What began as a diary of sorts to help me cope with Multiple Sclerosis, has turned into a book of portraits I have painted that, more often than not, have very little to do with MS. This is for the artists who taught me the most beautiful things come from pain, and my sister, Stacey, who also has MS...
I’m thinking without pain, none of this would be possible. My wildest words, null and void. I’m thinking without pain how taut my skin would be, stretched and see-through, veined.
Indentations of my insides flashing, rising like my mother’s blood pressure. And Sandy’s tides. A throb. A clue. Something is amiss. But it’s ok my dear, for it ties me to you.
Take your tender hands, push all the way through. It is a curse, perhaps a blessing, depending what side you loiter on. Whatever the case, it is mine, and ours, to view. Was always meant to be. It is how we show, or bellies grow. I will disrobe and undress for you, let you trace the scars. Because something in me always knew that these ribbons weren't just mine, but rather, ours.
These bridges of scars; they are one body written in the stars.
You, coursing through these veins. My seemingly red blood, pumping through. I used to think without pain I could somehow be better present. I could clap and stand ovations. Oh dear Lord, the things I would do. Now I see, how incredibly untrue. I know now without pain, there'd be no you in me. There’d be no me in you.
We welcomed HealthEd into our home yesterday to shoot 'a day in the life of a woman with Multiple Sclerosis'. That was the glamorous concept. My life is chaos. So, I have to laugh.
But I was excited to share any awareness that I could. There are huge gaps between the patients and healthcare professionals, and then somewhere in the divide, or perhaps beyond, is the pharmaceutical company.I will speak out and loudly if I can help bridge those gaps.
The first PA showed up at 7:50 a.m. and from there it was non-stop filming and lights and an uber awesome service table til around 3 p.m. It was exhausting, but so worth it. The crew felt like family. We laughed a lot. I fell asleep on the couch somewhere around 4 p.m. and woke up today.
I have to admit, the interview did stir something in me that hasn't been stirred in a while-my PML fears. HealthEd kept drilling home during the interview that I was at the two-year mark of Tysabri infusions. And that my friends, is when shit gets tricky.
Typically, the patients who devloped PML (deadly brain infection) started two years into treatment. I am, precisely, at that mark. The HealthEd interview forced me to remember that I was at crossroads. I am standing in the unknown, and it could take a right and lead me to a garden of healing where I tiptoe through the tulips, or it could turn left (wrong) and lead where no human wants to go. I essentially get mowed down by a MAC truck at that intersection.
The interview with HealthEd ended with a question about my fears, am I afraid going forward, from here. Also, they asked the kicker of all questions-my advice to someone with MS who is considering Tysabri. I always hate advice questions because what is good for me may not be good for you. Think of all of us MS'ers as little snowflakes. We're all so different, we responded differently to different treatments, but we're all beautiful, yes?
I stumbled on the question. I don't know that I answered it to the best of my ability; so, here's my second attempt.
If you have MS, and you have no idea where to start, start with a doctor that gives you options. My first doctor was a bozo who told me take Avonex and that was the end of it. I'm not fully convinced he even knew there were other options out there. Furthermore, he didn't take an MRI my spine. The scariest of my lesions, as far as prognosis goes, are in my spine.
I knew that Tysabri wasn't where I wanted to start. Why? Because it has the greatest risk-PML and dying scraed me. However, after doing daily injections for a year, I knew it wasn't enough to stop the progression of my disease. During that year my doctor kept me abreast of all the recent studies, trying to lift the layers and figure out what patients contracted PML and why.
In that year, I never dreamt I would end up on Tysabri, but I listened anyway. Two things were notworthy about the patients who contracted PML: 1. They had chemotherapy at some point during their lives, and 2. They were positive for the JC Virus.
At the one year mark of doctor-this-shit-is-not-working-help, it was time to reconsider another path, Copaxone, for me, was not working. I didn't feel I was a good candidate for Rebif or Avonex. And so, I was left with Tysabri. My doctor drew blood to see if I was positive for the JC Virus. It came back negative.
I went forward with the Tysabri course of treatment because I've never had chemo, and I did not have the JC Virus. However, I did know that even if I had the virus, I had a good two years until PML might begin. I started the Tysabri the next day.
For me, I knew I was a least likely candidate for PML. I also knew I didn't have many options and I was quickly, losing my mobility. All of a sudden Tysabri wasn't so scary, but rather, it made the most sense. Tysabri changed from a this scary monster of an option, to my last to hope.
Now that I am at the two yeark mark, I am a little more 'aware' of PML again. The fear I once felt when pondering those three letters had dwindled, but the two years flew by. My two year reprieve is up. So now, it is a consideration, but I focus on the unlikeliness.
I try to focus on the hope. The risk of you developing PML is so incredibly low. You are more likely to die from falling out of bed in the middle of the night than developing PML. I keep that thought in my head when I start to feel scared. Secondly, if you are monitored closely by your doctor, you will be fine. Your doctor can tell the signs of PML if he or she monitors you closely.
