I have been a birth doula for almost 7 years now and have attended around 250 births. I signed up to support women and their families through one of the most amazing experiences of a lifetime and to hold them up with my own body and soul through their first moments with a new human being.
I prepared myself for the toll it would take on me. Exhausted muscles, worn out limbs, sleepless fogs and aching of my heart from things unexpected.
You know what I did not prepare for? The trauma and hurt that I never expected to walk so many families through?
The devastation of “Birth Firsts.”
What is a Birth First?
It is the stealing of that moment, the first time it is said…
Our child is BORN!
That moment when new parents, whether it is their first, last or any in between, get to tell the world that their child has made it into their arms. For many it is a huge moment… like the kiss at the end of the wedding ceremony. For some, they get the kiss out of the way and get on to the party. Others have waited for that moment, that kiss, and dreamed of it their entire lives. Neither is wrong, but it depends on the couple themselves to decide how important it is to them. Not the guest. Not the friends and family.
As a witness to births, I see couples go through deciding how, when and who to tell first. It can be a huge deal to them, or sometimes not. Often there are some politics involved, especially with the variety of family antics we all experience. At times there are boundaries that need to be respected, maybe some family and friends need to be held off for awhile so the new mom and dad can feel ready and confident to face others after a private time of “cocooning in” with their new little person. Some moms are taking photos and posting it to Facebook within 30 minutes, some wait until 2 days after the birth.
All of these are within their rights. They deserve to make that decision. Often they don’t get to.
This is what I also get to see. The moment they realize that someone else has trumped them. A friend or family member has let out the “Birth First”. That private photo texted to two people is suddenly sent to an entire email list or posted on Facebook and tagged.
It happens so fast. Within minutes, cell phones are ringing, text messages pinging and Facebook page is blowing up with congratulations while mom still hasn’t had a chance to catch her breath and dad may not have even held his child yet. The moment was taken. They can’t get it back.
Often the stealing is unintentional. It can even be well meant and come from a place of pure joy and love for the family. Actually, new grandparents, aunts and uncles are high in numbers of guilt on this one. Their joy is genuine and the harm was not intended. Yet it is there. I get to be in the room and see the hurt and betrayal felt by parents who don’t get to announce their own child to their friends. They are almost always hurt, they feel cheated. They are blindsided. Trust me, intentional or not you do NOT want to be the one to cause that for them.
Over the years and families I have learned a great trick. You see, as a birth professional, I am even bound to not talk to others in the birth community. I follow HIPAA guidelines. It gets tricky when someone gives birth and their three friends, who I also served through their births, want the inside scoop. My answer is to always smile and say, “They were amazing and the birth was beautiful. You should ask them about it!!”
It’s not my story. Not my glory. If you have had the honor of being in the birth room or waiting room for a birth, I encourage you to do the same. Respecting their privacy is a great way to show gratitude for the honor of being included in the experience.
True, some parents aren’t that concerned about it. They don’t mind you telling for them. They may be relieved to have one last thing to do and feel honored that you are so trigger happy that you post before the cord is cut!
ASK THEM FIRST. Be sure that you have clear permission to talk to others, text others, post to the world. If not, DO NOT.
So here is a little help for you.
Birth Announcement Etiquette:
If you know that someone has given birth, but they have not announced it THEMSELVES on Facebook it is inappropriate to congratulate them, thus making the announcement that they may have been withholding. It doesn’t matter if you are family, friend, coworker or part of their fan club.
You are not Perez Hilton. No one needs to “FIRST” their birth. Please wait until the new parents themselves have shared the information to congratulate them. It is an amazing gift to respect their time together.
Respect their privacy, please.
That is all
Did you like this blog post? Want to read more of my thoughts?Follow me on FACEBOOK or TWITTER!
I had to come up with something, even if i was just going to share it with myself. Something poetic if only to justify my day to myself.
It’s not you, it’s me.
Ruckus destroyed a project.
The Brainiac and Big Sister had been working on for hours.
This happened while they were both downstairs working on their responsibilities in our home… one ironing and one loading dishes. They were being GOOD, and obedient, pleasantly working without complaint. They didn’t deserve their work destroyed yet here we are.
Same story, different day.
So I go through the routine, but he doesn’t get it today any more than he did yesterday or the day before. There is no remorse because there is no empathy. There is no click in his brain of understanding that he has ruined their work or why they are upset. He needed those legos. Now. That is all that exists to him.
