I paint pretty pictures with a dirty brush.

DISCLOSURE:  I do not wish to harm myself nor do I plan to do something that can impact my friends and family negatively. 

Now that I got that out of the way I hope you will read this with compassion and kindness. 

For a little over a month, my walking has gotten worse.

Multiple sclerosis is supposed to be a slowly progressive disease. But there is nothing slow about realizing one morning that something you were able to do a few weeks ago has suddenly become harder.

I call it ANTS- And Now This Shit

Like everything was cool last week, and then All of a sudden now this shit, getting into bed requires a strategy.

All of a sudden, taking a shower feels like work.

Getting dressed takes more energy.

Standing takes more thought.

Walking requires concentration on movements most people never have to think about.

I spent most of the summer telling myself the heat was responsible. Once summer ended and New York cooled down, I thought I would return to wherever my old normal was.

Fall is here.

I am nowhere near it.

And for the first time in a long time, I feel sorry for myself.

I don’t even like admitting that.

I built a pretty good mental space over the years. A place where MS exists without being allowed to consume every part of me. Gratitude lives there. Humor lives there. My spirituality lives there. My family, writing, hope, and stubbornness all live there too

Lately, my ego has been tearing the wallpaper off the walls.

I keep thinking about everything my body used to do without asking permission.

I want to go outside on the weekends. I want to do things. Sometimes I even get annoyed when I have to say no.

But wanting to go and physically handling everything required to go are two different things.

That distinction is becoming harder to accept.

When I first got sick, everybody seemed alert. Doctors. Nurses. Friends. Family. The people living with me.

MS was new. It was scary. Everybody wanted to know what was happening.

Years later, life moves on.

Maybe people assume I have learned how to handle it.

Maybe they know there isn’t much they can do.

Maybe I have become so good at saying “I’m good” that people started believing me.

Part of this belongs to me too.

I don’t ask for help enough.

Sometimes I enjoy challenging myself. Completing something difficult gives me a sense of independence MS hasn’t taken from me yet.

But sometimes independence crosses a line into stubbornness.

There are situations where I should ask for help and don’t. A fall isn’t some abstract possibility for me. One wrong movement near concrete, a curb, a bathroom floor, or a transfer from my wheelchair can become a serious injury.

Still, I try.

Because asking for help with everything does something to you.

And lately I am tired of needing things

Doctor appointments and infusions have started showing me this more clearly.

Going there alone has two parts.

The physical part is obvious.

Getting there. Access-A-Ride. My wheelchair. Bathrooms. Transfers. Sitting comfortably. Back pain. Stiffness. Making sure I have everything. Getting home.

The second part is harder.

Being alone with my thoughts.

I sit in those rooms thinking:

Why am I here alone?

Please don’t ask me too many questions about how I’m feeling because I’m going to say I’m good.

Except I’m not.

If you looked closely, you would know.

My back aches constantly. I hunch forward because sometimes it is the only comfortable position I can find, and then I wonder if doing that is making my walking even worse.

Sometimes cannabis helps loosen my body and quiet my mind enough for me to get comfortable.

And sometimes nothing works.

I have become talented at painting beautiful pictures with dirty brushes.

“I’m good.”

“I’m managing.”

“It could be worse.”

“I’m thankful.”

“I’m good as could be doc.”

None of those statements are lies.

They are simply incomplete.

I am thankful.

I also feel lonely.

Both things get to exist at the same time.

That loneliness doesn’t always mean nobody loves me. I know I have people who love me.

It means I feel alone in the responsibility of keeping myself going.

I schedule the appointments.

I go to the infusions.

I deal with transportation.

I monitor my body.

I work.

I worry about work.

I think about what MS is doing today and what it might do five years from now.

Then I am supposed to somehow reassure myself about the future while being the same person frightened by it.

That shit gets exhausting.

Even at work, I notice the difference in myself.

Recently my manager tore me a new asshole and I barely responded.

Anybody who knows me knows Corporate America has never scared me. I know how to write one of those professional emails where every sentence technically belongs in an employee handbook but somehow still translates to:

Fuck around and find out.

Lately?

I don’t even have the energy for that.

That concerns me more than the argument itself.

I haven’t been calling my friends as much either.

It isn’t because I stopped loving them.

I don’t have much to say.

Or perhaps I have too much to say and don’t know where to begin.

I think I might be sliding into depression.

I don’t know.

I haven’t seen a therapist in almost a year, and I am not going to diagnose myself from inside my own head.

But I know myself well enough to recognize when something has changed.

I am quieter.

More withdrawn.

More consumed by what I have lost.

More afraid of what comes next.

And tired of always having to be the person who picks me back up.

There is something else I am starting to understand.

Strength does not mean doing everything alone.

Maybe I have confused those two things for too long.

There is pride in independence. There is dignity in doing what I still have the ability to do.

But there should also be dignity in saying:

I need somebody today.

Not because I have given up.

Not because MS won.

Because I am human, and this is heavy.

I don’t need anyone to fix my multiple sclerosis.

I know they can’t.

I don’t need motivational speeches or someone reminding me how strong I am. Trust me, I know. I’ve been carrying this shit for years.

Sometimes I need someone beside me while I carry it.

Right now, I don’t have a neat spiritual lesson to wrap around this.

I don’t have an inspirational ending.

What I have is honesty.

My body is struggling.

My mind is tired.

My future scares me sometimes.

I feel lonely even though I am loved.

And I need more help than I have been willing to admit.

Perhaps acknowledging that is where I start.

Not by picking myself up alone again.

By finally allowing someone else to reach down and help.