A new way of loving myself deeply: My diagnosis of Multiple Sclerosis.
I went to the doctor yesterday and she told me: “Kristin: THIS is the hardest part – the part when you are waiting to begin treatment and it is all so new. You don’t need to be UP or ON or optimistic. It’s totally okay to NOT be okay right now.”
I broke down into tears and she handed me a wad of Kleenex from one of the six boxes in the examination room that upon closer look, seemed to be strategically placed near every piece of equipment. It was as if she knew that at any moment of the medical evaluation, whether on the table or at the scale, patient tears may flow, and she wanted to be at-the-ready to lend a tissue.
With her words “It’s totally okay Not to be okay” a weight was lifted and I opened up like a flood gate. It was like she had been reading my mind and saw straight through me.
I had been chatty at the start of the exam; funny even. I made jokes when she asked me: “How are you feeling today?” and I quipped with a talk show host accent, “Well other than the brain lesions, constant pain, and near paralyzing exhaustion, I am totally great!”
The truth was, I was NOT okay and the past three weeks since my MRI and first round of diagnostic appointments, I had tried to mask my fear with dignity and positive self-talk mantras. I told myself, “Multiple Sclerosis was not what it used to be,” and “I am going to be fine.” I tried to jump right into a fearless faith without acknowledging the worry and fear that bubbling just below the surface.
In truth, I didn’t feel fine.
I felt supremely scared of the unknown; of not knowing what to expect for treatment; of the unplanned-for expenses; for how much I would or wouldn’t be able to work; for who I would be if I weren’t always doing/being/trying so much.
Multiple Sclerosis: What does it mean?
What do I mean when I say that I have Multiple Sclerosis or MS?
In a nutshell, It is a chronic disease where the body attacks itself. The immune system attacks the nerves in the body and breaks down the fatty protective coating of the nerve cells called the Myelin sheath. Without the protective layer in place, nerves become damaged and the brain can’t send signals to the body the way that it should to help you move properly and to feel, both emotions and physical sensations. Scar tissue can show up in the brain and spine and begin to affect the activities of daily living.
There are four kinds of MS and everyone who has it experiences it differently. It tends to run heavily in white women who live in northern climates, (there is a connection with lack of Vitamin D and MS) although anyone can get get it. There is some link with MS to viral exposure that occurs in puberty, the effects of which can lay dormant for many years. It is chronic and incurable, however not untreatable.
The disease I was not expecting, but the change I truly needed.
No one ever expects Multiple Sclerosis. When my diagnosis came, it conjured up images of wheelchairs, paralysis, endless drip bags and infusion therapy, and loss of independence.
That is the way that it was in the not-so-distant past.
Current treatment is radically different from what it was even a decade ago. I have been assured by my doctors, and both my friends and family who know someone with MS, that “these people are the most kick-ass people that they know.” (I have heard this over and over again and I am optimistic about the carpe-diem, fact-facing hard-coreness that comes with chronic disease.)
My patient advocate even asked me: “Are you ready to stop tolerating any bullshit in your life?” Once I got over the Tony Robbins-esque tenor in her voice, I said a grunting “YES!” with the same kind of teeth-gritting tenacity and relief I felt after the labor and delivery of my 1st daughter.
Truthfully, I had not felt well for months.
I worried that I was in a cycle of depression and that my severe lack of motivation was a result of some cosmic judgment on my capabilities as a human. (Yes, quite dramatic – but I am never one to go at things quietly!) This kind of bad stretch had happened before and I had cycled through, feeling some relief and then onto progress, growth and elation in my life.
This past autumn, I felt like I had been running in mud – way more tired than the working-mom-tired I had normalized since I had kids, and scared of the weird changes in my vision, the lightheadedness, and the dizzying nausea. I had chalked it up to my busy travel schedule and promised myself that I would schedule myself differently in the new year.
I was beginning to turn on myself, telling myself crappy stories like: “You just need to work harder. You are not enough and will never be enough. You are never going to make it in this life.” While on the one hand I knew these thoughts were lies and just plain wrong, there was another part of me that believed it – the part that I had worked so hard to change and transform.
I had an old story that was trying with every thought to keep a grip on my life. It found fertile ground in my fatigue and illness. I told myself such shitty things and bullied myself. I thought I was cursed and that I somehow I deserved to suffer.
Then came the diagnosis of Multiple Sclerosis
Was it a weird sense of relief? Yes. It totally was.
The first thing I actually said to my husband was: “This is a gift” and I meant and felt that wholeheartedly.
It was almost instantly that I reframed everything that I was saying to myself about my symptoms. I realized that many of the cycles I had experienced in the past were probably part of the disease course. It was an opportunity for me to observe that self-doubt and blame in a new light. I laughed about it. I cried, and then laughed and cried some more. I realized that I didn’t need be so hard on myself and that “bad thoughts” were just thoughts, and feeling fatigued was just feeling – and not some greater judgment on my abilities as a human. I needed to be okay with it ALL – and let all the feelings flow through.
Now, as I step into therapy, I realize that the most significant treatment will come in the way that I treat myself. The biggest opportunity is to be present, to observe, and to be fully loving toward myself in everything that comes my way.
My friends have asked me: “What can we do for you to help you?”