Ruckus is a sensitive kid. He is caring and loving and full or emotions. They just don’t work on the same level of awareness that the majority has. So we work on this. Often.
How do we do it? How do we show the heart of the matter to these little ones who don’t have the capacity to put themselves in the place of others. They don’t “do” outside their own box well. Their box of understanding is as intriguingly limitless and bursting with potential as it is small and restricting, to those of us who can’t see inside of it.
His heart is there.
His feelings are there.
They are boxed up.
He sees what he did. He recognizes that it was not ok. It is done and he has moved on to something else. His logic tells him to do the next thing. The whole incident is outside of his box now. It’s up to me to work it back into his frame of reference.
So we worked through that today. For awhile. I see glimmers of hope and I know we’ll get there. Not today, not next week, but I have seen the amazing other side of these people, the ones who surf a different spectrum of viewing life. I know my son will turn out as a wonderful man. God made him to be. Without a doubt.
It just requires some serious dedication from everyone in our family and everyone around us. To work inside a box, and also nudge him outside of his box.
Still, sometimes as moms of spectrum surfers we need an outlet, if only to blow off some steam in a different direction that doesn’t point toward our kids. Steam can burn. We all no that.
We need to let it go in a way that doesn’t close them in.
Back to my opening sentence. I had to think of something. Something to decompress and let go of this situation and the angry response that well up in me, threatening to ruin any headway we have made with the Ruckus.
It felt good and I’ll share it with you for a little snort and chuckle. Here it is. My garbled attempt at throwing together a few words, with no time for rhyme or reason. Just words. My attempt at being one of those clever wordsmith types who throw together phrases that say something important, but not.
A Meme Artist, if you will.
With snorts and the spitting of coffee and rolling on floors type. I want the time to do that. That may never be me. I’m not that funny, yet here is today’s offering. My 15 minutes of free time:
Teaching empathy to an autism surfer is akin to Climbing an Eiffel Tower constructed entirely of Legos One leg glued to the other with a mix of glitter glue and E6000 adhesive
Flopping along like a mermaid out of water, A weighty sloth on my back.. arms wrapped round my neck twice
Little paws flopped heavily over my eyes.
This would happen, of course, the only way it could,
With my hair bedraggled, no makeup, and teeth unbrushed
Wearing the stained, beat-to-threads kinda dress that is
Only meant to be seen around the house dress, While suddenly finding my nostrils plugged with the baby wipes
The ones left over from the last time I changed my 8 year old’s diaper,
Which was a really bad one.
Because as you know, if you know me at all, I always smell poop. Every where I go. I smell it.
I was not sure if more than five people would read that last post. For someone who hasn’t read what I have put out over the past, I am aware that it doesn’t make sense. That it may not seem like a big deal or need to be said. For me, it did.
Also, I felt strange and awkward all day like someone who passes gas in a room full of people and then has the audacity to raise their hand and claim it. Yeah. I did that.
Then they stand there bashfully waiting to see who will gawk and head out the door and who will give the high-fives.
So, if you are reading. ((high-five)).
I meant to write that blog post months ago. In fact, we had a plan for me to stop taking births last December and prepare for adding foster children to our home. In the plan was freedom and time to write again. I stopped taking births, for the most part, but then life happened and after all these years of waiting and preparing….
Children didn’t happen last winter.
It wasn’t God’s timing, even if we had planned it with Him in mind, which we did. It wasn’t going to happen on our timeline.
What stinks is everyone and their sister’s best friend and cousin asking how things are going. No, it doesn’t bother me that they ask. It’s being told one more time,
It’s ok, honey… All in God’s timing…
It feels so dismissive, doesn’t it? There is nothing left to say once someone has played the “God’s Timing Card”. As if nothing else matters and nothing else can change this.
That’s because nothing else does and… we can’t change this. We really can’t.
These are not the words I’ve wanted to hear. In the past I must admit that I have felt good about my ability to adapt to this “God’s Timing” business. I have practice. Patience may not come naturally to me but I’ve had serious learning sessions.
I tried to marry a guy at nineteen. We had our future planned. I didn’t marry him until we had two years apart, not even knowing if we would speak again. We were married at twenty-three. He still is everything I needed. No way did I understand what I thought I did when we were younger. The timing was better than mine.
I tried to have a natural birth once, twice, even an third and fourth time. That first baby was breech with her feet down and would not budge. The second time all was well and only VBAC was discussed, until a car accident that injured my back. Permanently. That next time I was pregnant for almost forty-three weeks. My last, I labored for forty-three hours, fourteen of that on pit. Still, all 4 of those kids were c-sections.
