Ugly Like Me...

"Umm...is she depressed?" *insert Valley Girl accent, whisper*

Worst three days of my life. I'm pretty sure we all say that when we get through a new painful phase. Pretty sure I have said that before lol. Every time is "the worst time ever" lol.  But I upped. Shower. Put on a shirt and pants and tended to my husband's cyclo-cross injuries.

Training means coming home with all kinds of protruding things (bones perhaps) and road rash and blood and MUD. All of that with hours of relentless training. His dedication is sexy almost. So I lie with him now and it is my turn to get him through. The bruised bone worries me. It looks huge. Bigger than pictures can convey.

Our marriage has always survived that way. We take turns at the helm. Our own peloton. Our kids wear the yellow jerseys. We've done well and feel blessed when it is our turn. Always abiding by the unwritten rules of respect.

His body is so strong. I'm so tiny next to me. He can lift me like he lifts AJ. He's diesel and dedicated and he takes the bumps and bruises as par for the course. As do I with the MS. I'm just a smidge different. I cry sometimes lol. Totally AUTHENTIC and natural and don't let people act like because you are HONEST you are crazy or high.

To be your authentic self, you must feel the pay and feel the gratitude when it goes. Nothing ever got better by looking away.

I'm not like that with social justice causes, and I not like that with my disease. My goal inthis life is to be my authentic self, through the good and bad. The pain and the bliss. I pray constantly that tools such as faith and love will always be what I relay on to get through. To find my authentic self, is to find peace.

It's typically the uncomfies that are not used to painting such pictures - only feigning perfect marriages and job choices (I always wanted to do this...? You sure about that?) not being able to pay the mortgage, being happy all the time, understanding everything. You can't possibly and you shouldn't have the impossible job of perfection and purity. You never made a mistake? You've never lied or gossiped, lusted or cheated? I can't imagine how it must feel to always feel the pressure to pretend. My heart is with you. Truly. This is not to chastise or criticize. It is something we were born being groomed into pretending. I was a bad ass at birth.

Just think twice before you are quick to point at me and label me because of how I handle bouts of what feels like insurmountable pain. For those of you going through - it is finite. Hold on. THAT is why I share.

 There's a huge difference between insisting on becoming your authentic self during this life and being depressed. I've been Through extreme bouts of depression. Therapists. I know the signals. My support system knows. My husband laughed at the "depression" message this morning.  Just remember, if I release one post, about one angle - it is just that. One very small angle that I feel is important for someone with chronic illness, degenerative illness.Before that nuclear level of whatever took over - it was Pier and Jen and PA and horses and photography and swimming and French dessert. That was ME right before the pain took over. I'm just not in that place. I find light and beauty everywhere and I want to soak it in.  I am fully a believer in that theory about dying, as we lived. So I shall love and soak it up. But when the pain comes, I must show you how I handled it.

What if my kids read this and inherit this illness? This is meant to be a "how to" not a depressing essay. And babies, it's okay. Feel and get up and go again. You will.

This is gonna sound harsh, but I will say it. People don't want to get this at a young age - they want to pretend they are immortal. This is the truth - it is really hard to die. I never thought I'd have to go here, but it's even harder to know there's a 50/50 I will be stuck in my body WITH the pain. Not even allowed to pass onto my Father. It's the hardest thing to think about. 

I will not ignore that reality. Some of us go easy. Some of us, we die hard. We have to "wriggle out of this body to get to the next life" as one hospice nurse explained. Typically younger people struggle with that.

AND, more importantly, we tend to die as we live. Remember that. Only in the the last week, you are you times ten! If you lived funny, you die funny. If you lived manipulatively, you will manipulate until your last breath. So I focus on the beauty, I focus on the love.I try my hardest to walk with Christ and give.

I love so hard and yet easily. This will be magnified in my last hours. I like this thought. It brings me peace. Scares my husband to bits lol. But it's the truth. AND, I'm being authentic.

I don't live there, in those scary thoughts about last words etc. PS - I don't want an open casket.  I'm afraid someone from the Golden Girls set will do my make-up. And yet part of me if like, "Meh, surprise me. Let people get real close." Anyone who knows me knows how hard it is to let anyone close to my face. I look down and get itchy and squirm.

Except for Tony. He's earned every privilege to look at me close up, lights on, no make up. He truly loves something that was planted in me long before birth that has little to do with my physical attributes. I like that. That's a man. Once a friend compared me a colleagues and said, "Wow, you've aged so much better in the last ten years." For the first time, I felt like I didn't know my friend. He felt like he was less than a man to me and eww. But Tony, always ... this strength that no one can outdo.

