Healthy

Now that Christmas is over and we are rapidly approaching a new year, my Facebook feed is constantly asking me to look back at all that has happened in this last rotation of the earth, which for me has been…a lot. The end of 2017 and the first five months of 2018 were pretty much the worst. There was too much death, another major surgery, and most of my time spent feeling sick, exhausted, and legitimately close to a nervous breakdown.

But in the later half of 2018, things have started to turn around for me. It has now been over eight months since my last blood transfusion and/or iron infusion. To put that in perspective, for the year prior to that I was getting them as often as every week. That means my horrible surgery last March with the agonizing recovery actually worked!!!

I am no longer loosing blood at an alarming rate, I am not in pain, and it has been long enough now that I am starting to trust and dare to hope that I am healed. Now I know that my health will always be more complicated than the average person. I will have to get scans and scopes forever. And a stomach bug could easily put me in the hospital. But I might finally get a break from the near constant beat down that my body has been under for the last seven years, and that is a prayer I was not sure would ever be answered. At least not in the way I wanted.

It’s funny, but in the last few months I have gotten the same comment a lot, “You look so healthy!”

At first I wondered if they were just trying to find a kind way to say I have gained a bunch of weight. After all, I have put on a solid 40 pounds since I wrote this post a few years ago. I was reading through my half written drafts on this site (of which there are many) and one of them was called “2014 can kiss my skinny ass!” I changed the title before publishing, but you can read that post¬†here to get an idea of where I was a few years ago at New Year’s.¬†Spoiler alert, it was not great.

While I would no longer describe my ass as skinny, I am definitely in a better emotional and physical place.

So if they weren’t just referencing the fact that there is a bit more of me to love, what did they mean by healthy? I started listening to the other things I heard people saying about me- I have color in my cheeks, I look happier, and I have more energy. I realized that since I moved back to Dallas, I have been pretty consistently sick in one way or another, even if I was trying my best to hide it.

They only knew a Natalie who was in a constant battle with her body. Who went almost four years with barely enough blood to function. Who was fighting crippling panic attacks and depression and who just generally felt crappy a large portion of the time.

What they are seeing now IS more of me, or at least more of the me that has emerged from the shitshow of the last few years. When I wrote Scar Tissue, I said, “I think I am going to like the person who comes out on the other side.” And I do. I am discovering a me who is confident, resilient, has a compassion that comes from having lived through tremendous pain, and who is no longer controlled by anxiety and depression.

I am still grieving, which is different. I get sad because of my losses this past year. My heart hurts when I come across a shirt design like this one and think how much my brother Mark would like it, but then realize that I will never buy him a Christmas present again.

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Man, Mark would have loved this!

That, though, is not depression. That is the reality of dealing with the death of someone you love. That pain is the reminder that he was real and he was important and that I will probably never stop missing him. I understand now that deep grief doesn’t go away, your life grows around it and it changes into something more bearable.

Depression for me is like looking at the world through a sheet of Plexiglass, everything is distorted and feels far away. And I can gratefully say that is not how I feel these days.

I experience joy, and love, and frustration, and sadness, but they are bright and clear.

As we go into 2019 I feel a kind of hope and excitement that I haven’t been able to access for a long time. The kids are great, my husband is supportive and funny and always there for me, I have an awesome village of family and friends, my mental and physical health are the best that I can remember, and I am gearing up for Mommies In Need to expand in a way that will allow us to help exponentially more people.

So, yeah, I guess I am healthy and it feels pretty damn good. I am ready for 2019 and I can’t wait to share it with you!

The Unimaginable

“Are you ok?”

“No. No, I am really not.”

I answered honestly as I broke down in my friend’s kitchen in a fit of wracking sobs. And then I was literally surrounded by love as seven of my closest friends huddled around me and held me when I could not stand on my own. Then one of them in beautiful comedic timing said “Here, hit Sujata!” and we all broke out laughing. And I couldn’t help thinking, “laughter through tears is my favorite emotion.”

