Ugly Like Me...

This book about you...

So I’m walking in there today as a teacher. And I’m leaving as a teacher no more.

My students, who I have taught since they left 5^th grade, graduated 8^th grade yesterday. I get such pleasure out of watching them graduate; these little girls who buy big girl heels and struggle across the stage-awkward little robots in line waiting to grow up. Trying to push passed each other. It makes me giggle.

So yesterday was it and I went to my school and signed in and realized I couldn’t walk. People struggle to picture me and what I mean when I say this. Picture my grandparents who are almost 90; hunched over and holding on to things. If my energy levels are up I can really get some momentum going and swing them in front of me, but I had nothing. I was walking the perimeter of the halls and holding on.

 

My coworker Michelle, who covered my classes so I could get my infusions without losing pay, took me out to lunch two days ago. She almost LITERALLY took me to lunch. We were walking and it felt like the floor beneath me had been yanked. A sudden, violent jerk and I grabbed her (she isn’t taller than 5 ft with HIGH heels on). I scared her I’m sure. There wasn’t any jerking. It was all in my brain or spine or wherever that place is that goes awry when I flare up. She got me to Panera and sat me down and literally did all the work.

Michelle isn’t sick. She has no kids. She is younger than me with a husband who is in the armed services. There is no reason why she should get the places I come from. When I’m sick and tired and crying because the thought of going home to no husband and two kids alone makes me want to jump out a window, she gets it. She gave up her preps so I could be infused. She would text me and check on me. She would cover my classes and take my kids when my boss would have gotten mad. I will miss her, but really I will see her again.

So yesterday  I had a couple 7^th grade classes before I was to leave for the high school to see my 8^th graders off. I signed in, went back to my car and had to get honest with myself-I couldn’t go to the high school to watch them graduate. Working through the crowds, standing on line, the slanted floors-I couldn’t do it. And maybe that is best. I don’t want to announce to anyone-except for maybe 3 coworkers that I’m close with- that this is it. I hate goodbyes. When you aren’t able to physically show up for your students on graduation day—that is a sign that you shouldn’t be teaching anymore.

I went home and lay in bed and watched The King’s Speech before my infusion. My infusion, oh dear scott, my infusion saved me. I crawled in there and I walked out of there smiling and alive and awake. I feel a million times better. And that is how I want to end my teaching career.

I want to thank you guys for taking this journey with me. Many of you watched my sickness unfold on Facebook. In September you graciously gave my blog a peep to support me. You follow me around and you look after me. Thank you.

When you are sick one of the worst elements of coping is the isolation. It is isolating on so many levels. If you are physically immobile, you spend a lot of time bedridden or hospitalridden. And then there is this mental aloneness you go through at night-when the monsters come out. This type of alone allows the what if monsters in…what if I die…what if I’m paraplegic…what if I don’t get to watch them grow up…

And then there is the isolation of I am sick, they are not. It distinguishes you (in a bad way) from other people. Sometime I feel like there is me, and then there is everyone else who isn't sick. At least I did at first, but the more I wrote and lived it the more I realized there are very few people who don't have something.  Sharing with you has made me realize everyone is Ugly Like Me.

This is why I will never apologize for sharing. People will say (mostly jealous ex boyfriends)-wow, you share A LOT about your disease on here. Are you sure you should do that? Two things. First, fuck you. And second, Facebook and cyberspace is a beautiful support group for anyone who is sick. It stops that isolation (if you want it to), it allows friends to reach through darkness and pull you back when you might not otherwise find your way on your own. My grandfather who is just shy of 90 will attest to this. And me, just over 36, will attest to this.

So thank you guys for watching me get sick and supporting me. For reading my blog back in September and following it. For showing up at my door (Rainy) and taking my kids. For the dinners and excursions. For the prayers and the love. For giving me the courage to start this next chapter in my life. And for your stories.

I never knew what to write a book about-people say MS, but my story isn’t written yet. What if this has some icky ending? But in the process of writing this blog, I met so many women who are survivors. Cancer, ALS, strokes, Alzheimers, moms with sick children, awful ugly divorces,  mothers losing children.  You have no idea the stories I have heard as a result of this blog. My friend Erin wrote me yesterday and she was the first person to offer insight into WHAT I would write about…women, my friends and these stories…and their tales of survival.

So, if I make this book possible, it will be about you; from the dedication to the ending. And the occasional guy. I love you guys. The more I blog about me, the more I realize how little it has to do with me...

