.
We all have something to fear and I think facing them head on with strength and courage, the way you do, is admirable.
Hope the sun is shining down on you in your beautiful city of light.
Ellie you are an inspiration to this 49 year young who does not have als, who does not have daily chronic pain, who does not need feeding tubes and BiPap......but as a trained critical care nurse working with acutely unwell people, my inspiration comes form you, even in their hardest times, I bring laughter into the picture, it doesn't all have to be doom and gloom, a light touch, a compassionate smile, a joke or two and sometimes some profanity works a treat to lessen the fear of a stay in hospital. Suzana
ReplyDeleteEllie, do you remember a while back I kept talking about "The Ellie Revolution"? Well, this is exactly what I meant. And Suzana, you are amazing. Thank you for all of the good you are doing...
DeleteI can't recall how I found your blog but man, am I ever glad I found it. Perhaps you tire of strangers telling you how fabulous you are to share the things you share with us. But, it's a fact. You are pretty damn fabulous. My life is enriched by reading what you present...from the design information you share to your description of your disease and the effects it has had, not just on you, but on your family and friends. I don't know why you have chosen to tell us certain things but I'm glad. Well, maybe not glad about some of the recipes. I can't cook so I just blow right through those posts.
ReplyDeleteManaging through panic - the healthy version includes some Stevie Wonder, some bird watching, getting the nippers out and deadheading some flowers, walking and talking, brushing our Siamese cats (they hate it), yeah, some counting of breaths or naming of things...the less healthy version includes frozen custard, Moscow Mules and new Prada boots. Or shoes!!! Actually, move the Prada to the healthy side. And, sometimes, I try all the tricks, and I'm still gonzo.
Thank you for your generosity. And your snarkiness.
Your friend in Pittsburgh,
Robbi
This is so true. Mind over matter. Out of nowhere I got anxiety around driving a few years back. It was so unpleasant I don't want to remember it right now. But I had to drive places and I found I could talk to myself and repeat things and do deep breathing while in a state of utter fear. I would say, "All shall be well," over and over again. I would do yoga breathing. I would narrow my range of vision somewhat so I was concentrating on what was in front of me and using my mirrors instead of the blurry peripheral vision which seemed to make it worse. Every time I drove I used these techniques and gradually over time it evaporated until one day it was gone. Also, I got a pill from my doctor to could carry in my purse that I knew I could pull over and take if it got unbearable. Just having it helped. I love all these techniques you are talking about. These can really help people and it helps me remember how much is possible if you can get your head in the right place. Love, K.D.
ReplyDeleteYou are amazing! When I feel that I can no longer go on, I think of my summer vacation in grade school, with my beautiful grandparents in beautiful Roatan, Honduras, when I did not have a care in the world and felt protected, and then I reassure myself that someday somehow I will feel the same, and then I calm down.
ReplyDeleteDear Ellie,
ReplyDeleteI wish I could bring you some of my home made chicken soup! You have been though so much, but keep such a sunny outlook on life. And funny, too!
Warmly,
AnneMarie
You are a "special" person that's for sure! I dk how you do it, you are an inspiration for alot of people, especially me! Make me sad to know what you are going through but boy you have a way of making it funny.
ReplyDeleteSending you alot of love from beautiful Quebec city, will have a thought today for you when I'm going to walk in old Quebec and I will be checking out the beautiful Chateau Frontenac. We need more people like you!
Girl from Quebec city
xoxo
Dearest Ellie,
ReplyDeleteYou are doing everything right my love! Trust your instincts. My instincts have lead me to mediation. The only thing that has helped me. It totally calms me down. Try to ride the wave and use self talk to tell myself: you will feel better soon. Surround yourself with love. I also speak to my Swami via skype in Australia who is a medical doctor with extensive training in healing yoga. Swami's website: swami.shankardev@bigshakti.com
Love your forever.
Hey Ellie, SHOOZ, I just found a reliable site for 65% off on Roger VIvier shoes.......thanks to you I love them......my ballets are
ReplyDeleteshot and I wear them all the time.....here's the site, you likely know it though.....SHOOZ, I will always love shooz....
http://www.rogervivier-sale.com/roger-vivier-flats-c-3.html
100* today.....walk out the door, soaked wet.......even too hot to sit on the Gulf of Mexico out my door.....no breeze.....
