I was diagnosed with multiple sclerosis in 2006. Although my life has taken many twists and turns since then, I’ve kept my chin up with my own brand of spectacularly relentless optimism.
Recently though, after taking our first family vacation in two years, I was feeling a bit down. Prior to this trip I hadn’t been well enough get on an airplane and travel much, so my husband and the boys had been vacationing without me, which I fully supported. I don’t think it makes sense for others to be deprived due to my limitations.
However, when we returned from our trip, I wasn’t feeling awesome. Some of my symptoms had increased and I felt somewhat anxious about that. I felt grumpy that instead of working out to feel good, I was digging myself out of a hole. It doesn’t really make much sense on a rational level, and yet, a lot was stirred up within me. I think travel does that to many people whether we’re dealing with chronic health issues or we’re in perfect physical shape.
In any event, to clear my head, I went down to our basement to have some quiet time. I wanted to move and stretch and do gentle yoga. As my mind cleared and my anxiety died down, I was filled with new feelings that were not familiar to me.
In my typical world outlook, everything has a reason. Even the smallest events have meaning, and my life is filled with purpose. But, for a few minutes, I let that view unravel and allowed my mind to wander. As my thoughts moved around, I wondered, what if I have this illness for no reason at all? What if I’m sick and it simply sucks? What if there are no lessons to learn? What if this isn’t supposed to make me a better person? How can I make any sense at all of the damage this disease has done to me, and by extension to my family?
For a few short minutes I let myself feel the weight of having been diagnosed with this serious neurological condition that we refer to as multiple sclerosis. I let myself truly understand the reality of it. From that I finally permitted myself to utter a silent complaint, and I fully came to terms with the fact that I don’t enjoy dealing with the limitations, complications, and baggage that hitchhike along with MS. The worst thought of the bunch swimming through my head? What if I don’t get well? Ever?!
In those few minutes, with all of those questions splashing around the ocean of my mind, it was the perfect time to stop thinking and let the tears sprout from my eyes and splatter across my face.
Then something happened. In letting go of my iron-willed optimism I was able to grieve a bit, and it felt good to be sad. It felt congruent. I had let go of some stubborn determination which was covering up anger and more than a touch of perfectionism. I had admitted to myself, that I don’t like this. In fact, I don’t like any part of it!
I’m totally ready to let go of this disease if that can happen. I work towards that end every single day in everything I do, from carving out enough time for sleep, to eating well, and getting just the right amount of exercise, along with prayer and affirmation. At the same time, I’m also ready to deal with whatever comes my way.
I’m relieved that I’m no longer forcing myself to pretend that I’m ok with the burden of this disease, because there’s nothing ok about living with a disability like MS. It’s awful for me, in ways that I will not go into here. It’s equally rough for my husband and children. They are tasked with the incongruity of watching a loved one suffer from a major illness, while carrying on with the normality of their everyday lives.
Erian says
Thank you for sharing this. It takes a huge amount of courage to put our stuff out there and so I honor that in you.
I was diagnosed with MS 13 years ago. I can relate!
I’ve been following your blog for a couple years and enjoy all your recipies. It’s nice to know we are not alone on this journey. In my day to day life there aren’t many who understand the amount of time and effort I have to put into my life just to have some level of normalcy. I’m grateful I’m able to put the effort in and open to exploring ways to better take care of myself AND sometimes it sucks. It sucks to have this disease now and again and like you I do better when I just acknowledge that.
Sending healing light to you!
Elana says
Erian, thanks for your beautiful comment. I’m so glad we are on this healing journey together :-)
Ruth McGhan- Zimmerman says
Thank you so very much, Elana! I follow your teachings and enjoy your recipes as I deal with Systemic and Discoid Lupus. I was diagnosed in 1995, although they think that I had it for many years before that. My Mom’s sister has it, as did a cousin on my Mom’s side of the family that died at a young age. I deal with constant diarrhea although I follow a very strict diet, along with meds, prayer, and exercise. My stomach hurts severely every time I try to eat. But I am thankful and push forward. I work 3 jobs, have no health insurance, and am very thankful for each and every day! Thank you for your words of encouragement! Blessings to you and your family!
Elana says
Blessings to you Ruth, you are an amazing person!
Jennifer says
Thank you for posting, Elana! I have had the same very gross cold for almost four weeks. Today in therapy I found myself discussing my feelings of frustration and grief of having MS and recognizing that I do not have the average immune system among other things. Everything tends to make me feel sickly and I have to adjust to that. I found myself realizing too that I have been mourning the loss of pre-MS me (very social, overachieving, fewer boundaries, people pleasing) which boldly presented itself after a weekend of stretching myself socially. I think I realised/am realizing more importantly the voice of this during-MS me (aware, present, more whole, boundary setting, self-caring) which continues to push through. I’m letting her take the lead.
I know I want to rid myself of this illness. I also know that it serves a purpose for me and others in this life whether I realize or not, whether I want this or not. My work is to live in the grey and not the black and white. That is the struggle. It is also where I can smile and say I did the best I could today. It wasn’t perfect. I’m not overjoyed, but I’m human and I’m still alive. And this is good.
Thank you for your bravery.