See for some reason (that I still am not sure of) this group of ladies who have seen each other through a lot of life’s up and downs decided to have a movie night and watch Steel Magnolias. I think it had been so long since I had seen the movie that I had forgotten how wonderful and funny and well-acted and heartbreaking it is.

The Sally Fields scene in the graveyard is a truly astounding performance. One that I don’t think I ever really understood until now. The rawness and vulnerability of her grief and her uncontrollable anger at the unimaginable injustice of losing a child cracked open a part of my heart that I have been trying very hard to keep closed.

Because grief is deep. It can feel like a giant pit that is too scary to look into because you can’t tell where the bottom is, or even if there is one.

I said for a long time about Mark’s death that I felt like there would be a time when it gets worse before it can get better. I have been swimming really fast and hard lately but I think maybe that time has finally caught up with me. It’s why I haven’t posted in so long…sitting down to write is a form of therapy for me. And as with much of therapy it doesn’t work unless you allow yourself to go to that deepest level.

And being there, dealing with that, feeling those feelings, just plain sucks. It is the fucking worst, and I have been doing everything I can not to have to.

But here I am… crying into my computer with a glass of red and a box of Kleenex. Waiting for the laundry to be done. Because one of the greatest proofs that life marches on despite the unimaginable is that there will always be more fucking laundry.

Yesterday I broke a little. And maybe that’s good. My spine of steel allows me to get through just about anything, I have excellent coping mechanisms that have kept me going despite the constant barrage of difficulties that have been hurled my way these last 6 years.

But that spine that holds so much is heavy to carry around. I have knots and back pain that I am working on releasing through medical massage and even Reiki. But my body is screaming at me that I cannot carry that weight for much longer.

So how do I lighten the load? I think I need to lean on the people in my life who can help me figure out how to make space for my grief. And my anger- which most of the time I am unwilling to admit that I even have.

Today I snapped at one of my girls for something dumb and got off the phone with a friend who was only trying to be helpful by rudely saying, “I need to end this conversation- you are just stressing me out and I can’t right now.”

I’m not mad at them or my husband who has chosen the worst possible time to come down with the dreaded man cold. I am mad at the fact that life is really fucking hard sometimes. And not fair. And that we loose amazing people we love and that we have absolutely no control over any of it.

Yesterday marked the one year anniversary of the death of my friend Amanda. And I loved that woman. She cared for her husband and sons with a fierceness that had her battle for every minute of the seven years she lived with cancer. We were instant friends who met waiting for blood results in a chemo room. She was kind and funny and stubborn and just a damn good person. And I am mad that she didn’t get to stay longer in this world and that the last months of her life were agony.

When I visited her just a week or so before she died she had wasted away to nothing and was in constant pain and in and out of consciousness. But she still held my hand, and laughed with me, and I got the chance to tell her I loved her and had the blessing of a moment in which the haze from her eyes cleared and she told me she loved me too.

So I weep for her. For the unimaginable- to know she was dying and having to leave her children. I weep for her husband who is a such a good man. And for her two boys who I think are destined to be spectacular people because of the heart of the woman who raised them, but who don’t get to grow up with her there.

And I prepare. Because I know that my grieving season is just beginning. We are almost at the first anniversary of my brother’s death. Then I go into my first Thanksgiving and Christmas and New Years when I have to really begin to understand how to live with a giant hole in the fabric of my family. Then before I know it will be the one year anniversary of the death of my friend Annie (who was my reason for starting Mommies In Need.) And shortly after that the 30th birthday of my living brother and the reality that his twin will never hit that milestone.

So that’s a lot.

In a few weeks I will be gathering with my family to acknowledge the fact that it has been an entire year since Mark shared this earth with us.

That is so hard to comprehend because it seems both like it was just yesterday that we were learning he was gone and like it was a lifetime ago.

I have only recently been able to start looking at pictures of Mark as a child because for some reason it is those images of him as the sweet little baby that I welcomed home from the hospital, or as the little boy who would fall to the floor in fits of laughter at shows that he had already seen a million times that make me ache most profoundly.