WOW......I'm in the A/C......ha ha ha......thank goodness for A/c here.....bought some SPIKE and made organic chicken
today......so GOOD.....the ingredients are yummie and with turmeric
http://www.vitacost.com/modern-products-all-purpose-original-magic-spike-gourmet-natural-seasoning-7-oz?csrc=GPF-PA-Food%20%26%20Beverages-075820204082&ci_gpa=pla&ci_kw=&ci_src=17588969&ci_sku=075820204082&gclid=CjwKEAjwnpSsBRDH3pT2-7q55R4SJABRiNyTR53ecJJ90vaH9fqy8NxKr_lcdc7-JM5WWFP3t97VuxoCXWPw_wcB
HUGS from across the pond, suzanne
YOU ARE THE BEST!!!!
ReplyDeleteThank you dear Ellie for your genuineness. This post and all of the comments to it are hugely powerful. What has worked for me when I am beset with fear is this mantra: "I am safe in God's strong arms." Another reassurance to me is this thought: "You can fall no deeper than God's arms." God bless you, dear Ellie.
ReplyDeleteEllie, I do not know you and haven't been long as a visitor to your site. In fact, just reading the above post saddens me greatly, not only for the trial you are facing but also for the wrong impression you are existing under. Our Heavenly Father is not here for us. We are here for Him. Each day He gives us is a day to bring glory and honor to Him, not to us. Even if that means we suffer. Even if that means we face unimaginable trials. Some plights are definitely more challenging than others. Just the other night I was watching a Youtube video about people in Africa infected with jiggers. It's horrific and something I cannot even bear to think would happen to anyone.....let alone those who really cannot do anything about it. I guess it's the same with ALS. It takes over and you are helpless. However, I notice that your opportunity seems wasted even as you blog about your disease. You want to serve YHVH, the Most High, but you watch House of Cards, a vile pathetic show that indulges the flesh? You desire some relief to your distress but your vulgar language indicates that your mind is not being transformed into a new creation?
ReplyDeleteForgive my presumptions but I can only respond to the information you have chosen to write about. It is sad. Your trial is difficult. My only reason for choosing to respond is to remind you and anyone reading this that our time here is short....no matter the circumstance or details of that time it is executed. Whether in health or in disease or in poverty or in terrible circumstances, the best we can offer is a voice that brings glory to the only One who can redeem that life and give us another one that will last for eternity. I commit to pray for you and I will ask that the days gifted to from this day forward, will be so radically different, that you will one day see them as the most excellent of gifts. My best,
Oh dear Marilyn. Usually I don't publish such stupid comments but today I thought I would because it's actually comical and I thought my readers could use a good laugh. Still trying to figure out what "YHVH" means but I don't have the time to look it up, or the care. I think my favorite part of your comment was the part about "indulging the flesh." I didn't know people still spoke like that. Your two paragraphs gave me a complete insight into who you are and what your life is like and to be quite frank, it scares me. Words like "redeem, eternity, trials, plights, glory and honor, transformation" indicate to me that you are a bit of a holy roller who most likely takes the Bible literally and thus uses it for your own judgment and persecution. Scary! I tend to think that people who get this cray cray with religion might just have some skeletons in the closet. Did you kill your family? Did you put your cat in the microwave? Did you poison your husband with arsenic? Did you run over your neighbor with your tractor? And my next question is, if you are so worried about my character and my "vulgar language" why do you keep reading my blog? Marilyn, you like me, you really really like me. Stop Bible thumping and just be a regular fucking person. Love, Ellie
DeleteEllie, you da' best! When I was in my twenties and knew nothing, I befriended a woman who had MS. A divorcee, when the disease worsened, she had to give up her young son to her former husband and the homewrecker and move into a group home. I'd go visit and try and wrap my head around what had happened to her. When my pea brain suggested that somehow she had this disease because "she could handle it", she kindly looked at me like I had three heads - not unlike your response to Marilyn. It was then that I began to learn that whatever we face, we muster whatever our character holds below the surface and use that to push back: against the disease or event, the fear, and particularly, the entitled idiots who feel free to comment out of complete cluelessness. I certainly learned "my lesson" and I hope the bible thumper above does as well. Rock on Ellie!! oxo
DeleteI think you are much stronger than most of us & with a bigger situation to cope with. Mostly you do seem to make each day a good day in some fashion or another. I have a medical condition that can be stabilized, but not cured. My go to help is becoming Namoi, I just pretend to be someone else. It does not always work and for me it is okay to cry when I just can not keep it in check. In the fusion room there are lots worse off than me. I give as many smiles as I can. I tell nurses I need the small needle. I close my eyes when there is a little tube attached when blood is drawn, that means multiples. I love how my huge dog lays the length of me when I crawl into bed, his breathing is soothing. A cocktail would not be my thing , but a bag of a favorite candy is a quick happy moment. Perfume. I dap a little of Chances under my nose and relax. I'm impressed with your list and glad other people need "tricks" to get thru. I have wondered how it is that you settled in Paris.