Elana says
Jennifer, I resonate with everything you said, especially this, “My work is to live in the grey and not the black and white. That is the struggle. It is also where I can smile and say I did the best I could today.” Thanks :-)
ChaCha says
This is your best. Letting go is where the spirit and soul live. Yours had to get out and be. Awesome! I’m sure you’ll take care of this pivitol moment! much love and God bless….
Elana says
Thanks so very, very much ChaCha :-)
Astrid says
HI Elana, I am a big fan of all your gluten free recipes due to celiac and I thank you for sharing all your recipes.. I am a practitioner in the Seattle area and I wanted to reach out to you and ask you to please check out http://www.Neurolinkglobal.com
Neurolink or NIS allows the practitioner to work the Nervous system via the sutures of the brain. It is a non invasive technique and I highly recommend that you seek out a practitioner. Dr Phillips who created this Health Care System is an MD out of New Zealand. We have Practitioners on the East Coast as well Please check out the web page and try this Health Care System! I think you will be pleasantly surprised. You are welcome to contact me via email if you would like!
Elana says
Thanks Astrid :-)
Sheryl Kaplan says
Hi Elana,
I’m so sorry to hear all that you have been going through these last years. I just wanted to let you know that I see a homeopathic Dr in Tijuana, Mexico who is also a medical Dr for my arthritis. I have watched and talked with so many people in his office over the last 9 years who also have MS. I have seen the miracles he has given to so many of these people that were in wheelchairs and are now walking with no lesions in their brain, back or any other part of their body. He does do stem cells along with many other things. I will send you his information and you can call & speak with him to make any decisions that would work for you. People come from all over the country for him. I call him my Miracle Man.
Anyways, here is his information: Dr. Jose’ Antonio Calzada A.. His San Diego telephone # is (619)754-4885. You may tell him that I referred you. Wishing you the best of luck.
Sheryl Kaplan
Elana says
Thanks so much Sheryl!
Selma says
Sheryl can I speak with you about Dr. Calzada? Please contact me at salabbas@comcast.net. Thank you!
Mary Burke says
Elana, I really admire you. Your words and recipes are so positive, high quality, and come from a heart of service. The pain you share is helpful to all, as we all have burdens to bear. I wish you the very best and will pray for you.
Elana says
Thanks so much for your beautiful comment Mary!
Pamela Wunderlich says
“Betrayal: The Autoimmune Disease Solution They’re Not Telling You.”
http://www.betrayalseries.com.
This free series is now available online. There are professionals from many fields researching and treating autoimmune disorders.
It is apparent you have obtained much insight into this. I thought you may find some additional pearls of wisdom here.
Bless you, your family and your future.
Pamela Wunderlich
Elana says
Thanks so much Pamela!
Shari Wagner says
Elena, this is by far your best post yet. Thank you for having the courage to be transparent with your readers about the real struggles you face. I agree with what Susan Lewis said above – you have a gift you are giving to so many. I swear, I nearly cried when I found your blog shortly after being diagnosed with Celiac, while searching for a good chocolate chip cookie recipe. To be able to make “regular” foods that didn’t make me sick, and to be able to have healthy alternatives to boot was just a godsend for me. Yours is always my go-to site when I need a recipe for anything, and as a fitness and nutrition coach, yours is the site I share most with my clients for healthy recipes whether they need to eat this way or not. Heck, I have your cookbooks and yet I usually come here first anyway!
I am sad that a serious disease is what caused you to create Elana’s Pantry, but at the same time I am so very grateful you’re here. Thank you for all you do!
Sincerely,
Shari
PS – your chocolate pumpkin pie was SOOOO amazing!!
Elana says
Shari, thanks for all of your support that comes in countless ways! Since I am so comfortable writing recipe posts, it’s very nice to hear you say that this is by far my best post yet :-)
Leslie says
Elana – you are a HERO to so many, especially me. I could tell you my struggles, but I want this one to be all about YOU. I am incredibly grateful to you and all you do.
I hear you about allowing yourself to grieve – it can be a very positive experience – like flushing out the toxins!
Elana says
Leslie, I totally agree! What a fantastic analogy :-)
Kathleen says
Leslie,
You have said this better than I could have.
Lana,
As you already know we all have some kind of loss(es) in our lives. Keeping our chin up only works if we can and do grieve for those losses. (A long time learning lesson for my chin!) You are an inspiration to many of us in your extended tribe. I ask God to continue to bless you and your family.
Elana says
Thanks for your support Kathleen! I truly appreciate it :-)
Cris says
Elana,
Please look into Anthony William’s book, The Medical Medium, and see if it speaks to you. Especially so if you have had Mono, or EBV in the past. There is a chapter on MS in which he explains what MS really is and how to cure it. Coming from a medical background, its a definite eye opener with many validating “ah ha” moments. I believe you will relate in how he treats with food being thy medicine. Warning though, this book may challenge your beliefs and alter your diet. His second book, Life Changing Foods, is a game changer as well. You can find him on Hay House Radio or on Soundcloud. I listen to his shows while I cook and I know first hand his suggestions, foods, herbs and supplements will heal what ails you.
Be Brave.
Be Well,
Cris
Elana says
Thanks Cris! I got that book in November 2015 when it came out and it has been helpful :-)