I digress - authentic and depression.

Very big difference my friends. So I beg you to feel, to acknowledge and cope in productive ways. Reach out. Paint. I don't care if you've never painted a day in your life. Write and be honest. People may make fun (that's on them, I could give a fuck)...BUT you, your courage to share at the expensive of being ridiculed may save a life. That's pretty cool.

That's why I am here.

If I turned away from Jesus on the Cross I would never have held or known my faith in the deep way I strive to, everyday and carry that into how I treat humanity. I will not ignore sadness and pain. Because of looking at him, I look at my neighbors everywhere, of all religions and fight for their rights. I know how to proceed with the sadness after I look. I'm no weenie. I'm stronger than you think. .

So we are still going. I didn't wear a bra today and I'm pretty sure I didn't button the back of my shirt. But I made my bed, like I told my dad I would always do. He insists it will help for a positive outlook. Keep me positive. Once I was in the hospital, and all I had was that bed. Making my bed everyday got me through. It sounds crazy, but try it if that is where you are at in the course of your life. Speak. Don't isolate and if you cannot manage life, cannot get out of bed and try - call for help. You can text or call here if you feel like you can't hold on any longer.

Help works. Therapy works. Trust me. And it's okay to struggle with depression. I have. Reports say that from 50% to as high as 80% of people living with chronic illness live with some type of depression; whether it be clinical, organic, or situational. No shame my loves. No shame.

So many responses to my post from yesterday about me being depressed, but I assure you, I was playing basketball before this started. The days before, swimming in the country with friends and out kids, eating French desserts. This is not depression. It's a battle, a bout, of pain to push through. Writing that was not a plea for help to send me away,  it's me being authentic. It is taking something ugly and making it beautiful. That is a lovely way to cope.

But you call it what you want. It is none of my business. My only prayer is that as human beings you please, take the time to know the difference between living an authentic life, one that must acknowledge pain as much as it does joy, and being in a state of clinical depression.

I pray someday you will be authentically you. It's okay to struggle when the pain hits. But know...I got up today. I didn't put a bra on, but I showered and dressed and took care of someone else. I didn't/don't live in my pain as it begins to grow again. That's not depression my friends. If I need to gnash my teeth and yell FUCK at some point, I will. So what? It helps. A little lol.

So, today I love and take care of my biggest boy. There are no words for the joy I get in loving him and taking care of him - even when he is muddy and a bloody mess. I take joy in knowing that he can pursue his physical joy and I'm in, all the way, with him. So I dress his wounds and ice and comfort, as he does me every time the pain dials up that 1-10 chart they give you when they ask where it falls on the pain chart :) Just...I need you to know it's okay to feel pain. Necessary. It just can't make your life unmanageable. Are you showering? Taking care of chores? Things like this you must be honest about as well. How long have you felt sad or indifferent?

But I mean if it's three days of hell and pain and you;re expressing and coping, then cyber chest bumps to you my friends. God bless you my friend and I pray you are an authentic moe foe with an indomitable spirit and that you still feel and don't apologize for it. There's no need. God bless you always and I pray you have something like Tony to walk through this with.

Wanna see his legs? Here's the one, after being cleaned. Strong as heck. His training is evident. It makes me proud.

 

 

 

 

 

 

 

 

 

 

 

 

But the the other came home like this. Blessed to be his caretaker <3

 

Twenty-nine seconds.

Leaning over my bed in an eerily similar position I took while in labor, all I can do is shift the weight from, left foot to right foot. There was no sleep last night or rest the day before. But the day before seemed hopeful as I looked through doctoral programs admissions application on humanitarianism and international policy at Columbia.

It took my mind off it.

Today is much different. I caught myself looking at the rings on my finger, doing the pain dance. It’s a new pain. It comes from a place you only know if you have given labor….close to the coccyx bone. It’s hard to tell. I cannot sit and I cannot stand. There’s no relief except when it becomes overwhelming and I vomit. There’s no sleep.

Dante must have included this in his Inferno.

I could see the rings on my fingers through my tears. Yes, I cry. I’m hormonal and alive. I have a sweet little boy I had to ask to leave the room until “mama gets through this part” – the same little boy who asked as I lie with him the other night to never stop holding his hand, not even when he falls asleep, just in case he gets scared. I can feel his eyelashes unintentionally eskimo kiss my cheeks and he falls asleep holding my hand. He will not let go.