ReplyDeleteNo words but thank you thank you for this.
ReplyDeleteMarilyn,
ReplyDeleteAre you for real? After I read your post I stopped what I was doing and knelt down to pray for you. Quite clearly you have the wrong perception of our Heavenly Father. How sad. Our Father is here for us too, there are literally 100's of examples in the bible. I'm not about to get into a theological debate as that would be like trying to provide a college education to a first grader. You reprimanded Ellie for her language and the type of programs that she watches. If you walk the walk then talk the talk. Ellie always cusses...when you came to her first vulgar word...why did you continue reading? You want Ellie's mind "transformed into a new creation" yet you yourself continued reading her vulgar language.
"You hypocrite, first take the plank out of your own eye, and then you will see clearly to remove the speck from your brother's eye." Matthew 7:5 (NIV)
Please open your mind. Your post was ridiculous!!
Deep and true, Ellie. That's you. Thank you. It's important for the rest of us to see what that looks like, and you know what? It's utterly beautiful in its messy, complicated perfection.
ReplyDeleteDear Ellie,
ReplyDeleteFirst, I need to say how much I love your blog and want to be your bff! I love your attitude, wit and charm - and your eye for design. But most of all I love how real and honest you are. I cannot even for one minute imagine what you're going through but I too, share the burden of being a worrier. I've never ever commented on a blog post but felt the need to today after reading this. Your words are raw, pull on my heart strings and brought tears to my eyes. Sometimes my fear/anxiety is too much and I need to practice some of the tricks you've shared! So thank you for showing us the knitty gritty of ALS and the shit you go through. You are amazing!! Much love and prayers to you!!
Emily M.
P.S. I love hearing stories of your caretakers! I'm an RN so I'd be happy to quit my job, move to Paris and take you on!!
Your health-related posts are NOT AT ALL boring. Somehow you can talk about something terrible and make it entertaining and even amusing! Obviously, many of us can relate. One thing I discovered recently is "tapping" which can be looked up under EFT or FasterEFT. Simple, a little silly, but helps to calm me down. Now that I learned it, I do it mentally instead of physically. Loving your tips and everybody else's, too. Bless you!
ReplyDeleteDear Ellie, how I sympathize with the physical and emotional strain you have endured, and continue to endure. Sharing your calming tips and reading others is SO interesting. The best I think is having your daughter's beautiful eyes to look into and finding joy and gratitude.
ReplyDeleteIn comparison to yours, my 'worries' seem minimal but I too overanalyze (self-induced rosacea and ulcers) so had to learn to control my thoughts...still can't.
But for 2-hours/day, I'm in the woods walking with my pup, a.m. and p.m. We call him our therapy dog for many reasons. He's a small, young rescue someone found after he was tormented by some monster creep. He needs long walks, thank goodness, and I learned this can help me. Seriously, he brings balance to all (frantically barking dogs suddenly shut up when he's nearby, dog-owners react in amazement). In the woods, I began to sit on fallen trees/tree stumps to focus on admiring nature. Breathing. The dog voluntarily sits next to me. Afterwards I feel different. Can't explain it but it has helped!
Thanks for sharing your stories. And WTF, Marilyn?
It really is so easy for me to forget what you go through on a daily basis. How awful most of this sounds. Except, of course, for the deeply touching moments of your husband adoringly guiding you through AD and finding calm in your daughter's eyes. being the horribly adjusted person I am, I don't cope with most things very well. But I'm getting better. The big thing for me is recognizing the way I fight to control all situations and accepting when I have no control (isn't there a prayer about this? :) ). My mantra when I'm fighting this--in relationships or just a bad mood is "let go or be dragged". In reference to Marilyn, I have a friend who literally earns a living reviewing gay porn. And he does more charity work for animals and the homeless than anyone else I know. Including people who have their own charities. So I don't think viewing entertainment OF THE FLESH robs your soul of good.
ReplyDeleteDear Ellie,
ReplyDeleteI just read this post. I've discovered a few I missed the first time I binge-met Ellie O D.
You are the most amazing woman. I learn so much from you.
It is astonishing that you take the time and energy to share your ALS.
Beautiful. Bright. Funny. No bullshit. And I ADORE that you put nuts in their place. Never stop.
Thank you for reaching out to people who'd never have had the pleasure of your company without this blog.