I am loved. I am well-monitored. I have access to a treatment that is working. Many of my dear friends in South Africa do not have the access. And, I am living a life that I wouldn't be living otherwise, without the Tysabri. I am awake and full and a participant in this life.
If you are considering Tysabri, I hope this helps you with the sordid, wonky, scary, details. Have you tried the lesser invasive treatments first? Have you had chemo before? Do you have the JC Virus? Also, I am infused with people who have the JC Virus. There's that two year safety net, but from there, those patients are monitored very closely. I watch them live and thrive.
I can't live in fear. I learned after my diagnosis that THAT would be my biggest goal, to let go of the fear of possibilities. It was hard. I could lay up all night wondering if I would be in a wheel chair, would I be paraplegic, would I be able to take care of myself? My friend Rainy would always tell me that worrying doesn't fix anything. You can't worry yourself out of a predicament. But, you can accelerate the progression of your disease by the stress and the fear. That is a fact. So, instead, I gradually learned to let it go and to replace it with what I could control. My diet. My lifestyle. My stress levels. My faith.
So, if I can sum it all up to HealthEd and reanswer that question as concisely as possible (Mike, I know you like concise)-No, I am not worried.
Thirty-seven. I don’t feel it. I used to try to push it
away, but that only turned into self-destruction. You can run a thousand ways--a man, a bottle, a prescription, but your soul stays.
Guaranteed you will be left
standing in the exact space you were trying so desperately to break away from, no distance to claim.
Only you won't be dressed. You'll be naked, and wet and shaking.
Exposed and shamed, placeless. And you will feel like nothing. Don't be fooled by 'nothing'. It is the heaviest of all heavies you can feel.
I distinctly remember not wanting to claim a permanent residence. I didn't want to be claimed. To be claimed and to stand still might in some way allow my roots to get in, to get under. That, in turn, would make me old. I didn't want any part of me to take hold. So, instead, I'd self-destruct.
I was in denial. But denial or not, we get old. Loved or not, we get claimed. Rooted or not, we die.
I think when I stopped trying to wriggle free, something
came over me. I call it God, but I don’t know. To different people it comes in
different shapes. It is dressed differently, whispers in a different voice. A
tone that only you know.
I have pinpointed that place and labeled it the ‘precise
moment you are grown’.
You stop wriggling and fidgeting. You stop picking on
yourself in the mirror. You don’t circle the faults and the cellulite with a
Sharpee. You don’t call yourself harsh words like cunt, or fat or ugly or
worthless, or cunt again.
You let your roots get under. And you let yourself love, and be loved. You start to believe what Sr. Barbara told you. You are loveable and capable.
You stop, and you look. You look so hard, but with a
different angle. You aren’t focused on the shadows, you marvel at the light. Growing. You
are not young and ripe. But rather, you are aged and light. You are faulty and
right.
I don’t know where the time has gone. Who keeps it? I wish I could take back
all the time I spent struggling, trying to get out of this. Wasted on false
idols and wrong people. I wish I could take it back and use it pursuing every
dream I ever had, but never dared tell. Fat or not. Ripe or not. Cunt or not. Loved.
Now I get the light. I needed that time to understand it. A contrast. A backdrop. I couldn't be here without it. Nonetheless, I look up and thank Him for getting me out of it.
Thirty fucking seven and I am finally OK. I can say I’m no longer afraid-of naked, of death, of God, or cellulite. I'm not afraid to claim my babies and kiss them goodnight.
Only 37 years to understand, I am, we are, the light.
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.
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 100th, 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.
I haven’t really written about my MS in a while. It’s kind
of been stagnant, in a good way. Little moments and symptoms here and there that I just push
through until they are over, and I move on.
One of the bigger things that has
happened since I last wrote is that we lost Shawn. He decided to end his life with Death with Dignity. Because his death sparked some controversy, I didn’t really want to discuss him just
yet. I'm just not 'there'.
I have plenty to say about the man, but I didn’t want how he died to be the source of controversy or debate on here. It's so peripheral to me. How he lived was the point. T. Shawn Kuster was an
inspiration. But then his life and his absence are so huge that I don't even know how to approach talking about that aspect either. Honestly, if last night never happened, I wouldn’t be discussing my friend at all. But some things we don't choose. Some things, like timing and love and parents just aren't ours to choose. Hence, I didn't choose when to write about Shawn, he and timing chose me.
Shawn was a rare and beautiful bird. As the MS slowly began to wreak havoc on his body, it began
to take his legs. It was slow at first, but deliberate and hurtful nonetheless. But Shawn simply carried on with his life. He
jumped out of airplanes, made plans for opening an MS hospital in South Africa.
He wrote some books, and carried on with his life in Switzerland.
Besides all
the wonderful things this man has done, the one GREAT thing that really sticks
with me as a human who happens to have MS is that Shawn never complained. He
was sassy and feisty and funny, but he would be serious when he needed to be. He walked a perfect line between talking about some rather scary, icky issues openly, and being funny at the same time. I think he understood that for his friends, some things were hard to talk about, and yet they needed to be addressed. His humor was his way of walking his friends through it. And he never, ever complained. He had to face some really over-the-top heavy things, and he smiled through it all.