 

 

 

 

Collecting rain...my husband and other blessings

I’m hella bad with change. Years ago we lived in this raggedy old apartment (overpriced apartment) in Montclair and we traded it in for a beautiful, brand new apartment in Garwood. I cried the week before because change makes me itchy. I’m hyper sentimental and reflective. Even if it was a door to the crappiest chapter of my life, it is the death of some part of ME. I mourn. It is a curse.

The not so sad part to this story (me officially not teaching anymore) is that I am not just down and out for the count. There are other things I can do. I do have freelancing jobs. I have some form of income. I’m blessed because there are people out there who are sick and have no other means to get by. I do. I’m just a little scared…and itchy is all.

I have always had the support of my friends. Even strangers who bump into things I’ve written will reach out and support me in cyber space. My doctor totally supports me. Sick people who have it far worse than I do, pray for me. And then there is my husband. My husband, when it comes to me working and my sickness, is almost always very verbally quiet. Supportive, but quiet.

Spouses and caregivers are in a tricky gray area. They pay the price for loved ones being sick. My husband walks the line between respecting my body and what it needs and taking care of our family. It seems like everyone in my life is running around talking about my health and he is, at the loudest, a whisper of a hush. When people say, “Jamie you need to REST.” This translates to my husband, “Tony, work 18 hours in a row so Jamie can rest.” When people say, “J, dude it is time to stop teaching full time”. This translates to, “Tony figure out how to pay all the bills on 1/20th the income you guys brought in before.”

The moment I was diagnosed to a life of MS, my husband was sentenced to his own course of hardships. Carry her when she can’t walk. Carry the babies because well, they are babies, and mommy is tired. Oh, and figure out how to solve the economic recession while you are at it. Oh, and can you sprinkle in a little peace in the Middle East while you are at it? Great. Thanks. What else, what more, can one man carry?

I can wax philosophical all I want and fluff up our lives in the words I write about sickness and faith. But he is tied down to the logistics of chore lists and bills. That is a very real aspect to all of this; one that demands attention. And it isn’t as glorious as being the brave sick one. People keep sending me badges and patches to wear on my sleeve. He takes a very quiet backseat in our Fred Flinstone car. He is doing most of the leg work.

So he is kind of quiet because his head and his heart are at odds. What is best for my health isn’t always what is best for his head. That said, I called him at the U.S. Open about the poor review I had the other day. He said, “You know what Mama, you stuck it out for months longer than you should have. And you did it for the family and our finances. It is time we go in another direction. Don’t stress, it is a new chapter in our lives. You’ve done more than enough.” Hallelujah that is so awesome to hear!

I was never a writer. And then one day I was sick and barely able to move and I started this dumb blog. The next month I was writing for nj.com. The month after that I was freelancing as a blogger for MS communities in 95 countries throughout the world. My body has been saying no on so many levels, but the universe (I will call it God) as far as leaving teaching and just writing, is saying yes. And the final, cherry on all that…the sweetest of them all...is my husband’s blessing. So don't feel bad for me. I swear, I'm all good.

The icky said of all this-the side that represents sickness and disability-I’m NOT going to make eye contact with. I’m resting my gaze on the universe, and despite the Multiple Sclerosis NO, all the YESes that have aligned because of that one, measley NO. When I get really honest with myself I realize I had to get MS to write. I wasn't brave enough before. What would you sacrifice to live out a dream?

I just found this in the junk folder in my inbox.

 

Jamie- I just logged on to Facebook a little while ago and read about your difficult day. Have faith, my friend . . . clearer skies are on their way. There is a time to teach and a time to be taught . . . listen carefully and pay attention . . .you are a student in God's classroom and he's showing you how to collect the rain. xoxo I'm here . . . Love, Stacie Miller

Today I Gave My Notice, But You Haven't Lost Me Yet

 

Proverbs 3:23-26 Then shalt thou walk in thy way safely, and thy foot shall not stumble. When thou liest down, thou shalt not be afraid: yea, thou shalt lie down, and thy sleep shall be sweet. Be not afraid of sudden fear, neither of the desolation of the wicked, when it cometh.

Today was a very emotional day for me. Maybe it is because it is over three weeks that my husband has been gone. Seeing him this weekend was bittersweet. I (maybe) saw him for a total of 15 minutes. But the room smelled like him and, even though I was alone, that smell was sweet enough. Maybe it is because I feel like crap, a few days away from my infusion. Maybe it is the fact that I can’t see out of my left eye (optic neuritis). OR (And I bet it is this one), maybe it is because I officially announced that I won’t be returning to teach in the fall.

