I'm No Longer Getting Better But I'm Finally Healing

Is it giving up or growing?

“Your MS has progressed.”

Even though I knew it deep down inside for a while now, the fact that none of the doctors had not yet said it, I was somehow protected from it. Yet now as I sat in the MS Clinic of the teaching hospital, those words made me feel shaken, small, afraid. Weeks later, after many tears and more tests, I would slowly begin to also feel a sense of relief. Like there was finally an explanation to why so much was changing. But at the moment the doctor said it, I climbed out of myself to watch. Like a movie. The movie of me. In this movie currently, I vacillate between feeling hopeful and terrified. Every time I seem to learn my lines, the script changes.

First of all, to me “progression” seems a funny choice of words. Why don’t we just say it has gotten worse? I guess because it is just doing its thing, moving along, making progress? Weird. I have a love of words and metaphors, and reading into things that seem set, yet really aren’t. So, am I making progress living with the MS? Have I not learned my lessons, and come to know myself better because of this uninvited guest? Or is this all a way of keeping me from falling apart? Like if I am no longer trying so hard to get better, who the hell am I? Do I keep on trying so hard to get better, I mean after all these years it’s kind of exhausting. Does it matter?

I have always had a love/hate relationship with being vulnerable. I am far more sensitive than I have let most of my world even see. I spent many early years allowing the rawness to breathe, only to have it mocked or violated. So for much of my adult life it made sense to fiercely guard this tender terrain. Where it always snuck out was in the nurturing, as I am a nurturer by nature. I hold a fierce love that wants to always be shared. Yet I think for a lot of years I gave myself the emotional scraps sometimes. That can be easily overlooked or explained away, as we raise our children and care for others. We get busy, we get tired, we push ourselves to keep going despite the aches.

I can now see my futile attempts at not allowing my sensitivity to engulf me, was actually me being less than kind to myself. Yeah, I know that deeper down it started as an act of self preservation, a sort of painstaking way to armor up all the most delicate and bruised spots.

This past year has had me navigating these sacred badlands. I have actually set up camp here now, attempting to unpack what has kept me away this long. I have uncovered that I hold a tremendous amount of compassion for these territories within that have long been hidden, places that I would occasionally try to visit, yet was always kept out by the protective sides of me. Yet this tender reverence for myself and what is was not an easy find. It was trapped far beneath a lifetime of rubble, of physical and emotional upheavals and traumas.

This may be where the writing goes next, how I excavated treasures from the rubble? Can that even help anyone?

Multiple Sclerosis has been with me for over forty years. I have had a pretty good run, despite this. For decades I have been able to fall down hard, yet get back up, quickly and eagerly. I had deal with lots of pain daily, always wise at night, yet much of the other MS crap (things like numbness, difficulty walking, spasms, bladder issues, vision changes, vertigo, awful fatigue) would simply be intermittent, and therefore manageable. I some ways, I still felt “unstoppable!” I had numerous difficult flare ups, yet how cool was it that I could come back from them all seemingly unscathed? In late 2022, this would slowly begin to change. I suddenly seemed to no longer come back 100% from flares. I found myself with Covid, then Strep. Of course these illnesses made my MS crankier, so even after I recovered I was still not completely well.

I think that it had felt safe to see myself as unstoppable, to see myself overcoming MS or at least “living with it neatly.” That was then. Now feels so different. Just in this past week I am adjusting to the fact that I was almost completely bedridden for 2 days, had to miss time with family, and caring for grandson, only was able to do my daily walk for 2 of the days, had to use my cane more, am closer to deciding to “retire”my healing work with clients. I have come to hate how often I start to feel better and happily restart work, but then shit hits the fan and I’m left rescheduling and keeping dear folks waiting. I was so certain I could manage my time to do it all, even with the changes. I have stubbornly refused to see myself as someone disabled, that no longer could adjust my schedule to keep stuff going, yet had to somehow find the courage to admit that it was time to let some stuff go, even stuff that really mattered.

I can no longer do it all.

It used to feel like defeat, just thinking about saying that. Yet at this moment, it feels a bit more hopeful. It’s been hard enough to maintain friendships as I often have to cancel well made plans at last minute. I don’t make as many plans anymore, but still try to keep close to a few folks that haven’t given up on me.

Photo by Anthony Tran on Unsplash

I find myself in a space where I must totally focus on my own healing. I certainly have done this before, yet this time it is a much more involved ask. This is a big task, and it’s about time to accept my limitations. May I let go with some grace, and may whatever fuel left in the tank still be enough for time with my beloved grand babies.

I am coming to terms with my “new normal”, and this feels like a whole other level of change, taking the absolute unpredictable nature of MS to another dimension. I especially am having a time with the cognitive issues that have tiptoed in. My bandwidth has lessened, I find myself having to not engage with the online world the way I used to. This creates some apprehension, as I ponder how I can still show up to my writing, and to be there for others.

I shall be starting a heavy duty treatment in the next week or so. Apparently I am a good candidate, and my labs have all been promising so far. These are newer MS drugs, that may be able to halt some of the progression. I am hoping that there won’t be too many uncomfortable side effects.

For a friend on the arrival of illness
By John O’Donohue

Now is the time of dark invitation
Beyond a frontier that you did not expect;
Abruptly, your old life seems distant.

You barely noticed how each day opened
A path through fields never questioned,
Yet expected, deep down, to hold treasure.
Now your time on earth becomes full of threat;
Before your eyes your future shrinks.

You lived absorbed in the day-to-day,
So continuous with everything around you,
That you could forget you were separate;

Now this dark companion has come between you.
Distances have opened in your eyes.
You feel that against your will
A stranger has married your heart.

Nothing before has made you
Feel so isolated and lost.

When the reverberations of shock subside in you,
May grace come to restore you to balance.
May it shape a new space in your heart
To embrace this illness as a teacher
Who has come to open your life to new worlds.

May you find in yourself
A courageous hospitality
Toward what is difficult,
Painful, and unknown.

May you learn to use this illness
As a lantern to illuminate
The new qualities that will emerge in you.

May the fragile harvesting of this slow light
Help to release whatever has become false in you.
May you trust this light to clear a path
Through all the fog of old unease and anxiety
Until you feel arising within you a tranquility
Profound enough to call the storm to stillness.

May you find the wisdom to listen to your illness:
Ask it why it came. Why it chose your friendship.
Where it wants to take you. What it wants you to
know.
What quality of space it wants to create in you.
What you need to learn to become more fully
yourself
That your presence may shine in the world.

May you keep faith with your body,
Learning to see it as a holy sanctuary
Which can bring this night-wound gradually
Toward the healing and freedom of dawn.

May you be granted the courage and vision
To work through passivity and self-pity,
To see the beauty you can harvest
From the riches of this dark invitation.

May you learn to receive it graciously,
And promise to learn swiftly
That it may leave you newborn,
Willing to dedicate your time to birth.

These beautiful words have been offering me great comfort. May they also bring you ease today.

I appreciate you walking beside me.

gentle love,

Tracy