One of those issues was a doozy of an issue-his right to die with dignity. Shawn was adamant that if he reached a point in his MS where he couldn’t
feed himself or wipe his own ass (his words, not mine) he deserved the choice
to die with dignity. It was a right that he fought for and
won in Switzerland.When you are granted the right to die with dignity, you are given a cocktail of drugs to take when you decide. He's had the cocktail by his bedside for months.
A burden was lifted when he procured the right to death
with dignity. The relief from knowing he wouldn't be stuck in his body, trapped in a bed, was a huge relief. And strangely enough, it changed the way he lived. He was
lighter again; like the world had been lifted
off his shoulders. He started to dream again, to make plans. He was happier.
Knowing that he had this ‘cocktail’ of choice altered the quality of his life for the better.It's almost like it slowed the progression of his disease...for a little while at least.
About 3 Fridays ago I pulled over as I was driving to
Target. I had this feeling, this urgency to write Shawn. I pulled
over to write him that he was on my heart, and that I was thinking
of him and always praying for him. “I hope you feel it my friend” were my last
words to him. I knew from my friend, who was very close to him, that the MS
was moving quickly now. He could barely move a finger or swallow.
We knew that Shawn was now walking the line between taking
the medicine too soon-what if he got better?-and too late, you must be able to
administer the medicine yourself and to swallow on your own.
I sent him the inbox and went on my way. Zoe and I said a
prayer for him as we drove. When I got home, I received the message that he was gone. It was like I felt
it. My friend Sherri had a similar moment like I did that day. Another friend sat outside, looking at the sky and had a feeling that he was gone. I believe that we all felt him as he was leaving.
I called my friend who was close to him and told her. We cried for about two hours together on the phone and then
hung up to go through whatever it is we need to go through as humans when
we realize a soul we loved and knew departed.
I cried a lot. I looked at things I usually miss, like the
sky and dandelions; a beautiful stone that looked so distinctly different and
polished from the others. I picked it up and handed it to my son who always
notices things like these at just three years-old. I looked at everything,
closely, in a new light and thought, “Shawn.”
Slowly I began to stop weeping and move to the next
phase-that phase where you rejoice that someone is now free and resting
eternally. He’s no longer in pain. He isn’t trapped. I think of him and pray
for him often.
And then something happened last night. My rather unremarkable
(in a good way) MS adventures took a turn for the worse. I had a really good
day. I remember taking notice of how I wasn’t walking funny, no noticeable limp. But at 9
PM I started to get a pain in my lower right abdomen. It would contract and
come in waves. It felt like kidney stones, but it was in the front of my body.
If I leaned over something I could get through them.
But the scary part was that whatever was happening was
setting off electrical fireworks through my legs. It was a combination of
numbness and sparks that I’ve never felt. At one point I had to stop leaning
over the counter to get through my latest ‘contraction’ on the floor. My legs
could no longer hold me. I had a moment of pure, concentrated maxed-out panic.
I looked up at Tony and said through the tears, “Shit, I think this is it. I
can handle the pain, but what if this is the last moment where I have my legs?
What if this it?”
This may be one of those moments that changes everything. T helped me to our room. Later, I was lying next to him in bed and I
said, “Shawn.” Suddenly, Shawn was a wave that came over me. Shawn.
“Shawn jumped
out of planes with no legs. Shawn had to decide whether to live trapped in a
body, in a bed, in a room at some hospice place in Switzerland. Shawn lived with
no legs and then some. He was happy. He wouldn’t freak out like I’m
freaking out right now.”It was like he was next to me, holding me and slapping me at the same time-get a hold of yourself Jamie.
I lie in bed thinking of him and the more I thought about
him, the more I let go of my fear. The more I let go of the fear, the more the
pain subsided. Shawn walked me through it. He lost his legs in this life, but
at the moment my fear turned to praise because he was walking me through this.
Shawn walks with me now. He holds my hand. He lifts me up.Maybe this is the next phase. When you fully know that someone is with you, that they are in you and part of you, beside you and under you.
Praise be to God for such a gift. Shawn is with me. He's a part of me, and he's walking. I know it, I feel it. He walked with me last night.
Of course he has cancer. I mean what healthy, rock of the family, baby-whisperer perfect man wouldn’t get it? Especially after looking after the Multiple Sclerosis-ridden wife who loses control of her legs and sometimes, right before her infusions, can’t lift her head up off the ground.
I just kind of crawl around town with my head dragging beside me, trying to take care of my family. Of course the healthy and strong of the two would get it because life is all about irony, no?
I say all this sarcastically to a God I defend fiercely. I'm walking around muttering this to whoever is up there listening. Jesus? Grandpa? Vince? Anyone?
Since my diagnosis I’ve been waiting for the other shoe to drop. I've been looking for the abyss. I know how life works.
