Living Obliquely

Approximately 1400 people are diagnosed with Transverse Myelitis (TM) annually.
Similar to Multiple Sclerosis, it attacks your myelin, leading to painful and debilitating side effects.
About 33,000 Americans are currently disabled as a result of this rare neurological disorder.
Not one person with TM will ever know their prognosis.
I happen to be one of them.

I am a neurological soup. Since my TM diagnosis, I have developed encephalitis, MS, RSD/CRPS, Osteoporosis (I am 34, no 35, eek), and Chronic Anemia. sucks, but I still rock.


Me Me Me You Me Us Them Yinz Yous Y’all (Birth) Day/Month/Year Celebration Manifesto

I am a sick person. Not sick in the mind (maybe just a little), but sick sick; the kind of sick that makes the hospital a sterile home away from home. Sometimes it’s good to leave our comfort zones. It gives us enough of a challenge to keep life interesting.

I’d like to give you that special gift that keeps you on your toes (for those who can stand that is), or erect in your wheel chair, or upright in your bed. I’m about to take you on a journey – not to the rickety, run down land of scalpels and 4AM vitals – there’s so much more to the sicko life than that. This journey is for everyone.


It’s July, my adored birthday month (I know it's September, just go with it). The afternoon sun is so overbearing, my plants are cowering while I sit in front of my computer in my underwear. (When you are a professional sicko, you lose all modesty.) Today is July 28 (same thing...use your imagination!), the day before my birthday; the day before I enter my mid-30’s.

This will be my first birthday as a neuro-sicko-glamour-gimpette.

About a decade ago, I began celebrating my birthday week. Five years ago, I extended that to the entire month. This self-involved celebration only requires that I celebrate myself in some way each day. Not only is this practice a healthy alternative to aging anxiety, it takes the pressure off the “big day” for you, your friends, and your family.

Healthy or sick, even if we don’t recognize it, we are hard on ourselves – pushing our bodies and minds to their max: to be thin or get a raise or keep our job (in this economy, especially) or to be the best parent or the top student of the class or the prettiest woman or hottest guy on, e-harmony, or whatever mate-finder Web site you fancy.

Self-destructive behavior like this is prohibited during the birthday month.

In the birthday month, you celebrate your achievements (even if you’re a total loser, moron, or derelict by society’s standards) – the positivity of your existence, your family, your friends, your health, however many dollars are in your checking account, your best feature, your biggest adventure, the best kiss you ever had, the smartest decision you’ve ever made. You indulge in simple, available pleasures like a bubble bath, a home-cooked meal – just for yourself. You buy yourself a new pair of sexy lingerie or briefs that show off your package – even if you have to charge it. You treat yourself the way you want others to treat you.

Those petite celebrations are seeds for growth. Take them with you, water them, talk to them, and allow your next birthday month to include the happier, healthier, more thoughtful you.


Kim, a homecare therapist visits me weekly. For the most part, I am homebound. As I enter the 11th month of my battle with Transverse Myelitis, a rare and incurable neurological disorder, I tell Kim that I don’t feel like celebrating my birthday this year.

Ms. Fearless, moi, actually fears the entire month of July. Bereft of self-involved, self-indulgent, self-aggrandizing, self-sufficient, self-satisfying celebration, I am tired. I don’t want people to see me. I don’t want to celebrate my shit life. I don’t like my steroid face. Blah, blah, blah. Complain, bitch, moan.


Come on Melanie, get over yourself. You’re not the only person suffering, and you’re certainly not the sickest person on this planet.

Since September ‘08, I have been on steroids. I was tapering off of them in my birthday month – finally something to celebrate – no more Alvin and the Chipmunks cheeks, time to cook up those blowfish veil, pop pop goes the balloon face.

Soon, I would have cheekbones again! And maybe my skin would even be zit-free. Absolute glory! My ego is completely satiated.

Note: My face is still not zit-free, and I am still on steroids.


The next day, I relapsed - spending a 5-day so-called holiday weekend on the couch in excruciating pain from migraine to baby toe. Until the IV Steroids could be delivered – 1000mg of Solumedrol infused through my portacath for five days – I existed in a state of delirium with a fully loaded semi driving back and forth over my body 24/7.

I never knew such pain existed.

I have plenty of pain pills: oxycontin and oxycodone. These glorious, mute, little friends give me my quality of life. But the relapse was even stronger than the oxy twins could bear.


Poor, miserable me.

And if you’ve ever been on high-dose steroids, you know I’m not joking. Mood swings. Tears and fits. Outer body experiences. You are lost in the valleys of your newly remodeled fluid-retaining face, fingers, feet, ankles, and the inner tube around the section of your body that used to be referred to as a waist – a damn good trim and slim waist (self interjecting).

So here’s the big question:

What the F**K do I have to celebrate?

And a Poor Excuse for an Answer:

Eventually, my hapless grin takes over, and I find shattered pieces of happiness, a giggle, a sunrise so beautiful I want it to swallow me and take me to the land of light and color. Lies. All Lies.

And then there’s reality…Question:

How the hell does any celebration happen under these circumstances?


It doesn’t. So make it happen.

Stop whining, arrest your self-centered bitching, blow your nose, take a shower, brush your teeth, get off your ass and do something that matters. Do something that’s meaningful to you. Just do.


Whether it’s a birthday, the solstice, a pagan or religious holiday, the week of your period, or your anniversary, you have the power to turn that fleeting moment into a grand occasion. And stick to it damn it.

Considering my unexpected relapse, I extended my birthday month into August as well. However, after the first days of celebration, I was back in the hospital. This time I was imprisoned for almost a 3-week stay of myriad adventures. But that’s over and done with. Right now, I need to go and celebrate the rain.

1 comment:

  1. Hi Melanie, Your msg here had me nodding and reliving my own birthday this July. With nerve damage, chronic pain, severe alternating lymphedema that switches back and forth from leg to leg, diabetes, and severe asthma I wasn't in a celebrating mood.

    Despite this, my vascular specialist urged us to take a trip and visit our families. She said the change in scenery and being surrounded by loved ones might help. The wonderful birthday celebration at a Japanese restaurant in Knoxville made me laugh and smile and cured my moods. Getting together with my wife's sister and family at an Olive Garden and celebrating in Dayton was another nice touch. Getting my telescope out and us conquering the setup routine and having it go automatically to Jupiter was the icing on the cake.

    Yes, I can still think and learn to do complicated things. I had three weeks of relief from the severe swelling and then, when we headed back to Minneapolis, it started up again. Well, at least I know that being surrounded by love and people who care helps. It can actually work miracles. I get the sense you will never give up and will always manage to renew your spirits. That you will always have a rich inner life too despite appearances.

    Thanks for writing and helping me to understand that I'm not alone in my struggles and that others like you are shaping a good life around illness too. I've enjoyed reading your blog very much and hope to continue to read it and enjoy it. Please check out my birthday video at this link. I hope it makes you smile and laugh too. A friend from afar in Minnesota.


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If you're a Philly-region person with TM, please consider joining the Transverse Myelitis Philadelphia network (, a new social networking group that I started for people with TM so that we can meet and chat casually. It's only on Facebook for now, so, if you haven't already, join. It's easy.


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