I was the one who wanted homebirths. I was up for having 8-10 children. Surrender makes us whole and changes who we are. I would never be who I am if I hadn’t handed the timing of my other children, and all expectation over to Him. He knew better and His timing prepared me to serve and encourage other mothers. I could share my story of surrender and how amazing and powerful letting go can be. His plan was what I needed.
We bought a house that was practically unlivable. The plan was to fix it up and flip it to make a profit… to move to a farm with many babies. Then Dave Ramsey happened to us. He hit our budget like a wrecking ball and we have never been the same. We are ten and a half years out and still building this house bit by bit. With cash.
We’re so close. I’m going to share about that soon. I can’t imagine having done this any other way, now that we are this far in. I am blown away by the tiny provisions that have kept us present and open with this house project. We truly are Making Room For More.
We attended a church for eight years. In fact, we moved into the city and bought this little hovel to be a part of the building team to start it. We were invested. The last four years of that, I knew we didn’t belong there. We love the people. We still visit and hold them dear. But I knew to my core that we were not where God wanted us. I tried to leave. I begged my husband to leave. I had to wait for him to feel it, too. It took four long years. Four.
The thing is that we never would have ended up where we are, if we had left when I asked to. I felt anger and frustration, and that is what made me want to leave. I didn’t understand that was God asking me to look for more and that it wasn’t about the situations as much as His plan to make me uncomfortable so I would give up on looking at people and search for the bottom line of finding Him. We joked about trying any and all kinds of denominations, in hopes of finding what He really wanted. If I went back all those years and told myself that it would be Catholic… I would have side-eyed myself and ran away. For realz. That took time. I am thankful for those years. We are where we are called to be.
I’ve done surrender in so many ways, with a heaping serving of Extreme Patience Makeover. I have felt like a veteran of this “all in God’s timing” business. I thought I had it down. Heck, I even thought I had reached a point of enjoyingthe unpredictability of it all. I was all for it.
I was wrong. I’m still learning it. Still growing. Because in this case, I don’t like it.
We had expected to be ready and approved over the last winter for adopting through DFCS. At least we had hoped to be. The reality is that we have gone about this in such a different way than most foster families would. Our big plans and preparation are what have dictated this longer timeline.
It’s the house. Again.
You see, we started with a 2 bedroom/1 bath bungalow of 1150 square feet. We have added 3 bedrooms, 2 full bathrooms, an office, a laundry room, a reading nook and a storage room. It’s substantial. It totals 1350 square feet in addition to the original house.
Why does this matter? That’s not about the adoption…
But it is.
The addition is new construct. For us to be approved to home foster children or adoptive children, we have to have a Certificate of Occupancy from the city. See, that would not have been a big of a deal if we had simply been renovating a home. Oops.
That is why you may know people who have done this and did it quickly. That is why our process may look confusing, long and drawn out from the outside looking in. Even dramatically so.
Yes. I am aware that I can be dramatic. Especially about this.
Once we have that approval, we are likely to have children within weeks, even days. It’s just getting that little piece of paper, and that requires passing every inspection, even the big final one. It even excavating/landscaping the back yard. Really.
I have friends who have listened to me rage about this. I do’t know how they put up with me. I try not to, but I feel the pout and whine come on like an expectant mama who just wants that wait over and to feel the baby in her arms. I haven’t been doing the patience as well as I should.
Thankfully, I have good friends. They are so gracious.
Ultimately, we really are not that far off track. I should be thrilled. And I am. Really I am. God’s timing seems to be about a year after what we pictured. That doesn’t sound that bad, right? Yet it has been an up and down year of releasing our plans and trusting him, only to pick up the timeline again and forge forward with everything we have. And I mean everything.
I am Verruca Salt. I want it NOW!!
It’s not that I just want my way, and I see these children and something for ME. It’s not a selfish need for another baby. It’s that, just like a woman who is growing a baby… I am expecting.
In August of 2012 I had a earth shaking realization, a moment that hit my like a Crossfiter’s biggest kettlebell and settled with a vice grip on my heart that still remains.
I was sitting with Lil Bit playing and dreaming of her as a big sister and what that would look like. That is when it happened.
I did the math.
As I held my three year old, I realized that if we were looking at welcoming a newborn and 2-3 year old in 2 years… Now mattered.