It's funny because people used to try console me about my MS. They'd shower me with all kinds of lovely words to try to comfort me, to keep me going. They'd say things like, "You don't deserve this, but we know if anyone can handle this it is you." Despite the loving intention behind these words, I always knew not to buy into them because bigger things happen to better people all the time. I always felt like ‘the bigger’ was coming. Many thought I was optimistic, inspirational even, when really I was just paranoid. “Watch,” I thought. “He will be the first to fall. They will be stuck with me, alone.”
He’s been out in San Fran for a month working at the U.S. Open. He was tired. He wanted to come home. I was tired and counting down the days; two kids, different freelancing projects. Multiple Sclerosis. Picking him up was like Christmas. It was marked on the calendar and yet we were trying to ignore it. Occasions like this you must ignore or the wait is torturous.
I was trying not to hear the bells until the very last minute and then I hopped in the car and drove to Newark International. On occasions like this, even the Turnpike looks beautiful and snowy on a stifling summer day. You can smell cinnamon and apple pies over the sewage. The drive feels cozy. Daddy is coming home. And he did. He landed. We did a big family smoosh-hug thing. We were happy and everyone was where they should be.
And then a few hours later he was standing over me. “Mama, I can’t breathe, call 911.” He collapsed after the last audible ‘one’. I’ve used my iPhone a kabillion times; funny how I couldn’t manage to change screens and dial three little numbers when my husband needed me, for once. The one time he needed me I couldn’t operate a fucking phone. I couldn’t move my fingers.
I finally got it right. I was trying not to yell. I wanted to soothe him, and the babies. They were sleeping in the back room. Was the door shut? They can’t see him like this. Is the door shut? My thoughts were more like flashes. The way you see memories from when you were 4 years-old. Flashes of thoughts, subliminally connected. Not necessarily connected, but kind of.
At some point he got up and I tried to guide him to the couch, but he collapsed again in the kitchen. 911 walked me through it. I got a pillow and put it under his head. “You’re gonna be ok baby. They are coming. You’re gonna be ok.”
His eyes were open. The dispatcher said this was a good sign. I could see a huge light outside the living room window. Right when I realized that I had to open the doors to let them in, he said he had to go to the bathroom.
“Don’t let him go alone,” the dispatcher said.
“Baby, I am just gonna open the door for the cops. Just let me unlock the doors and I will take you.”
I went to unlock the doors and it was one lone cop. I left him there and bolted for the kitchen, but he was gone. He had gone to bathroom, alone. I found him slumped over the tub; the shower curtain wrapped around his head. He back side in the air. He was thrashing violently. He didn’t make it to the toilet.
I remember trying to get the curtain away from his face so he could breathe. I kept telling him I loved him. And then the paramedics came. Thank God for the paramedics. Thank God for 911.
They let me take him home last night. His last test was at 5:30 and then I took him. He has to see an oncologist next week. They think it’s Carcinoid Syndrome.
I keep thinking of him, and my sickness. I keep comparing the two. I keep seeing him slumped over the bathtub with his face wrapped up in the curtain. Seizing. I keep feeling total shame at the moments I ever felt pity for myself and my MS.
The beauty of me being sick is that it wasn’t him. And it wasn’t them.
I have these little ‘aha’ moments now and then. More specifically, they’re more of 'I’m old' aha moments. So, naturally, I’ve been compiling a list of these moments. Who doesn't record such moments in the midst of work and raising children and going to the DMV?
So,I write them down on little stickie notes when they hit me. I'm not totally sure WHY I feel the need to record these moments, but I do know that I love lists, AND I’m constantly grappling with the realization that I'm getting old. The older me fights the once-so-certain convictions and preconceived notions of the younger me. We are constantly wrestling with each other.
My life is a mental iron cage match with the younger me. And although I’m probably not as strong as I was back then in some ways, in most ways I am stronger now-the older me wins every time. So here they are-these were my old aha moments that made it onto my stickie notes:
I have no idea what channel MTV is, or VH1 for that matter. MTV was my life. What happened? That’s what ‘I did’ growing up. And when I REALLY matured, I transitioned to VH1. Now, I have zero idea what channel these are on my cable channels. The other day I was frantically searching for Caillou and bumped into MTV and was like, “OMG, MTV! I forgot about that! When did MTV stop being my world?” Long story short, when I had children.
For the record, music is still important. I’m just not that big on trends and clothes and rock music fashion. I sing folk songs with my kids. Many of my friends are muscians. We watch live music all the time. So, what’s my point? I’m still cool.
I get the whole ‘sneak candy into the movie theater’ concept now. I took Zoe to Pathmark to get Sour Patch Kids before we went to the movies the other day. I think she looked depressed over the whole smuggling candy into the movie's situation. In my head I was having flashbacks, images of Eddie Murphy Raw were flashing through my mind. More specifically the part where he talks about how, as a kid, all he wanted was a McDonald’s burger and his mom refused to spend the money. Instead, she made him this big, homemade, bloody meatball burger on bread (and it got all doughie and pink).
Crap. I don’t want to be a sucker and pay $6 for a small pack of Swedish Fish, but I don't want to be that mom either. So, we made a deal, we would smuggle in the candy but buy the popcorn. Child size.