It was my end of the year review (PIP) today and my boss opened with, “You realize this isn’t going to be a good one”. He explained I was out 20 days. I wasn’t ‘energetic’ like I usually am. I listened to him, and then I cried.

In my defense I need to say this – I’m a REALLY, really good teacher. My students wake me up. I’m alive when I’m with them. They piss me off, they drain my love. I love my students. It doesn’t end here-it flows over into their really difficult outside-of-school lives. I take them shopping for clothes because they can’t afford them and I WANT them to start high school with confidence. I wash their dirty white (used to be) hoodies because their parents aren’t around (we will leave at that). I care, and I love, and I fuck up, and I learn, and reevaluate when I can’t reach them, and I build bridges. Before my sickness I was a super duper teacher. After my sickness, I did the best I could.

One of the hardest, saddest things of being sick is that my mind is reeling. It is spinning and planning and alive. But my body quits on me. I have all these dreams and ideas that my body is struggling to live up to. I’m not proud that I was out sick for 20 days, but I’ll say this—I would gladly be here instead of being home, immobile and out-of-order. You take this sickness from me and I will be here everyday, 12 hours a day. It would be my greatest joy. And I would do it for free.

 So today I told my boss that this Friday is it. I won’t be back to teach in the fall. He was kind and patient and concerned. For the record, my boss isn’t an asshole. He is bad with words. Sometimes he struggles with emotions and understanding because he's always on the data side of things; budgets and stuff. But I’ve seen him reach out to kids and their families. Those kids that are really hard to love; the ones you feed and then they key your car. Despite him not fully understanding, I will miss him. And I will miss this room- roaches and all. I will miss my students. I will miss teaching. I’m pretty sure this is why I’ve been crying all day.

Stress and pressure and fear are super bad for your health. It is probably the most underrated factor in healing. People dismiss it. They will focus on medicine and doctors. If they are really into it they might extend that and focus on nutrition. But most underestimate the power of stress on the body. I’ve learned this firsthand, it is something that can’t be ignored. And I really think it is the integral element that is holding me back. Stress causes inflammation. My autoimmune disease (like most) means my body is constantly trying to ward off inflammation, especially in my spine.

I went off the MS Diet too because I was down to 105 lbs. I know how obnoxious this sounds, I used to wish I could weigh that much. But, at 5 ‘ 6” and 36 years of age, it isn’t attractive. You look SICK, and you look OLD. So I’ve been downing anything to try to get my weight up. I believe I’m up 9 lbs which is much better.

There are two kinds of MS. Relapse-Remitting and Progressive. I’m in a tricky limbo kind of area between the two. I was diagnosed with Relapse-Remitting, which is far better than the progressive in terms of prognosis. BUT, my lesions are all over my spine. Most people in this category only have brain lesions. There is room in your brain for lesions. But your spine is about as wide as a pen. One tiny lesion can cut off an entire quadrant of your body, rendering it immobile. My spine is riddled with lesions.

 So it is time; time for me to focus and get this out of me. I don’t believe I am a hopeless case. I do believe I can heal this nutritionally and holistically. It is rare for someone with Relapse-Remitting to be on Tysabri infusions, but because of my spine we needed it to buy me more time. The fear of a wheelchair, and my neuro, made me cave. I figured if I couple the infusions with the MS Diet, I can heal. The holistic way takes time, time I didn’t have.

So when I want to cry about this change, and not teaching, I have to center my thoughts on this. It isn’t a choice. It isn't a choice. It is time to heal. I can say this-I can be happy and be in a wheelchair. It isn’t the death sentence I once thought. If it meant I could watch my kids grow up then so be it. But holy fuck I am not just going to let it happen. I need to try.

I was reading a book a friend lent me called I Don’t Do Crazy Anymore. It was written by a man who lost his granddaughter to cancer at 5 years-old. The entire book is about why God is still good, despite these things. How His NO is bigger than our YES at certain moments in our lives; and WHY is to be understood later. Dr. Joel Hunter (Pastor as well) speaks of fear and how (if you believe in the Bible), the opposite of love isn’t hate—it is fear.

Jesus speaks about fear in the Bible. He was very clear, Be Not Afraid (Matthew 14). Lay down your fear and He will carry you. Many of you don’t know my entire story, but I have to say-I’ve been through worse than MS, and God has carried me. I need to remember that deep down, in the inner inners of all my innards…God has never let me down. Maybe some people have; but never Him.

 I will go forward and let go of this chapter in my life and let God.

 

A naked woman at 3 am isn't my idea of uninterrupted sleep...