Suddenly reality ran through my veins like an earthquake. Thunder and lighting, racing pulse. Eyes wide open.
My. Child. Could. Already. Be. Born.
My heart almost exploded and the room spun around me. It was all at once as thrilling and as terrifying as seeing two lines after peeing on a stick. It was real. Once I knew it, I could not undo it. A fierceness came over me that moves me forward. The whole family feels the empty space of where those children will be.
My prayers changed. I pray for our children differently. Feverishly. I hold my breath on holidays wondering if they have been born, if someone said “I love you” today. And if they are somewhere, who is holding them? Is anyone? It’s cold out, are they warm? Are they hungry?
And the one that really gets to my mama heart,
Is someone hurting them?
This is hard.
It is one thing to be waiting on a baby who is safe and sound in my uterus. Now, I have no idea. In all reality, considering the statistical odds… our children are not likely to be safe and sound. We can’t do anything for them, but get this house done.
We have chosen not to go through lists of children available for adoption. There will be no adoption books to look at, and our family won’t make a cute display of ourselves to show. It is a completely different process. We don’t get to choose.
We will prepare our home to treat children like gold. Like the royalty they are, as precious little souls with potential for greatness.
We will get a call and have only hours to pray, decide and prepare. We will take who we are given. We will fill the need.
But in doing that, we will be opening our arms to children who are hurt. They almost HAVE to be hurt to end up in the broken system that we have chosen to go through. The system that will bring them to us. They will be removed from their natural parents. They won’t have a choice. Those parents may not have a choice.
What keeps me up at night, scheming for ways to get this house done faster, is knowing that pain and hurt will happen, for them to actually make it to our home. Pain, rejection, confusion. Abuse. We can’t save them from that. We just have to wait to catch them when they fall into our open arms.
And it rips at me heart, but only in a way that keeps me bringing it back to God and begging him to get with the plan and hurry up. But he won’t and I know that is best. He knows that it’s best. I need to get with HIS plan.
There is some incredible good in the last year of unexpected waiting. Now that I’ve put away my pouting, I’m aware that we needed this.
Two years ago we were completely focused on the adoption aspect of this. Now our hearts have shifted to openness for fostering to be the main goal, always with the hope that adoption is welcome. That is a huge shift.
We are prepared to lose these children.
Do you want to know why?
I realized that they could be alive. They were having a life that I was not a part of and I could not be there for them. Do you know what that means?
It’s not about me. It’s not my story. The story belongs to these children.
It. Is. Their. Story.
So what will it feel like if we have children who are returned to their biological families after six months… after a year… what will we do?
We will cry. We will ache. We will thank God that we got to be a part of their story, because someone was going to be.
If their story was that they would go back, it’s not about us. That is out of our control. If they were going to have that six months or a year somewhere, anywhere… it could have been with a different family. And it could have been horrible. Maybe they will be returned to an environment that is still tragic. Maybe their future will still hold abuse that we cannot protect them from.
They still had that time. All we have is that time. We can’t control their story. We can only present ourselves as available for them and hold an openness to loving on all terms.
Short term or long term. We are wide open for that.
These are the things we have learned, that we have processed through in this extra time. We’ve wrestled and prayed. We’ve waited. We’ve built a home and we are almost there.
We can now predict to have children in three to six months.
And it is safe to assume that they are alive now. Someone is.
So please don’t wait. Pray with me. Pray for them now.
And pray for all the others. The ones who won’t fit into our home.
Pray that we get this together and ready for them. Pray that we will be strong and open when the call comes for children to be at our door in a few hours.
Because, that’s all going to happen.
In God’s timing…
Did you like this blog post? Want to read more of my thoughts?Follow me on FACEBOOK or TWITTER!
No, how do I pick back up. What do I pick back up?
That’s the problem with juggling hats, you see. I have so many and I love them all. I hold them close, I spin them in the air. I store them in the closet. And sometimes, I crush them because hats do crush so easily, after all.
I don’t know which one to wear for you you. What comes first? What do I put up in the closet for next season? Actually, why am I wearing a hat when I hate the way things feel on my head?
Running through my head.
For months now. Years, actually.
Stepping out in a funky hat takes some serious chutzpah.
How long does dauntless take, to become a habit?
Over the years I have had six different blogs. They have all been topic specific and I have never just blogged as me, with my name. As open and honest as I have always been, putting my name out there was something different. I orten did it anonymously or with a pen name.