Friday nights mean nothing to me (or Thursdays, weekends, or summers), like they did as a kid and through college. I was tutoring a student Friday night and there was this ruckus going on outside. I asked her what it was and she said, “It’s Friday night! Everyone’s always out and hanging out on Friday nights.” Oh yeah, I remember those. Fridays! Fun Fridays! I am totally old. By the time Friday night rolls around I’m exhausted. The perfect Friday night would involve take out sushi and sleep by 7 pm.
I get the whole ‘plastic on the furniture’ thing too. We recently reupholstered our dining room chairs. My sis and I thought we were genius when we thought to buy a plastic shower curtain and fastened it over the fabric because my kids destroy everything. If my son kisses me he leaves a chocolate grease stain on my cheek. My sister was genius!
It wasn’t until later that night as I was falling asleep that I thought, “Holy shmolies. I am way too excited about plastic furniture. I am my Aunt Millie!” She was my lovely, old-school Italian Aunt. So be it. I’m honored.
I wanted a cast iron pan, and furthermore, I wanted to marry my husband all over again when he surprised me with one.
Black licorice jelly beans are my favorite. I pick out all the pastels in my kids’ stash and throw them away my children aren’t looking.
I don’t run if I don’t have to. Even when I was running long distances, it was to satisfy this need to be fit, to lose weight, to be strong, or to get a medal for proof. Now, I watch my kids and am always perplexed at how much they run, like for no reason. They run when they are excited. They run when they are scared. They run to me when they want to be held, wrestle, cry, hug. We were walking down the street the other day and Zoe goes, “Last one to the corner is a rotten egg!” and took off like a bat out of hell. How often do my friends and I do that? We don’t. We, umm, eat.
I don’t sleep. As a kid I would, ideally, sleep until 11. I can’t sleep for more than four hours at a clip. My mind is always reeling. I have to pee every hour (that’s an old thing too, no?). Even on days when I have help and need to lay down, I can’t. My body and my mind keep on keeping on. So I will lay, but I will have an iPad, an iPhone, and a TV on.
I had a mammogram. Mammos were something ‘older’ women did. I just had my baseline at 36. I went in there feeling a little old. I left there feeling empowered. I did the right thing. You should too.
I used the following terms and/or phrases: Slacks, youngster, ruckus, and ‘wait until your father gets home’ and 'Because I said so'. Yikes.
I’m not cool. I was kidding when I professed to be cool. I wear elastic-waisted pants when no one is looking. And I’m OK with that, which in turn, makes feel good. Or proud. Or calm. Some combination of all three of these words.
Cool. I think that is the biggest distinction between then and now. I spent my youth trying to be cool; handing my heart to cool kids, cool boys, who truly were not worthy of handling it. Cool was unkind. It was impossible. It was jealous and spiteful. Cool was so fricking self-destructive. And exhausting. As a grown up, I have zero interest in being cool. It’s uncool. And I am way ok with that.
As a youngster I saw life only at the surface, through a superficial lens. I don’t mean to undermine the importance of the young angle, but I see things on an entirely different, deeper level now. Maybe that is why we attach the word ‘growing’ to the word ‘old’? The lessons I gathered from those experiences didn’t come to me then. They came to me after. A direct result of ‘growing old’.
Now, I understand what it means to earn my money (despite exhaustion). So, I don’t waste it. To the young me, it was embarrassing to sneak candy into the movies. To the old me, I see what my parents did to put me through private school and then college. I hope to do the same for mine.
Mammograms, maybe I saw 40 as old back then, but right now, from where I stand, I realize how truly mortal I am. When you are young you truly believe you are immortal. I used to not fear flying because I believed that even if the plane crashed, I would live. So I wasn’t afraid (for the record, most of the time I wasn’t flying alone-way to consider life without your family, jerky!?). As a grown-up, I see that I am mortal and I take that with me everywhere. From flying and mammograms, to cast iron pans.
Some of the fear I could do without, but in terms of my health, it serves me well. And fear of all the other goodies, like sickness and death, well that is where my faith comes in. For the record, sometimes I feel like being a Christian is super uncool, but I understand where and why that may be.
Growing up and chasing cool is exhausting; surrounding myself with people who inspire me, who are totally comfy with things like my elastic-waisted pants or my faith, or my sometimes limp, is uplifting. So many people are so gosh darn cool. So is not being angry. I’m a lot more forgiving of myself and others the older I grow.
Old is good and calm. It's black licorice and babies in my bed. Old is changing and shifting definitions and direction; beauty has very little do with looks. Old is serving, despite exhaustion. It’s growing and forgiving.
Old is the smell of my Aunt Millie’s ‘fancy room’. Old is remembering how she’d let me fondle her antique typewriter on the back porch, while singing the alphabet. It’s a whisper into the wind, “Thank you. I remember…”
Old is using an expression that used to exasperate me when I was on the hearing end in my youth, and suddenly feeling like it is my mother’s arms extending to my children. It’s endearing and comforting, never annoying.