So I drove down to Bethesda after 17 days of my husband being away for the U.S. Open. My plan was to sleep.

When I came back to my room last night I was (ummm) peeing when I saw the closet door was open. It wasn’t open when I left. Anyone who knows  me knows I have watched far too many Forensic Files episodes and refuse to sleep in a hotel room alone.

Ask Kristin Cifelli, I was meeting her at a gig of hers in Kingston, NY and was staying over with her. I waited in a lobby for like 3 hours for her to arrive from Boston—I wouldn’t even sit in our room in daylight alone.

I think my worst nightmare is being naked when an intruder comes or a fire alarm sounds. So here I am, peeing, pants down and my heart attack begins. I’m convinced someone is in the room. So I gently did a side gallop, to the door, pants not even up before I reached the door, and  took the heck  off. I  layed on a bench outside the hotel, waiting for my husband to rescue me.

Eventually he responded to my text and told me they dropped off the dry cleaning : “lol. It is safe baby. They just dropped off my dry cleaning. Go upstairs and rest.” Was the text.  By this point, lots of drunk people were around me and attempting to conjugate Spanish verbs. It isn’t funny at 10 pm when you are tired. They were all drinking after a long day the US Open. So finally I was tired enough to risk it and go back upstairs.  I fell asleep watching Locked Up.

Asleep UNTIL there was a loud banging on my door at 3 am. A woman was saying, “Let me in. Let me in honey.” It wasn’t a frantic yell. It was more flirtatious. Looking through the peep hole, she was naked: Asian with a long black, poker straight pony tail.

So I called security. Maybe I fell asleep at 4:15’ish. T fell back asleep with 30 seconds of the episode (they say men don’t have consciences and that is why they fall asleep so quickly).  My night of uninterrupted, no babies, pure sleep was replaced by interrupted naked woman sleep.

But before all this I had a beautiful day here at the hotel. There was a storm and they had to hold off on the course for a while. In the hotel next to the course, I’m on the top floor.  I sat next to my huge window and watched the sky light up, eating bread pudding.  Laptop and desk close.  It was quite romantic. Being alone, with bread pudding and a birds’ eye view of a storm  is my idea of the perfect evening alone.

I met my friend Siobhan for dinner in Bethesda after the storm. We ate tapas at Jaleo and cupcakes from  a place that wasn't D.C. Cupcakes, but just as expensive and walked around at dusk. It was beautiful. And my legs worked fine. Bethesda is charming, with quaint shops everywhere and nooks and allies; lights hanging from wires over your head at dusk and cobblestones.  Siobhan and I go way back and the thing with me and her is that I don’t feel like I expend any energy in her presence. Some people exhaust me. They suck and require everything out of every pore. With her, it is effortless and low key. The conversations just lead us.

I've been thinking about how things come full circle. Friends that I had in high school that I lost touch with years ago are the people that hold me up now. The nuns in high school taught me many things; many things that I let go of when I ran like a bat out of hell to college in NYC and set off on a decade long binge of mucking up.  It is funny because when I was at the end of that rope of a lifestyle, everything (not everything) they instilled in me years ago, came back up to the surface. I am those things. I am, in many ways, that woman that they were trying to form.  Like a destiny. And like those values came back, so did my friends from that time. These friendships were destined. I couldn’t run away from these old friendships anymore than I could shake the values that the nuns, so long ago, instilled in me.

And so I’m tired, but grateful. Meeting Siobhan again today for a day at the U.S. Open.  I always prefer to watch from the hotel on a big screen in the lobby and avoid the big crowds and the heat, but things aren’t so peaceful here between hotel intruders (even if a figment of my imagination) and naked women banging down my door at 3 am.

 My infusion is next Thursday, so quite honestly, I may have felt tired regardless. But it is a lot more interesting to blame my fatigue on a naked chick.

 

I'm kind of an a~hole when I'm sick

I’m dragging arse today. I feel like total crap. It is one week before my next infusion, so really, this is to be expected. It’s like the Tysabri wears off. The difference between this month and the other months is that I usually have a husband to make the blow a little softer.

When I feel like I’m walking on an escalator and falling backwards, when I feel like I have Mario Batali on my back (big- boned chef with pony tail and orange crocs), when my back hurts...I usually can lay the heck down. Being alone with the kids, and my jobs, and a disease (ummm what is the word) sucks? No, no. SUCKS! Right now my breathing is really labored. I think this is the MS Hug, sometimes called the MS Girdle. It is when the tiny muscles around your ribs spasm and breathing feels really hard, like your gasping for air with very little pay off- feels like not much oxygen is getting in to your lungs. It is easy to panic and totally freak, which only makes it worse.  No freaking allowed!