My reply? “Tell me stories of people who have succeeded and overcome, and let’s kick some ass in everything that we do.”
More to come as treatment continues and I continue on my path of radical self-love.
Love you Kristin…!
Thank you Leslie. I deeply feel the love and support. I means the world to me to have such an amazing group of friends and such positive and loving energy around me. That is such a gift. I appreciate you!
The difference in treatment is amazing and as always you are too. But remember it’s ok not to be ok, you may not need us all the time but there are so many people behind you!
I definitely have my full-on science brain in action right now. My med team is incredible and we have a host of things we are going try over the next year. I am SO amazed with the progression of treatment and how current med regimens can be a total game-changer. I am really looking forward to feeling good again. Thank you for your positive thoughts. xoxo
Kristin, you are the bravest and the most uplifting person, I ever had the pleasure to meet. Your compassion for your family, friends, and others is truly inspiring.
God will stay with you as you face your newest personal challenge. You will never be alone. Love you, Linda
Thank you Linda. You are so kind and always so open and loving to me and my family. I appreciate your thoughts and love. xo
Much love and support to you and your dynamic spirit. You got this down ! 🙂
Thank you my friend. I appreciate your humor and joie-de-vivre.
Your posts are always so relatable. You are either deeply feeling some delicious dish or hug from your family, or sharing about hope and fears. You are, in many ways, completely available to the world. And you allow the world to be available to you. While I cringe at the thought of all the shit that’s coming your way, I know that you are the “bad-ass” chick I will tell stories about. If anyone can beat the crap out of MS and still live a full life, it’s you! Xoxoxo
Charity, Thank you so much for your feedback and loving words. I have been thinking a lot of what I have to share and what I have to say. The best I can do I to share IT ALL fully. We can all feel so alone at times and I know that it feels so good to hear stories from other people who are living through the same kinds of experiences. Thank you for your radiance and happiness – you are always such a light every time I see you.
No matter what crops up in our lives, it really does seem to be all about love. Problems are opportunities (yes?) and people who are pains in the asses are angels in disguise, giving our souls whatever we need to grow. You are a bright light, impacting not only your family but lots of others as well. This is a great time to choose the energy you want to be, do/create what calls to your heart, and have the time of your life! Much love, hope, and healing!
Yes, I agree. It always comes back to love and what I want to create and focus on. It’s about allowing that love to come through me each and every day. I DO feel as though this is a gift of love – which may seem like and unconventional way to look at disease. I am not naive to the realties that I will face, but I DO believe that holding myself in the light of love will be the greatest treatment I can give to myself. Thank you for your kind words.
I just read your Facebook post and blog. I have known many strong women who have MS and while they are affected by it, they fight with great dignity. They go on—love, give back and live their lives. None of them are quite like you though. Strong, positive, lover of life—intense woman, great mom, wife and friend. If there is a person on this planet that can learn to kick MS square in the balls…it’s you. Fight baby fight.
We love you and we’re rooting for you and your family. If we can do anything to help you, let us know. Prayers, good vibes and cheerleading just the start.
Grant, Thank you so much. It’s funny, but I keep hearing those same sentiments over and over again and it gives me a lot of hope. Something changes in you when you are faced with this illness. It’s a kind of clarity and focus that makes all the other unimportant stuff seem trivial.Thank you for your prayers and positivity.
I was diagnosed with multiple sclerosis in 2005, and I was 40. They put me on Rebif which I took until 2008 and was switched to Copaxone. I had two relapses on Rebif, none on Copaxone. I noticed my balance getting worse, and my memory, as well as muscle spasms. I’m 54 now, In Febuary this year my neurologist referred me to Organic Herbal Clinic, i immediately started on their natural organic MS Herbal treatment. I had a total decline in all symptoms including the balance, fatigue, muscle spasms, Pain, excessive urination and others. Visit Organic Herbal Clinic web page ww w. organicherbalclinic. c om. The MS treatment totally reversed my Multiple Sclerosis condition and most amazingly i can go about my daily activities!
Karen, Thanks for your thoughtful comments. I truly wish you the BEST in your continued treatment and healing. I always appreciate ideas and love to hear how patients have been helped through a multitude of treatments. I am so glad you are having a positive experience on your new treatment!
I was diagnosed with Multiple Sclerosis (MS) in October 2012, at the age of 44. I woke up one morning with numbness in my lower back and legs, I couldn’t feel my feet touching the floor. I saw my doctor and had an MRI to see if I had a disc problem, it was negative and she told me she feared MS. I was sent to a neurologist, had two more MRIs, and was told that night that I have four lesions on my spine MS. I tried every shots available but nothing worked. In 2015, my neurologist and I decided to go with natural treatment and was introduced to Organic Herbal Clinic natural organic MS Herbal formula, i had a total decline of symptoms with this treatment, the numbness, terrible back pains, stiffness, body weakness, double vision, depression and others has subsided. Visit Organic Herbal Clinic official website www. organicherbalclinic. com This treatment is a breakthrough for all suffering from Multiple sclerosis, i am strong again!
Cindy, Thank you so much for sharing your resources. I am so glad that you are feeling better and the you have experienced a breakthrough. My very best to you for your continued health!