Old is so much more meaningful. I’ll treasure my youth and my memories and my lessons, but I’m so much more comfy the older I grow, and I'm pretty sure it's deeper than my elastic-waisted pants. I’m OK with growing old and elastic-waisted pants. It’s not as cool to be young, to me, anymore. I’m cool with growing old.
Choosing to go on Tysabri wasn't, well, a choice. In fact, Tysabri scared the bejeezus out of me. It was a last resort. It was lauded as being a miracle drug. People who couldn't walk as a result of their Multiple Sclerosis, finally could.
But there was one small glitch. Some people developed PML. In layperson's language, PML is when your brain cells die. The patient either died, or worse, they remained in a vegetative state for the remainder of their lives.
I was just diagnosed with MS, January 13th, 2009. My baby boy was 6 months-old. My baby girl just 4 young years. Tysabri and PML were not an option. So, instead I did what everyone swears they never could-I chose daily injections.
They sent a nurse to show my husband and I how one injects oneself. They suggested to rotate spots because your skin gets hardened when you inject the same site every time. They even gave us a hella big magnet for my refrigerator that very colorfully outlines the exact spots you may want to inject with a space to note where you injected last so you knew where to rotate and when. Fun.
So, that's what I did. Surprisingly, the stomach is the easiest place to inject, especially if you just had a baby. I thought for sure it would be the bum region. Nope, I always went for the belly. And the leg, which is part of the rotation, I never went for. I don't have much fat on my legs. And I like my legs. Injecting leaves them scarred. They will tell you it doesn't, they lie.
So, that is what I did. And I continued to get sicker. They kept saying Copaxone takes time; 8 months at least. So, I kept holding on and dreaming of the day I would feel normal again.
Lesions. Let me go back in time and explain.
After my doctor discovered the lesions on my brain, he ordered an MRI of my spine. I walked in, almost cocky, to gather the results. In my head I thought, "Well, the worst is over. We already know about my brain. What can be worse than lesions up there?" I knew by the look on my doctor's face when he walked in that I should have never ever dared to think that. Dag.
He said my MRI was 'troubling' and we needed to talk. I love my doctor. He has a lovely bedside manner. His sister went to Mt. Saint Dominic Academy in Caldwell like me. His dad sits on the board. He carries a prayer book and rosary beads in his pocket. He's constantly tucking them into his pants pocket-his pinky ring shines. All these little things add up to why I chose him, but the biggest thing is that he cares. When I cry, it pains him.
So he told me my spine is riddled with lesions.The problem with this is that in your brain there is room for error. It's big enough. But your spine is as wide as a Sharpee, one error there can render an entire quadrant of your body useless.
So I sat. I did that thing where you try not to cry but you end up doing a hiccup hyperventilating, lower lip quiver thing. Finally, I just let go and cried.
The doctor I saw before Anselmi never thought to look at my spine. He acted like I had little more than a cold. He was smug. I knew what I felt deserved more weight than that, but this was a smidge too much to the other side of the MS spectrum. I didn't want to have a discussion about wheelchairs at 34.
Anselmi was concerned because I was leaving for California in a few months to visit my husband at the U.S. Open. "Jamie, I don't want to get a call that you are in a hospital 3,000 miles away and you can't move." That was when I knew what my MS looked like.
People always tell you what their aunt's MS looks like, what their sister's looks like. My sister has MS. I saw hers on a daily basis. But this was mine, and to me, it was the ugliest face I could ever imagine.
I wanted to play with my children. I wanted to run more marathons. I wanted to participate in life. All of a sudden my future began to look like it wouldn't hold any of these things.
Anselmi was always surprised that I was still moving. I went to California and made it home OK. I still woke at 4 am to write and was at work by 7:15. But my body was shutting down. My legs stopped walking and my gait was reduced to a slow shuffle. I would step forward in the hallways and grab on to my colleague feeling like I was flipping backwards, when I wasn't. My colleague would jump. I'd be embarrassed and retreat to my classroom.
My weight fell to 106 pounds. I couldn't muster up the strength to do very much. Even eating was an exercise that my energy depleted body couldn't afford.The quality of my life plummeted. I was hooked up to steroid pumps at home at different periods to help stop the inflammation in my spine, but getting off of them was hell.
I took a vow to never do steroids again. If I go blind (Optic Neuritis), I will, but other than that, no way.
A year after my diagnosis I was tangled up in another exacerbation. Anselmi suggested we take blood and see if I have the JC Virus. The people who developed PML from Tysabri all were positive for the JC Virus. If you don't have it your chances of developing PML are next to nothing. My tests came back negative. I was starting Tysabri in three days.
Tysabri scared me, but I was barely living. I was holding on to things, holding on until I got home, even in bed I was holding on to the hope that someday I would be able to participate in my kids' lives. My life sucked.
It didn't suck in one sense-I had a beautiful family, a husband who rocked, two careers I loved, but with the MS I couldn't partake in any of it. It was like having this big, beautiful coconut layered cake in front of me that I couldn't eat. Torture.