I think of his need and his sister and my gigantic love, and I have no idea if I will get through this part. Not even for them.

Even eating is awful. There is no escape from any of it.

I whisper to him that holding someone has a literal meaning, and a figurative meaning. Praying it soaks in as he sleeps and I whisper, I explain that I will hold his hand into eternity. I will never leave. I am always beside him, even when he cannot see me. Just like God is. His son and the Spirit. Believe.

He is young and asleep. He wants me to hold it in a literal way.

Today I wonder how much longer. This isn’t right. Something else is majorly wrong, or it’s progressed and it’s brewing,

I’m swimming in a size 2 J Crew dress. They have smaller cuts. It was tight a month ago. I’m vomiting and holding on, assuming that position that calmed me during labor. My hands. The hands he holds. I stare. What rings will I give Zoe and what will rings will I give him, for his love? God I pray he loves, they love. She is stronger. He is fragile. His heart like mine.

It splinters and crumbles at the slightest things. He loves so hard and is so gracious. He let’s me sing “Jesus Loves You…” as I play with his hair, helping him drift into sweet dreams. He is still part of that age where your dreams are sweet and can care less about tomorrow or some dirty past. He can sleep in. I find sleeping in to be torture. There’s too much pain there. It’s been written. You can’t unwrite the ugly things we have done. We can only try to do the next right thing.

I know this, I have made amends, and yet they catch up to me in dreams and take me down.

The rings. Who will I leave which? Both have great meaning. Neither are the extravagant princess -cut diamond ring with trillions on each side, set in platinum that their father proposed to me with by the Charles River after just five months of knowing each other. Marlo is the only one I have ever seen with the same ring. It made me happy to see it again.

I said mine was at home. I lied. I’m sorry. I didn’t admit that I had to pawn it for $2000 around four years ago. He paid $11,000. I was too sick. We had no help. I did it for my family. So he could keep the lights on. There was no choice and I didn’t feel bad. Women have done such more for their families, I didn’t see it as a sacrifice. But Tony. My poor husband. He almost threw up.

So these are replacements. Not costing anything close (also I am much more aware of blood diamonds these days), they represent what T and I truly cared about...our family at what I consider its best. Helping each other through this. I am proud to hand them down. They represent the fight we must go through for one another, not the day when people pretend I am a princess and make me look like a virgin in white while he is saving me. I am not a fan of such stories.

But this, I don’t know if this one anyone will come through WITH me. T can't walk with me through this one.

I keep talking with God. My plans yesterday were so different from the plans today. Doctoral applications and a decision the next half of my life will be spent on world peace, humanitarianism and not this inward fight. I don't only want to serve my disease. Not me; although I will always advocate for the sick. And I will see the publishing of the second book through.

One thing you should know, if you believe, the faith doesn’t go. I used to wonder if I’d curse God or get mad. I don’t. It doesn’t feel like that at all. I don’t feel mad. I am so grateful I walk this journey with Christ. With God. I am not alone. Everyday I wake to angels around me, routing for me, looking out for me. They are here. I must not let the pain feel louder than their spiritual touch. I shift and squeeze. The pain continues.

It’s like I can feel a presence. I’m being told what to do. My back is being rubbed by my faith, things I cannot see. I have a profound feeling, a knowing…not empirically based. Something I was born with. My parents, once disgruntled quasi-church people, now believers in their pain. I understand. My journey was solo until I found the Dominican Sisters and Shara.

I only took time from the nausea and pain to write this to others, so they may understand. When you are in pain, time works in the reverse way. It’s not your friend on a micro level. A single minute is many moons. Many moons, many years. You age quickly. You writhe and pace and collapse and cry and pray and cry and try to watch something, read something, text a friend (he will tell me I can do this), drink something, not throw up…shift your legs, shift positions, hide from the kids, pee, trip, hide the guilt I feel for holding him back and you are only at 29 seconds. Waxing and waning.

The only way time works for you when you are in pain is by knowing time on Earth is finite. Yes, you think “OK, this is finite”. Same exact words I told my student six days ago as she was trying to detox from heroin...again. I wish I could've controlled time for my little sister. A litter Emo girl, convinced she never fit in. God how beautiful she is. Hold on, this is finite were my words to her, but for me it is different. She can go on, graduate and be something great. For me I wonder, but how finite? Will this be the end of this crisis, or me? If this is only getting worse, I’m okay with either. I can’t believe I just admitted that out loud. My babies. How can I feel that? But no good will come from them watching me go through this. And God knows I am not graceful.

