Ugly Like Me...

Multiple Sclerosis-Friendly New Year's Resolution

The other day I googled the New Year’s resolutions. I found a Washington Post story that listed the most popular NY Resolutions. They went like this:

Get Fit

Eat well

Lose weight

Gain weight

Family Time

Save Money

Volunteer

All of these, in some way, were  familiar. Somewhere along my 37 years of lovely life, each one had a significance; even, I dare say, the gain weight resolution. I wouldn’t understand that one until my third decade of living when I was labeled ‘sick’.

The New Year is always strange to me. There’s something magical about my babies, watching the magic of the season unfold before their eyes. And then, they do just that. Everything is unwrapped and the magic is over. If I’m not careful, I can sink into a depression. BUT, if I get a running start now, I look at the New Year as new beginnings.

A new chapter filled with possibility. Fuck physical gifts, give me hope and strength; and yes, even MS. So, I’m a little goofy and I think about it well before it comes. And sometimes, I even Google it.

So, staring at the list of possibilities, I noticed something -all of those resolutions are daily for someone with a chronic illness. For my friends who are newly diagnosed, and the ones who are really struggling right now, I felt like I needed to write this for you.

It’s the greatest bit, or CHUNK, of wisdom I’ve learned since my diagnosis. In order to manage, and even heal, your disease, you need to do a little bit of all of these every day. For instance, you can’t be hyper-vigilant with nutrition and let the all the other areas fall to the wayside, and expect to heal. It doesn’t work. I tried it. I shall share my story of epic-failure with you.

I used to focus on nutrition and work. I had to make money to help support my family. In my head, it wasn’t a choice. I HAD to work THAT much to ‘provide’ for my family. Rest, relaxation, stress, those were all frivolous desires. What a daulty and dangerous outlook I had. The proof was in my body.

You can’t overlook exhaustion and stress, it will fuck you up. I’m saying that as strongly as possible for a reason. They aren’t negotiable. As I continued to live like a tornado, my body progressively got worse. I had to begin the most extreme, scary, type of treatment to stop the progression and to keep what mobility I had left.

While I was on the right path nutritionally, and made money, my body was literally falling apart. My weight plummeted to 104 lbs. I could barely walk. My walk was reduced to a scoot, BUT I could only scoot if I had something to hold onto.

It came to a point where I had to ask myself-Can I keep everything up at this rate? What is the cost? The answers came hard. I couldn’t afford to teach AND freelance. I couldn't afford to live in my house. The cost would be my life, my family. The cost would be everything.

As a family, we had to make some very hard choices. Career, house, everything had to be uprooted in an effort to simplify and balance. You can juice all you want, but if you don’t sleep it is physically, biologically, impossible for your body to heal.

The thing with MS, and this is where The Spoon Theory comes in, is you only have so much energy to expend. Choose how you spend it, carefully. 

When you work multiple jobs in the area where I worked, stress gets in. Stress inflames your body, on the biological level. Absorb yourself in a stressful environment and it is like pouring acid on your already scarred myelin. Everything is so tightly woven into and thru each other. One element out-of-whack, equals your disease progressing.

This wasn’t easy at first. We couldn’t pay our bills. But we learned to shift and reconfigure. We learned to simplify and not be so wasteful. We figured it out. It’s a process and it isn’t always easy. There were times when I had to ask my sister to buy us milk. Truly, these weren’t moments laden with unicorns and punctuated with rainbows. They were embarrassing moments, humbling moments, and painful moments. And then there was calm, and we were OK.

I don’t make the same money I used to, but I don’t waste half as much as I used to either. I rest. I pray. I play. I work. I read up on my illness. I laugh at my faults. I fuck up. And I move on. I am 15 pounds heavier (this is a good thing). I don’t really even walk with a limp anymore. Sometimes I forget until my father reminds me. I have my moments, but they are nothing compared to what they used to be.

For your MS-friendly, NY’s resolution, I challenge you to look at all the areas in your life-nutrition, fitness, stress, family, romance, debt, spirituality-and strive for balance. It may mean adding to your life in some areas, and drastically pulling back in others. But always start by adding. Don’t take anything away at first. Just add healthy elements. Start to juice, but keep the cookies. Add a walk here and there or a yoga class.