So, Tysabri it was. The monthly infusions changed my life. I could move again. I could get through the day without sleeping on my desk. But the thing with Tysabri is that it wears off. So, the first few weeks you feel better, but the week before your infusion you start to go downhill again. Maybe that's a gift, a monthly reminder of what my life used to be. It kept me thankful for my treatment.
So far I've had 15 infusions. United Healthcare has covered them, without a problem, until infusion 12. Such an arbitrary number, no? For some reason the last three they denied payment. So, my doctor's office inquired. They said they needed certain verification. We sent the verification. No word. No money. We even have proof that we sent all information that they required.
Tysabri is $8,000 per infusion. The doctor gets $3,300 from UHC. Someone eats the other $4,500. Hmm. Last week my doctor asked me to call. It was a last resort. So I called and the woman was so kind. She said that being sick was all I should have to worry about and that she would fix it.
She transferred me to another woman, and we got my doctor's office on the line at the same time. She said they were backed up, it took two weeks to get the info from that particular fax number. So, she gave us her direct fax. Problem solved! Right?
Nope. Yesterday, my doctor's office called. United Healthcare will no longer pay for my Tysabri due to 'insufficient information'. Three hours she was on the phone and ended up with a man in India. He hung up on her.
He had no idea what the service was that he was telling her to appeal. He told her there was no other option and, "No, she couldn't speak to a supervisor." And then click, he hung up.
I don't mean to digress, but I used to hang up on my mother when I was a snotty prepubescent kid. Who the heck works at an insurance company and hangs up on the doctor's office?
Tysabri isn't something you can stop. It is a maintenance drug. The office manager asked the guy if he understood this. He said, "Yes, she can't stop the service. He had no idea what 'the service' was. A flu shot? A pap smear? No idea.
I asked my doctor not so long ago what I would do if I wanted more children. He said, "Jame, I'm a Catholic, I'd tell you to have more kids."
So I said, "Can I continue with the Tysabri if I'm preggers?" "Oh no," he said.
"So what happens when I stop," I asked.
"Well, I only had one patient go off due to pregnancy, she went blind. You'll go into a severe relapse."
Alrighty then. I can't stop it or I will, undoubtedly, go into a severe relapse. I will, undoubtedly, not be able to take care of my children, let alone participate in their beautiful little lives.
Why would an insurance company, that I pay into, allow somebody to start a maintenance drug and then pull the plug on it, leaving the patient worse off than they were before they started? Isn't that why we went through the preauthorization process? It was approved and United Healthcare agreed to cover the infusions at 100%.
Why does United Healthcare have insurance reps in India that hang up on people and have no idea what the 'services' their clients are disputing entail?
My friend is on Tysabri. He also has United Healthcare. His last treatment was held up because, according to United Healthcare, they were backed up. His infusion was a week late. Another person, with United Healthcare, is infused right next to me every month. They haven't had a problem.
So, are you backed up? Did someone mislead you as to what Tysabri treatments entail? Were the nurse's notes not enough? Everything is meticulously detailed and has been faxed approximately twenty times? Why do others have zero problems? Why does my health depend on who I happen to get on the phone?
Time. Time flies as you get older. It flies when you have kids and work. It flies when you are sick and you only have so much time to get everything done in your day before your body bonks. It is, at the risk of sounding dramatic, precious. Some people have very little time to waste.
I can't help but wonder how much more of my precious time United Healthcare will take? If they ever pay for my infusions, will they also pay for the hours they took from my life and my kids and my doctor's? How will you compensate for that?
*Since this article was published on nj.com Ive received an overwhelming amount of support, from friends, colleagues, and strangers who intervened on my behalf.
Senator Frank Lautenberg was one of the many lovelies who spoke out for me and my health. Thank you. While I am grateful, I can't help but wonder why it took a story, a platform, thousands of pageviews, a social media shit storm and a senator to get the care I was promised.
But furthermore, I want to say this, because I happen to have health coverage and I happen to have a bigger platform than some, does not, should not, make me any more privvy to proper health care coverage/treatment than those who do not. Every person deserves fair and equal health care coverage.
My heart (and my platform) goes out to those who fight sickness daily, and who are not 'entitled' to the same care I am because they cannot afford to 'pay into it'. If I can help you, please let me know.
Today is one of those days ‘it’ hits me. I can’t ignore the lesions. I cannot will it away.
My legs disintegrate into quick sand on the hard wood floor. They struggle and wobble, searching for their rightful place. Days like this, they simply don’t belong. Anywhere.
I will them forward toward my son; his Star Wars hand-me-down shirt in hand. I WILL get his shirt on, even if it kills me. Days like this every small ‘thing’ is a mountain. I have climbed about 20 so far today and it’s only 10 AM.
I tell myself, “Just focus on this mountain in front of you, don’t look to see how many are hiding behind this one; take it one mountain at a time.”
I wonder if I would have any will, had I not had children. Having Multiple Sclerosis and the threat of paralysis hanging over my head doesn’t really inspire me much. Big things like that used to piss me off in a self-destructive way. I would simply get pissed and quit.