November 1, 2018 will find me mourning the loss of Mark and also celebrating him with the things and people he loved. We are doing a small Day of the Dead gathering in his honor with my immediate family- after all he had a huge Sugar Skull Tattoo so that seems right. We will enjoy his favorite food (which happens to be Mexican), drinks (there will be much Jack Daniels,) and I might even try to cough my way through a Malboro Red. I am looking forward to the chance to gather with those who loved him most and talk about him. But I’m also on emotional overload.

Don’t get me wrong…there is a lot of good in my life right now. I am healthy for the first time in a long time, I haven’t needed blood or iron in almost 6 months (which means that horrible surgery worked!) My kids and husband are a constant source of joy in my life, and there are fantastic, game-changing things happening with Mommies In Need that I can’t wait to tell you all about.

And I have dear friends, so many of you, both in Dallas and all over the world, who I know love me, and pray for me, and who will show up for me time and time again.

But if you see me and I seem off, or not myself, or I don’t respond to your email/message/text/call, forgive me. I’m probably just trying to make my way through the unimaginable.

“There are moments that the words don’t reach

There is a grace too powerful to name

We push away what we can never understand

We push away the unimaginable.

If you see him in the street walking by her side, talking by her side,

Have pity,

They are going through the unimaginable”

– “Quiet Uptown” from Hamilton

One Breath at a Time

It has been a just over a month since my world was forever changed. On November 9, I found out that my 28 year-old brother, Mark, had passed away suddenly and tragically.

About a month before that my friend Amanda died after 7 years of treatment for her metastatic breast cancer and a prolonged time on hospice care. When Amanda passed away, I was sad, and I missed her, and I was broken-hearted for her husband and her sons, but it was hardly a surprise. I had been visiting as often as I could through her last months and I saw her withering away. The last time that I went to see her, I held her hand, I got a brief moment of clarity from her drug-induced haze when she looked right at me and told me she loved me and I was able to say the same to her.

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The last picture I have of Amanda and I together.

On the drive home I sobbed and I prayed that she would let go, that she would be released from her unimaginable suffering and finally be at peace. When I got the news of her death, I was in the middle of writing an angry rant that I will probably post eventually, but I stopped and cried for a while. I had been actively preparing for her death with my therapist (as much as you can prepare.) Every time I saw or spoke to her I knew that it might be the last time and I always ended our visits with that in mind.

I first met Amanda 3 years ago when we were both in the infusion room getting treatment. I was happy to have her as a friend, and to be able to provide free childcare for her through Mommies In Need. Three days after her death, a fantastic group called Resounding Harmony was doing a benefit concert for Mommies In Need and we decided to dedicate a song to her and to light candles in her honor. I was the one who was going to deliver her tribute. At the dress rehearsal I was a mess. I barely got out the words I had written for her memorial and then I sobbed through the whole song.

But the next day for the show, I called upon every bit of strength that I had and I was able to speak for her in a way that I will always be proud of. I had no idea that event was a sort of dress rehearsal of it’s own.

When Amanda died I thought I knew what sad was. It turns out I had no idea.

I now know that there is a level of grief that is so deep it physically hurts. I know what it is to be shocked with news that knocks the breath out of your lungs. I know what it is to fall to the ground crying because you cannot keep yourself upright. I know the panic that comes when you feel that if you allow yourself to start crying you will never be able to stop.

When my brother died, my parents were extremely smart about how they told me. They called my husband and had him come home to be with me as I heard the news. When he said he was getting out of work early, I didn’t think anything of it at first. But when he got home, he guided me to the couch and he said he had something to tell me.

At that point I got this strange tunnel vision- I knew what he was about to say would be bad and my mind was racing as to what it would be. My first thought was that one of my grandparents had passed, but I had talked to them earlier that day, so that didn’t make sense.

When he said, “Mark is dead,” I did not understand the words that were coming out of his mouth. I went into a sort of shock in which I laughed and said “No, that’s not true.” He had to tell me five or six times until I could put it together in my head.

It’s funny how some memories are so blurry and others so clear. I don’t think I will ever forget how that felt as I began to comprehend that my baby brother, the sweet little boy nine years younger than me, whose diapers I had changed, who I read all the Harry Potter books out loud to, who is a part of most of my best family memories, was no longer on this earth.