I think I slept for maybe 3-4 hrs last night. Usually, the best cushion for the Tysabri wearing off is sleep and rest. It is a luxury I haven’t really been afforded this month with Tony away at the U.S. Open. What do single moms with chronic illnesses do? My biggest struggle right now is this--I'm such an asshole when I don't feel well? My kids see me after I've already been working for 12 hours. So, they keep getting the worst parts of me-that is is so inherently, deep down to the core, backwards. The last few days this is what I've been working on the most.

I keep barking at my 6 year-old because I feel like no m atter what I do, it isn't good enough and she needs more. If I rent her favorite movie and I try to play it, she will say she wants her 5 best friends to come over to watch and surf and turf served on the pull-out bed (she wants to lay down while watching) and a cashmere throw. Tired and barely hanging on me, keeps barking or acting like Eeeyore in front of her. I take it personally - Why can't she try to help me when I'm alone and sick? I get resentful toward a 6 year-old? That is incredibly wrong on my part.

Patience and kindness is what I'm striving for--and I think I did a lot better last night- dear God it is hard when I feel so icky. Maybe I need a shrink?

The good news is that there is something so intimate and sweet when it is just me and my kids roughing it. Them crawling into bed with me; us tangled in each other watching Nick Jr. is such an awesome feeling at night, kicks to the head and all. I must have said, “I love you, ” and kissed their sweaty foreheads at least 10 times (per child) last night as they slept.

Despite Junes being so hard, the bond between my children is only strengthened in months like these, making the difficulty incredibly worth it. Also, I can't get Brooks and Leslie Douglass out of my brain. Thinking of them and their struggles reminds me I have nothing to WAAAH about and everything to be grateful for.

Did you see the letter the Heaven’s Rain folks sent me? Check it out and like their fan page on Facebook. And if you hear me whining today, kick me…or poke me on Facebook to remind me to be grateful for all that is good.

My letter to Heaven's Rain...and their response

I never expected a response or an interview, but I felt compelled to write Brooks Douglass after watching that interview...this was my email to his peeps:

June 14, 2011

Hello there...I'm not sure if this email will find Brooks, but I will write as if it will...
 
I was in a hotel in Maryland the other day and the TV was on in the background...an interview with Brooks came on and I found myself so close to the monitor I could smell it...and crying.
 
I am many things...a mother and wife, a writer, a Multiple Sclerosis survivor...a teacher...and finally, but not last, a Christian. My sickness has brought me closer to God than ever before. In my deepest moments (facing the reality of living in a wheelchair at 36, after being a long distance runner) my faith has been tested. My sickness...and my darkness, for me, has only proven how vast God's light...and reach is. My walk with God has been strengthened.
 
I don't know how many people have been tested like Brooks and Leslie and his beautiful parents, but to watch Jesus prevail..and forgiveness shine...is a miracle. I sobbed as I watched this interview (on Huckabee) and I was at the US Open...golf was so pale that day to what I witnessed in that interview.
 
As I writer, I would love to interview Brooks or Leslie or someone about this movie...and the theme of forgiveness...I would also love to write about for my personal blog uglylikeme.typepad.com. I was asked to start a blog for my church and I can't think of a better topic than this movie...It isn't my wish to promote your movie--it has legs of its own based on the power of the content, but rather you have a message the world needs to hear...
 
My heart and my prayers and my love is with you all...
 
Jamie Tripp Utitus
 
http://uglylikeme.typepad.com/ (Personal Blog)
 
http://search.nj.com/Jamie+Tripp+Utitus (nj.com)

 

A day later, in bed with my son, trying to wrestle a shovel out of his arms an email came through from Brooks' peeps...or peep (singular):

June 15, 2011

Dear Jamie,

WOW. Thank you so much for your wonderful email! I forwarded it along to Brooks and the rest of the team, and we also checked out the blog you wrote about Brooks and the DVD.

To show our thanks we would like to send you a complimentary copy of the DVD. Please send us your mailing address and we will get your copy of the Heaven's Rain DVD out to you around the end of next week.

Thank you again for sharing your experience with the story of Heaven's Rain and for helping to spread the word to your family, friends, and fans :)

With blessings and gratitude,

Britt Wickenkamp

Community Relations Coordinator
Heaven's Rain Productions

[email protected]

Umm...how cool is that? An automated reply pops up after you send an email to their contact email. It is a gentle reminder they are getting thousands of emails and a reply may not be possible. So I never expected a reply...or a free DVD...beautiful way to end the day.