BUT, when you have children, especially small children, you have no choice but to go forward, with or without the use of your legs. It’s automatic. It’s reflex. If I had to shuffle on my stomach liked a beached whale, arms like paddles, I would.
Thank God for them, and for the infusion scheduled for tomorrow.
"Poets claim that we recapture for a moment the self that we were long ago when we enter some house or garden in which we used to live in our youth. But these are most hazardous pilgrimages, which end as often in disappointment as in success. It is in ourselves that we should rather seek to find those fixed places, contemporaneous with different years."
-Marcel Proust, In Search of Lost Time
All these things I’ve ever written about little whispers of confessions and struggles with love. How we struggle with our partners and question our destinies. How we, no matter how old we are, continue to wrestling with ‘what if’s. They seem to move in like old lost family members who have been displaced. Just like every family has one of those, every head has a 'what if'. Normal.
My 'masturbation and other honesties' post was about pain and insecurity. It was about the holy few who refuse to admit that they ever have moments of doubt, in any thing. I wrote it in five minutes out of anger.
Gloria Steinem said, "If you are going to be angry let it be constructive." That was the only constructive way I could tell certain perfect puppets to go jump. But, more importantly, to let people know they aren't alone. Everyone goes to those places. We are peeking over picket fences, "Whoa, look at the flourescent green grass they have on that side." OR, they, we, are peeking on the past.
The past is a sneaky, slimy thing. Don't be fooled. There's another side to all of this. Walks down memory lane tend to be romanticized. That is the danger of giving too much power to the past. We forget all those dangerous details that colored, like George Seurat in tiny little dots, those relationships. The greater the distance between then and now, the more clouded we tend to be as we look back.
We forget the pain and the reasons why things didn’t quite pan out the way we planned. We forget WHY we abandoned those routes for new ones, lined with possibilites rather than dead-ends.
We wanted different things. Important things, like kids.
He never grew up and couldn't put down his game-boy and his joint long enough to look me in the eye.
He made me feel dumb and ugly.
He didn't love me HARD the way I loved him. I deserved someone who loved me as HARD as I loved them.
Some of my friends got married, denying their sexuality. It caught up and they were brave enough to leave. Brave enough to say, "I made a mistake by trying to fake it. I wish you'd understand, but if you can't I'm OK with that too." Lies like that are all-consuming; a slow tortured death where you are supposed to fake it and smile. Some of us need to reassess and get gutsy and move on becuase you can't, no matter how hard you try, outrun who you are.
But for others, the roads we have chosen are hard, but a different kind of hard. It's the kind of hard where life gets in the way, chaos and tragedies and sickness. It is life. You could change course, but it doesn't mean that course won't be riddled with bumps and forks as well. You can't outrun life.
Difficulty doesn’t diminish the significance, the choice of where you are today, or the direction you are heading. My 'what if' post was not telling you to run. My deepest apologies if that was the mixed-message I sent you.
My father always said, when I didn't want to go out for a run, "Jamie anyone can do something that is easy. Extraordinary people, really successful ones, make themselves do the hard things too."
Everything in this life worth anything is hard and worth fighting for. Like marriage and equality or your dreams. None of those things will ever be handed to us. You have to fight and you have take them.
My friend Stacie married at the tender age of 19. The priest balked at the marriage and advised her against it. She fought for it. I remember her telling me that the wedding was somber. Her priest treated her marriage more like a funeral, a half-assed attempt at a celebration by a priest who didn’t feel comfy presiding over a marriage that, in his eyes, was doomed. I’m not even sure if he told the groom to kiss the bride after they made their vows.
Fifteen years later, she still fights for the man she chose despite the naysayers. She has two beautiful blonde sprite-like beauties that are little replicas of her. They are gorgeous. Same man she fell in love with then, she loves and fights for now. Does she ever wonder about other roads now and again? I’m sure she does.
But she keeps her promises no matter how bumpy the road gets. She keeps her promise.
This song reminds me of Stacie, and all my friends who keep their word despite the bumps. Marriage and kids and frienships and promises get hard. The beauty lay in the continuation to fight these little battles that come with age and marriage and children, the grace with which Stacie fights to tend to a sick child. The courage she exhibits as she begins a career in her thirties.
This song makes me think of her and the commitments we make and the battles we fight as we grow older to keep those promises. It makes me celebrate the people and the marriages, that learn to dance in the mine fields.
I was was surfing the channels last night, watching the gazillion shows on wedding dresses. The prominence we bestow on the spectacle of the wedding. It made me sad. How many of these will last? If we focused less on gowns and thousands of dollars spectacles, and more on the art of dance in the mine fields with our partners, gosh dammit how many joyful marriages there would be?
And weirdly, or maybe not, I keep going back to my friend Robyn. Some of us have friends who, for watever reason, committed to us years ago. Friends that took a silent oathe of loyalty and never left-no matter how many kids, moves, or men came between. This song is for Stacie, who keeps dancing, all these years later. And for my dearest friend Robyn who knocked on a stranger door years ago and asked me if I wanted to run.
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