I don’t think I have fully accepted that I will never see him again in this life. That still feels too big to even start to process.

The details of the days that follow are more complicated and personal than I can even begin to share here. I will say that I am forever grateful that my other two siblings and I live in Dallas and that we are all married to exceptional people who helped us get through the worst of it. We were all able to be together at my parents’ house as we stumbled through that first day. Grieving with people doesn’t make it any less painful, but it does make it a little less heavy. My family and I helped carry each other through the moments when none of us would have been strong enough to get through it alone.

As funny as it sounds, I have a lot to be grateful for from that period. Grateful that my family could be together. That I have two amazing and hilarious 5 year-olds that I can snuggle all the time. That a friend of mine is married to a funeral director so I had someone to call in those first hours to help us stumble through the practical things you have to do when someone dies unexpectedly. That I have a pastor and a church community who were present when I needed them. That one of my dad’s best friends heard the news and put together a celebration of Mark’s life just three days after we found out he was gone. That a wonderful musician and family friend was in town and sang in Mark’s honor. And that I had that dress rehearsal.

As we talked about what we would do and say to honor Mark, I volunteered to speak for him. When my parents asked if I was sure that I could do it, I said yes. I had gotten through my tribute for Amanda and I knew that it would be a thousand times harder but that I could also do it for my brother.

Me and Mark
This picture is from a few years ago but is still one of my favorites of Mark and me.

And I did. I read a beautiful message from my father, a poem my mother selected, and wove stories that my parents and siblings contributed into a speech that I think was just right for him. We ended it with a toast and a shot of Jack Daniels because that felt like something he would have thought was pretty badass.

I held myself together through the whole thing and then had the blessing of that beautiful song in which I let it go. I cried and was held by my loving family as we continued to share that grief.

So how am I now? Well, it depends on when you talk to me.

For a few weeks after we lost Mark, I went into a hole and pretty much didn’t talk to anyone except my immediate family. My friends texted and called and emailed but I couldn’t face talking to anyone. I have slowly started to join the world again, so there’s progress.

Sometimes I am pretty good. I am back at work. I couldn’t get myself motivated to start up again for a long time. But then Mommies In Need got applications from two new families desperately in need of help. I couldn’t get it together to do admin work or fundraising, but being able to help someone else going through a terrible time in their life made me feel just a little bit better.

Sometimes I am a good wife and parent. I can pick up my kids from school and play with them and talk to my husband about all the stuff we have going on in life. My patience is pretty limited though. I get irritated easily, I snap more than I would like, and I haven’t cooked an actual meal that I can remember (not that I am normally much of a chef, but right now even boiling water is sometimes too daunting a task.)

But then there are the times that I am so sad. So deeply sad that I can’t function. Or when I feel like a zombie just going through the motions. When I walk around a store for an hour and then leave without even buying anything because I am not actually seeing the store, I am just keeping my body busy while my mind checks out.

I am going to the holiday parties, and I manage it pretty well when I am around people I know and can be honest with. But I just can’t with idle chit-chat. I found myself at one party just sneaking off to a corner with an XL glass of wine because I couldn’t face anyone.

I will tell you one thing I know for certain. I will get through this. I am a Survivor after all. I get into dangerous territory when I spend too much time thinking about how much I have been through in the last six years and wondering how any one human being can be expected to cope with the constant blows I have been dealt.

But then I stop (maybe take a Xanax) and breathe. Another thing I am grateful for is that all the shit I have been through has taught me how to manage the worst moments in life. I have learned that you have two choices- curl up in a ball and die or keep going. I will always choose to keep going.

And that looks different depending on where I am. Sometimes I take it one day at a time, or one step or a time, or one tiptoe at a time, or one prayer at a time. And when it is really bad, when the sadness threatens to envelop me or I feel myself coming to the cliff’s edge of an anxiety attack, I get through one breath at a time. Take one breath and then another and keep moving forward. If I can remember to do that, I know that even this I will survive.