And then you pray that this weird time thing works for you in the end, that they carry you with them forever in ways we can't understand yet. For as long as they go, I come with. Will he feel my eyelashes the way I feel his? Taking that feeling with me may be hell though. I don’t know.

I don’t want to part with my loves and I worry for the little ones if I do. But I have always been honest. I have always tilted everything and pointed out the light. I let them see me pray and read my devotional, go to church, pray with people suffering. Never watch someone else work, always offer help. The universe doesn’t revolve around us, at any age (although literally, scientifically, it truly almost does. Look it up. It’s fascinating). We cannot respond to hate with hate, or violence with violence. We must embrace our authentic selves and serve peace and our brothers and sisters. That and put your shoes in the neat line in the dining room!

And they have been surrounded with some of the greatest minds the world has ever known. I’d like to believe they saw my heart, my justice, and my illness (they too will face adversity and I want them to face it, unabashedly and openly. There is no shame in adversity, not if we learn). I pray they remember what I look like, how I smelled. My eyes. I pray they FEEL me. I don't want holes.

So many things I do not know. I do know what 29 seconds feels like though, just not eternity.

I wonder which way it will go. Will I be achieving a new dream, new knowledge of serving the poor and impoverished, the oppressed, the have-nots, the “lepers” that Jesus held. Or if this is the time where I learn about eternity, and I pass on.

I wonder a lot of things. Shift legs and take my rings off. Maybe that’s a sign. It’s like, “Here, take my rings…hold my earrings…them are fighting words.”

Rings are off.

I am just not ready yet. I can handle 29 seconds a little longer.

PPS-If time is flying by for you, remember it is sign of how awesome you are doing. Be grateful. It is a sign of something blessed. If it is going by slow, remember how fricking strong you are, and how close God is to you. It’s all I can think of as I lean over the bed, dressed for nothing but this war against my body, shifting and dancing in pain. He’s with me. Always. And I am grateful, just not ready.

 

I ask the impossible. by Ana Castillo

“I ask the impossible: love me forever.
Love me when all desire is gone.
Love me with the single mindedness of a monk.
When the world in its entirety,
and all that you hold sacred advise you
against it: love me still more.
When rage fills you and has no name: love me.
When each step from your door to our job tires you--
love me; and from job to home again, love me, love me.
Love me when you're bored--
when every woman you see is more beautiful than the last,
or more pathetic, love me as you always have:
not as admirer or judge, but with
the compassion you save for yourself
in your solitude.
Love me as you relish your loneliness,
the anticipation of your death,
mysteries of the flesh, as it tears and mends.
Love me as your most treasured childhood memory--
and if there is none to recall--
imagine one, place me there with you.
Love me withered as you loved me new.
Love me as if I were forever--
and I, will make the impossible
a simple act,
by loving you, loving you as I do”
― Ana Castillo, I Ask the Impossible

 

*Photo: If Tomorrow Never Comes

Love wins. Love and light, racing.

Being sick is weird. In one way, there isn't a single moment's rest. I am always sick. I am always bogged down with this perching on my conscious or subconscious, at all times. But I am also human and in survival mode without even realizing it; so in many ways there are times I forget I am sick until MS comes around the corner like a bully and punches me in the face.

I grab my nose, still on the cement, wondering what hit me and it's like, "Oy yeah, that's right, I have MS. I really do have it." The blood from my nose is the reminder. Sometimes it takes something BIG to remind me. It's bizarre.

For someone who not only has multiple sclerosis, and has a sis with it and three cousins and writes about it ALL the time (it's my job) it is amazing that I can forget, and yet I do.

I'm sticking with the survival theory. Something in me needs a vacation, or a reason to carry on, so I block it out on some level. 

My boy turned seven (today) and we celebrated over the weekend before my infusion. We left for vacation straight from my infusion. Wait, well we had to replace four tires first. I got my infusion, Tony got the tires, we both got the kids, and we were off.

We are here for AJ's birthday. This was his request. There is no part of AJ that doesn't make me think of MS. I think my Ugly Like Me post says it all:

My baby turns seven and today we celebrate with a bunch of little dudes and water balloons. I can't help but feel happy weepy. AJ turning seven means my disease turns seven as well. They grew up together. It's a very strange feeling, but one that keeps me warm.