If you think Brooks and Leslie are remarkable, do me a favor and click here to LOVE Heaven's Rain on Facebook. If I didn't think the world of Heaven's Rain before, their reply just sealed the deal. Super duper sweet. Nite nite my friends. I'm starting to talk to Elvis, first sign of sleep deprivation.

Heaven's Rain, could you forgive a man who murdered your parents and raped your sister?

I was at the US Open with kids in tow. At some point amidst the chaos of my children being reunited with their dad and the fun of the hotel,  I found myself alone in the room at night for a good hour and half. The TV was blaring in the background and I was scrambling to clean the room that we managed to trash in such a short time. Without even realizing it, the TV was pulling me in. This man, and his story were stopping me in my tracks and pulling me in, demanding my attention.

Huckabee (is that name of the show?) was on and a man by the name of Brooks Douglass was being interviewed. Brooks is a victim’s rights activist, a lawyer, a senator, but his story started with a tragedy that happened when he was just 16 years-old in Okalahoma City where he was living with his 12 year-old sister Leslie and their parents. Their father, Richard, was a leader in the Baptist Church. Their mother, Marilyn, was a woman of faith and talent, turning down a scholarship to the renowned Juilliard School to join Richard in the Brazilian mission field.

When they returned from Brazil, Richard became the pastor of a large church in Oklahoma City. In October of 1979, the family allowed a man into their home; a man they believed was in need of help. The man, in actuality, was a drug addict and drifter  (Glen Ake) on a bender. Once they allowed Ake into the home, a second man burst in (Steven Hatch) with a shotgun. Brooks and his family were hog tied in the kitchen. Leslie, just 12 years-old, was taken to a nearby bedroom where she was raped repeatedly with her family listening.  After, she was brought back to the kitchen and hog tied with her family. All were shot in the head. The parents were shot twice.

After Ake and Hatch left,  Brooks managed to free an arm and crawled to his dad. He was crying to his father, “I love you Dad. I love you Dad,” as he tried to untie him. He told Brooks to not worry about him and to help his mother. Listening to his father, a frantic Brooks crawled to his mother's side. He reported that he saw the life slip from her eyes while he was trying to untie her. He cried out to his father, “Mom’s dead.” Brooks and Leslie got their arms and legs free and ran to get help, bleeding profusely. When they got back with help, both their parents were dead. What GOT me the most was when I read that Brooks noticed where his father was when they came back. Richard, despite being tied up and shot twice in the head, managed to wiggle all the way over to his wife. He died with his head on her shoulder. I was bawling as I was reading this.

Brooks has spent the years since then a tortured soul. He was so outraged that he was asked to pay the $500 for Leslie's rape kit. When the family car was towed for evidence, Brooks and his family had to pay to get it out of impound. Brooks and Leslie were forced to sell their family home and possessions to pay medical bills. Brooks struggled through high school and college, repeatedly failing out, drinking heavily, and given to bouts of rage. Ummm, who wouldn't? I can't imagine not allowing my life to spin into circles of anger and despair after all of this.

But something remarkable happens. Douglass turns his life around and goes to law school. He wanted to better be able to understand the legal system that he claims was, "stepping over the bodies of the victims to read the murderers their rights." He becomes the youngest Congressman in Oklahoma City history. He fights for the rights of victims. But then something even bigger than all of this happens. Something quite unintentional. In 1995, Brooks was on a legislative tour of a state prison, when he caught a glimpse of Ake in the prison yard. He requested a chance to talk to the man who had destroyed his family.

Douglass never intended on forgiving this man. He never planned on speaking to him either. All of a sudden he found himself just one window pane away from  Ake. Talking. Ake was crying. Brooks was crying. Ake was apologizing. He told Brooks he had become a Christian. Before Brooks left, he muttered the words he never thought he would, “I forgive you.”

Brooks explains that the act of forgiveness was divinely appointed; how he alone was not capable of this even though his parents were devout Christians. The heart of their faith was forgiveness. I would imagine this tortured Brooks over the years. Ironically,just the Sunday before the tragedy Richard Douglass preached on forgiveness. In a dramatization of that moment in the film, Heaven's Rain, Brooks himself, playing his father, quotes the book of Matthew: "He sends the rain on the just and the unjust," and William Shakespeare: "The quality of mercy is not strained. It droppeth as the gentle rain from heaven."