Just add healthy, in each area. At some point, and you will know when, you can begin to abstain from the negative.

Eat well, juice, but go have your glass of wine with a friend. You must rest amply, but go for a walk and look at the sky a few times a week, or sign up for a dance class. Swim and yoga are awesome for people with MS. Make time to budget (finances can stress you out and affects relationships in a negative way, which then stresses you out even more). Make time to read your Bible or the Torah or your Anarchist’s Cookbook. Wherever you find spiritual peace, you need to go there, daily.

It sounds like a lot, but just do what you can, when you can, with what you have. As you start to fill your life up with healthy habits, in a well-rounded way, the negative practices tend to fall away. It's not so much about depriving yourself; it's about adopting new, healthier ways.Your time and energy are finite, when you fill your life up with the positives, you tend to squeeze the negative out, without even realizing it.

Be gentle, go slow, and keep going forward, toward balance.

Happy New Year!

We begin again, at the beginning,with Multiple Sclerosis...

This blog began as a way to cope, to deal with Multiple Sclerosis. After my diagnosis, January 13, 2009,  six months after my son was born, I went into fight mode. This fight mode meant nutrition, which is awesome, yes?

It is, but not when you ignore the deeper layers. I ignored the grief. For a while there I ignored the diagnosis, the subsequent possibilities.

The spinal lesions threatened my mobility. Would I live my 30’s in a wheelchair? Would I ever know what it feels like to live as a paraplegic? Questions like this, at first didn’t get through to me, and then KABLAAMMM, they hit me all at once and sent me into a downward spiral.

So, I did what I hadn’t done in years, I began to write it out. Ugly Like Me was born. I chose this name because it was an attempt to make something beautiful, out of something very ugly.

If you don't have MS or a chronic illness, trust me, it is ugly. There are parts you don't hear about-like why a girl like me would be perscribed Flomax, which is essentially for a dude's prostrate.

Or, how my friend Shawn didn't want to live as a 'head in a bed' and decided to take his life, and die with dignity, rather than have someone feed him and wipe his ass. His mind was alive and ripe. He was  creative and intelligent. He was beautiful, and he was trapped inside a body that could not move.

And now, he is gone. MS is ugly.

But there are some very beautiful, valuable things that are born from this ugliness. 

So, the blog was called Ugly Like Me, it was up and running and before I knew what was happening, I had a second career as a freelance writer.

For the past three years I’ve been blogging about MS in 95 countries, community managing in 95 countries, except the United States. Living with MS, and writing about it almost every day for three years makes you a little…errr…less likely to want to write about it for fun.

BUT, something in me lately has fueled me to want to begin again (insert Taylor Swift song) on here; this is a blog about MS, for people with MS. But you will see, that sometimes it isn’t necessarily for only those who suffer with MS. They are universal themes that are as old as time, and they find their way into all of our lives, in different forms.

If I have learned anything from my diagnosis it is this-everyone has something. Mine was MS, some have cancer, some have kids with cancer. Others have emotional pain and mental sickness. Some have loneliness, a lost one, or an asshole partner. For some, their disability is their angle, always looking at life like it's a cup that is half empty-everyone has something.

MS made me feel old, and UGLY, in the beginning. My journey was about finding a beauty that surpassed anything physical. Everyone has an Ugly. Everyone is UGLY like me. Hence, I never feel isolated anymore, I’m never alone. And I never feel bad in the sense that I feel like I’m a victim. My sickness has connected me to humanity in ways I never thought possible.

It’s spiritual. It’s quiet. It’s humble. It’s up there, somewhere above the clouds and still out of the sky. It's somewhere else more important than here.  I wouldn’t give up this journey, even if I could. I wouldn’t hand it back for anything.

So, as the New Year begins, my resolution for this blog is to begin again, with sickness and healing. If this is the first time you’ve been here, welcome. If it’s the second or the 100^th, thank you.

I challenge you to think of something beautiful that was born from an ugly time or condition in your life. AND THEN, I challenge you to share it with us...God bless.

PS-Next up-The MS-Friendly New Year's Resolution!