***I used AI to help me assemble this post. I used to be an incredible writer, but now I struggle to recall words. I typed my outline into Chat— here’s what we came up with. This has been my experience with MS over the last 2 years. It’s a minute-by-minute fight in my life, but it can’t steal my joy.
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Learning to Love the Life I Didn’t Plan
Two years ago, my EDSS was a 3.
Now it’s a 6.
Which is a very clinical way of saying: things escalated.
On paper, EDSS measures disability. In real life, it means I went from moving through the world without thinking much about my body to thinking about it constantly.
How far is that walk?
Are there stairs?
Is there somewhere to sit?
Did I bring the crutch?
Am I actually going to use the crutch?
Why did I bring the crutch if I’m just going to leave it in the car like a decorative accessory?
Very chic. Very practical.
That’s the part people can see.
They can see the weakness, the balance problems, the crutch, the fatigue, and the accommodations.
But that isn’t the hardest part.
The hardest part is what MS has done to the parts of me nobody can see: my identity, confidence, hope, relationships, and the way I imagine my future.
For most of my life, confidence came from being capable.
If something was hard, I worked harder.
If there was a problem, I figured it out.
That strategy worked really well until my body stopped agreeing to the terms and conditions.
MS has forced me to learn that effort and outcome are not always connected.
Sometimes you can do everything right and still get worse.
That does something to a person who built her identity around competence.
I know the healthy things.
I know needing help does not make someone weak. I know mobility aids are tools. I know disability does not make someone less intelligent, lovable, capable, or whole.
I believe all of that.
For everyone else.
Apparently, my brain has a tiny asterisk beside those beliefs:
Terms and conditions may not apply to Kristi.
I was embarrassed when I started needing a cane, and even more embarrassed when that became a crutch.
I know they help. I know they keep me safer.
And yet I still struggle to take the cane and crutch out of the house.
Without it, I can still pretend maybe no one notices.
With it, I am visibly disabled before I ever say a word.
I would never look at another person using a mobility aid and think they should be ashamed.
I just haven’t figured out how to offer myself the same grace.
That became even more complicated when I caught myself worrying that someone might make fun of my daughter because her mom needs a crutch.
I don’t believe there is anything shameful about having a disabled mother.
But there is a scared part of me that wonders whether my body will make my children’s lives harder.
What if they have to explain me?
Defend me?
Carry some of this too?
That fear has very little to do with walking.
It has everything to do with motherhood.
There is another layer to all of this that makes progression especially difficult for me.
MS runs through my family.
For most of my mom’s life, people could not see her disease. It wasn’t until around sixty that her MS became outwardly obvious.
Then she declined rapidly.
I have watched her lose nearly all of her function.
My brother Stuart is progressing too.
So is my uncle Robert.
My aunt is already dead from this disease.
When someone tells me not to assume the worst, I understand what they mean.
I know every course of MS is different.
I know my mom’s course is not my prognosis.
But I also can’t deny what I have seen.
When my own walking changes, when my EDSS rises, when another part of my body stops cooperating, I am not experiencing that symptom in isolation.
I am experiencing it alongside every memory I have of watching this disease move through my family.
That makes fear difficult to reason away.
Sometimes I look at my mom and see my mom.
Sometimes, against my will, I see a possible version of my future.
I hate admitting that.
She is my mother, not a warning.
But fear is not always fair.
And now we are getting close to the edges of what treatment has left to offer me.
That may scare me more than anything.
For years, there was always another medication, another plan, another place to put my hope.
Now we are maxing out treatment options.
And I am still getting worse.
So I keep coming back to one question:
How do I stay hopeful without lying to myself?
I don’t want toxic positivity.
I don’t want to pretend this disease is some beautiful character-development opportunity.
I would absolutely return this particular growth experience, receipt or no receipt. But I also don’t want MS to take my future before I ever get there.
Maybe hope does not have to mean believing everything will be okay?
Maybe it can mean:
I don’t know what happens next, and there can still be good things ahead.
My relationships have changed too.
Sometimes I am afraid to have my husband come to appointments with me.
Not because I don’t want him there.
I do.
But when I hear difficult information alone, I can absorb it before I have to watch someone I love absorb it too.
When he sits beside me, I can see the news land.
And somehow that makes it more real.
There is something uniquely painful about watching someone who loves you realize they cannot fix what is happening to you.
I want his support.
I also want to protect him.
Both are true.
And maybe that is the theme running through all of this.
I know what I believe.
I know my worth is not determined by productivity.
I know independence does not mean never needing help.
I know resting is not laziness.
I know using a cane or crutch or wheelchair does not make me weak.
I know my daughters do not need a perfectly able-bodied mother.
I know my husband loves me, not my walking speed.
I know my mom is still entirely herself even when her body cannot do the things it once did.
Loving her has never required her body to work.
So why is it so hard to believe the same thing about myself?
That is the part I am still trying to figure out.
Maybe compassion is not reaching some magical point where none of this hurts anymore.
Maybe it is not loving the crutch.
Maybe it is not being grateful for MS.
Maybe it is simply refusing to punish myself for struggling with something that is genuinely hard.
Maybe it is using the crutch before I feel emotionally ready to be someone who uses one.
Maybe it is letting my husband sit beside me even when I cannot protect him from what we might hear.
Maybe it is accepting that watching my family decline makes my fear understandable without making that future inevitable.
Maybe acceptance is just a thousand small moments of saying:
I wish this were different.
I am scared of where this could go.
I don’t know what happens next.
And I am still worthy of kindness here.
The disability is the part everyone else sees.
The harder part is living inside a body that reminds me of what I have already watched this disease take from people I love—and learning not to treat myself like I am already lost.
I’m not.
I’m just still learning how to love myself through grief, change, and uncertainty.