Brooks co-wrote  Heaven's Rain, the story of that tragic day to the dramatic events that unfolded during his conversation with Ake. What does this movie have to do with MS you ask? Well, this blog isn't entirely about MS.  It's about struggling with life's uglies. Everyone has something. But after listening to Brooks and hearing his story, I realize two things: 1. My, oh my, how small my somethings are compared to what some are dealing with , and 2. Faith shines even in the ugliest of places. Darkness could have easily prevailed in this tragedy, but Brooks (with God) let the light shine in. Amen.

When I reflect on my life, forgiveness has always been a theme. Whether it was forgiving myself for the atrocities I've committed; sometimes they were directed only at me. Others bestowing forgiveness on me for the 'somethings' I've committed against them. Forgiveness, in some cases, was nothing short of a miracle; something I thought would never be gotten or given. These moments of forgiveness had to be divinely appointed because lil ole me was too small compared to something so big. Even so, all of these moments of mine were so pale compared to the journey Brooks had to take to understand the depths of pain and forgiveness and FAITH. This story took my breath away. Days later, after writing this, I can't say I've fully gotten it back.

MS Symptoms...Ugly Like Me?

Today I received two emails from people inquiring about MS symptoms for their friends. In the past week I've gotten about a handful. So I thought I would write this post for friends and friends of friends who were struggling and presenting with strange symptoms and searching for answers.

There was a study published within last two weeks that suggests chronic fatigue is the first symptom most MS’ers present with. For me, I have to say I’ve always been tired. I just kind of figured there were two kinds of people in this world, those who darted out of the birth canal like they had an invisible speed racer IV-pole filled with an endless supply of coffee. And then there were those of us who were more like overloaded mules, trying to navigate the descent to the bottom of the Grand Canyon with fat travelers (carrying large cameras) on our backs in 200 degree weather.I've always been a mule.

But in the 2 years before I had my son, I was overwhelmingly tired. I went for a physical and the doctor said I was fat. She wrote a prescription for weight watchers and sent me on my way. Maybe I was a little overweight, but dag that was harsh. Since I was so insanely tired, all the time, I was desperate and willing to do what she said. I focused on eating well and exercising. I lost weight. Maybe it made a little difference?

So for me,fatigue was the first noticeable symptom. The second was probably balance or gait issues. I kept falling during my runs. My right leg would drag (drop foot) and I would fall. I broke my toe. I cut my hands open so badly after one fall that I had to go to ER for shots. I kept writing it off as poor core strength. I thought since I had no stomach strength that perhaps more crunches would help.

Soon enough I was preggers and kind of forgot about my symptoms. I just focused on being preggers and having my son. After he was born it was time to get out there again. I would get out there, and fall. This time not at the end of 12’ish miles; within the first mile I would bite it. I started doing crunches and training at obscene times so that if I fell, no one would see. Have you ever fallen off a treadmill with people watching? Highly embarrassing.

 My fingers were tingly and numb (Paraesthesia). Then my toes. Then it spread to my shoulders. First  my Dr. said I had carpal tunnel. He then changed that diagnosis to tarsal tunnel when my right foot went numb and was dragging. This diagnosis was understandable since I do so much typing with my toes and all. 

I was also experiencing brain fog. The clinical term they use in the books to describe this is  cognitive dysfunction. With this, I couldn’t recall things. I still struggle with this daily. People probably think I’m a total ditz, but things almost literally fall out of my head. Passwords. Names I knew forever and just said five minutes ago. What I wore the day before. But the thing with the brain fog that was most prevalent, was word recall. I couldn’t recall words. Fifty times a day I will be describing to Zoe, “You know, that thingy…that we keep on that thingy…in the thingy…”

 Optic Neuritis was another one of the symptoms, but I thought I was just getting older. My eyes were very blurry and I couldn’t see certain colors. But again, I didn’t realize this until after my diagnosis. For some people with MS, their FIRST symptom is going blind. I can’t imagine. If there is any silver lining to this it is this-it is almost always TEMPORARY! Typically sight lost as a result of optic neuritis comes back. 

Also I was getting migraines that lasted 3 days at a time. For someone who never had a headaches, to all of a sudden start getting migraines for 3 days at a time was tough.

 So for me, FATIGUE, numbness, drop foot, poor balance, a splash of optic neuritis, and brain fog were the first MS symptoms to rise to the top. I realize that sounds like a book, but there are tons more that can present as a result of Multiple Sclerosis. As the disease progresses I’ve added to this list.

