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.