I have these little markers now - MS is 7 years old, but look how long his legs are now, his eyelashes, as he sucks his thumb and begs me to let him sleep in my bed for his bday party night. I say okay because it's REALLY special to me (he thinks it's all about him). MS hasn't touched him. It didn't touch me in the way it wanted to either. Look what T and I grew (and our loved ones, it takes a village) over the last seven years of pure fricking chaos lol!

Times I couldn't walk, losing the ability to work, going to work with nothing left in my being but a pump in my arm, hidden under my sweater, and a bucket of fear in my gut. How would I live? How would we live? Paving the way as a writer, no money, just love. Loving hard. Trying to type as fast as the emotions came. Swollen fingers. More love. Daddy being sick. How did we do it?

It's been crazy and look what we still did with almost nothing but a bunch of love. We grow.

We outgrow the darkness and this "badness". No one blamed anyone and we just loved each other and held each other harder. Looking at AJ, celebrating his birthday, I realize nothing evil or bad has been able to rest on me. He is proof. Love grows. Faith grows. The light grows. All at these amazing speeds that are faster than darkness. Amen to SEVEN. It feels like a beautiful number. God bless you my boy.

Playing basketball with you. Pretending to commentate while you win Gold in the Olympics. I can see your little rib cage, porcelain and innocent, breathing hard. I can predict you will have an awesome work ethic as an adult because you already do as a young one at play. You can't work out with a shirt on lol. Watching you climb trees and hearing you call me your best "baller" and the winner of the medal for "best player who has trouble walkin" lol... wakes me up. Makes me run, faster than the darkness. God what a gift you are. I don't believe the sun rises and sets on my children - but man it kind of set and then raised with you. Happy Seventh to you and to Ugly Like Me. We're seven son!

Yes, my posts on the MS page ARE that long. And my love for my boy IS that strong and bound to my disease. MS  felt like the sun was setting, and then this baby started to grow. It was then that MS had no chance. The sun began to rise. It was hard, but I love hard. If I love you - I love you hard. There's no other way.  My husband is the same. 

Since our love is so strong, you'd think I'd be at my best - or on my best - behavior at remembering my limits for AJ's birthday. I know what to sacrifice so I can make certain things happen. You learn as you grow through the course of your disease. I need to really save up my energy to celebrate properly. I did great at his party. Here's a pic.

And I just wrote an article for Living Like You about the importance of respecting heat and being honest on vacations, and yet, I didn't listen to MYSELF!!? Why?

I went to the beach after telling my family I couldn't. I had a fever, they almost didn't do the infusion. My nurse questioned it. I didn't feel right and I felt very wrong when I left. So of course I give in and insist on going to the beach lest two of my babies gets caught in an undertow and T must choose between his love...? I make no sense. 

Anyway, I went and bonked. That's the short version. Because I made that really dumb decision, they are at the movies today celebrating my baby's birthday without me. I am on the couch figuratively beating myself up.

Be wise my friends. I know you want to do everything, but you can't. Why? Because you can't. You have MS. You must be smart. That is just the way it is, for life. Don't be me. Not even for your kids because when they really need you, like on their birthday, to blow out another year and waft the smoke away, clearing the air for a new one - you won't be there.

Maybe your problem and limit is something totally different and you have some other adversity to deal with - the moral of the story is you know what you must sacrifice to be well, stick with it. Don't let guilt throw you off. You are doing what you are doing for a reason, because it is SMART. You must put your own oxygen mask on first if you are going to save any of your loved ones. Put your mask on first...

All I want is for my children to remember me and to remember that I stood for so much even when I couldn't stand at all. I don't need them to remember me as a beach babe. That's not what I'm going for. So today I'm wrapped up in a dress that was meant to celebrate, and some really soft blankies, and praying they are enjoying their trip to the movies. And who knows? Maybe I will be better enough for a celebratory dinner.

Oh, and for the record, I feel like poop but I feel overwhelming gratitude for the love in my life. Seven really feels like the lucky number they say it is. I'd call it blessed. Call it, color it, whatever you want...just color it love. Love wins, even when I'm benched from the game. Their victory is my victory. We're still growing, learning, loving, and WINNING.

God bless my boy who turns seven today and all the players and loved ones who have loved us and held us through the course of our disease. In so many ways I have learned to love by receiving it. Thank you. How our loved ones stepped in and just loved, showed up, and always do...you're turning seven too. Happy birthday to you.