If you are searching for answers and bumping into this blog in the process, I pray you find answers and that you find them quickly. I know for many, myself included, getting a correct diagnosis is the hardest part. When you don’t feel well and you are dragging arse from doctor to doctor and getting nowhere, it is so disheartening. Then maddening. Then disheartening again.

 If this is where you are at, my heart is with you. I totally get where you are at, and what you are going through. You have to push through because in the words of GI Joe, knowing is half the battle.  Keep pushing and schedule appointments for earlier in the day if at all possible so that you will have the most energy to DEAL.

In the words of Yo Gabba Gabba... keep trying, keep trying...don't give up, never give up...

Lance Armstrong was on to something...

Oh dear. I was asked to speak at the No Boundaries Running Program sponsored by Fleet Feet and New Balance. It was a group of 40 some odd (the number, not the people)people training for a 5k.

I have to admit that when I received the email a few months ago my first reaction was, “Umm, why?” I couldn’t fathom what my friend had been sniffing! I haven’t been running much these days. And the few marathons I do have under my belt were tucked under a whole different belt—one that I wore in my 20’s, and one that fit me a whole lot better before my Multiple Sclerosis. Why the heck would they ask me to speak?

That sums up what I responded in my email to her. She responded that she felt I had something inspirational to share, my heart was filled with flattery and I jumped at the chance. “Of course. Thank you for the invitation!” It wasn’t until later when I got in the car on a 5 hour’ish drive to Boston with my husband that the panic set in. Holy shmolies I have to speak in front of these people.

The more I thought about it the more the WHAT of my speech unfolded. Running has always been woven into the fabric of my life—all the layers. From professional to romantic, and even into the layer that holds my MS. When I wanted to train for a marathon after running ummm…nothing…my whole life I bumped into Fleet Feet. When my career was dead end and I got up and walked out and went to work at Fleet Feet. When my husband walked in one day and chatted me up about how to start training for a marathon. When we had a Fleet Feet wedding and Fleet Feet Babies. When my husband ran the Boston Marathon to raise money and awareness for the MS Society. Running has permeated every area of my life. And much like Lance Armstrong believed it wasn’t about the bike, running, for me, had little to do with the finish line of the races I completed. It is so much bigger than that.

What I worried about was this—What the heckers kind of message do you give to almost 40 runners who most likely don’t have Multiple Sclerosis? How do I share my story without completing depressing them and sending them on their training run in tears? Yikes. It is a fine line between inspiring them and completing depressing them. This was what I have wrestled with these last few months. And crazily enough, it wasn’t that hard to find common ground, some sort of bridge between these people’s lives and mine. MS or not. Running or not.

The thing is, long before I had MS, long before I ever set foot on pavement with the intention of running a marathon, I had something. I had no career. Then I had a stressful career. I had crazy relationships. Then I had a beautiful relationship that led to crazy children. And then, well, I was sick. There was always something. Chances were that none of these people had MS, but chances were that all of them still had something.

Ever since I could remember there was something in my way, daring me to TRY to run. “We dare you to try to commit to something healthy.” Sometimes the circumstances of my life would tease me to try. Sometimes it was just me and my inner depressed fat girl that would taunt me and stick her tongue out at me. And sometimes, it was others. Whatever the case, there was always something. Acknowledging these ‘somethings’ is the first step in taking the power out of them; pushing through hushes them to a corner. Pushing through consistently, over time, kills them.

I always knew that my body sucked at night. I am useless after 3 pm. So I would set my alarm and train early in the morning before my body started that downward slope of sucking. It is quite similar to my body now. I know if I have any shot of working out, it has to be early in the am—when my body is at its best and the heat (which is especially crippling to anyone with Multiple Sclerosis) is at bay.

On a bad day I can’t walk. On an average to awesome day I CAN run with some careful planning.  I ran three times in the morning last week, right up to my infusion day when I am usually at my worst. I went slow. I stopped when I had to and regrouped and started with a slight mosey of a run again when my body gave me the go. Good enough.

If you have something, whatever it is, take the power away from its hold over you and your health. You CAN CAN CAN if I CAN CAN CAN. And if you think you can’t, call me. Inbox me. Meet up with me. Join a running/walking community. Surround yourself with people who inspire you so that their YES YOU CAN is louder than your NO I CAN'T. What I have learned in my life, and throughout my running years, is that there is strength in numbers. The community you surround yourself with is louder than any 'something' you might have.

It was World MS Day when I gave that speech. It is National Running Day as I post this. Once again, running and my personal life collide. Lance Armstrong was right...it isn't about the bike. This isn't about the race. It is so much bigger than that.