She was braver than I, always.
It has taken until now to give myself permission to embolden from the ground up. Let me tell you why.
I have blogged off and on for several years. Behind a keyboard pouring out my heart, vulnerable to the point of flooding my face with tears and snot, only to panic and take it back frantically making those juicy tell-all posts private.
I’ve bared my soul, my history, and my body image. Then made it anonymous because it hurts.
It hurts to have women and moms tell me that I inspire them, and then have the someone I see day-to-day scoff and tell me I’m ridiculous. It’s that one that gets me, stabs and slays me, no matter if a dozen thank me. Why am I so weak?
It gets tiring to be the elephant in the room, especially when you’re the one willing to unpack your trunk. Haha…trunk. See what I did there?
The more I mull it over, the less likely I am to ever do this. So, I’m gonna be real here and just…start typing.
But it’s ok. I’m ready.
I am not going to do fear and loathing anymore. I just won’t. I’m not going to make excuses for how people feel and worry if I am just “too much” for them. They did not even ask me to. I put that on myself.
I’m going to hash out a few things right now, before I start the baby-steps-back-into-blogging. I’ve been holding off on letting this out, trying to decide which way to go, what route to write…
I’m going to start with answering how I feel about me, before I put me in front of you on a silver platter to pick apart and mull over…in case anyone cares to do that picking business.
“You’re too intense.”
I am thankful for my God given intensity. I’m sorry if it stuns you and makes you uncomfortable. Nine times out of ten I’m thanked for being encouraging and challenging growth in someone. I refuse to take that one outlying opinion and mull it over in my head for days as a failure anymore. I’m not going to spend so much time if I have been wrong all along, over one opinion. It’s ok. You’re allowed to read someone else’s blog. From now on, I’m me. All of me.Take me or leave me. Really… you are welcome to leave before this gets real. And I am not kidding here. Please. Feel free to read someone else’s blog.
“You’re too passionate.”
I am blessed by the gift of passion. Once in a small group we were supposed to go around the room and say what we are passionate about. I wasn’t sure. The minute I said that out loud someone piped in, “You are passionate about parenting and family!” “You are passionate about supporting women!” “You are passionate about sewing and clothes!” “You are passionate about cooking!” “You are passionate about homeschooling and DIY stuff!”
Let’s just call it, y’all. It’s not that I have one thing. It’s everything. I. Am. Passionate.
There ya go.
Passion for my family. I am blown away by my husband and children and aim for growth in every day we have together. I’ve blogged about parenting and love sharing that part of my heart. I do that because we all can do it better, not because I think that *I* do it better. I want to share that walk with you and with all the parents swimming through the sea of controversy in parenting. Staying above water is a struggle and we are constantly hit by tidal waves.
I do not share about parenting because I am bitter. It is because I am learning, and I love to learn! My mama taught me that. I do not challenge parenting standards because my parents were horrible. I parent differently than them. I absolutely do, unashamedly. When I blog about it, it has the potential to hurt feelings. They have told me so, and I absolutely understand why it would be uncomfortable. I feel confident enough to discover new ways because they taught me to. I owe that to my parents for homeschooling me and teaching me to teach myself. They are as amazing as they are imperfect, which is where the beauty lies. By that they have taught me that I can be equally imperfect and amazing, in being me.
Passion for the beauty of a woman’s body and its beauty in style, in pregnancy and in birth.
Over the years I have had the great job of encouraging and supporting women to have a birth surrendered to truth. Truth is different for each birth. But don’t act like I’m a werewolf at a babyshower. Please. I’m ok with you loving your birth, however it was. Be ok with me encouraging others toward something that may be different. I’ve seen about 250 of them over six years. If there is one thing I know, her birth is not about YOU, and it’s not about ME. So… let me speak.
And then there’s my whole modesty mantra. Look… I’m basically a modest nudist. I like to be naked. But my spirit won’t let me. God won’t let me, ya know? I follow that still small voice that tells me what to wear. I’m going to tell you about it, and why I will champion the cause of modesty, yet dress as a “Modesto Incognito”.
Passion is a powerful part of my faith. Passion has lead me to places from which fear would have kept me. Passion left me dissatisfied with a mediocre faith based on popular Christianity and drove me to stand firm in searching for the Truth and the Light. It brought me to somewhere I never, never expected… The Catholic Church.
What?!?!? Did she just say Catholic? She did. She said it. She did it. She’s Catholic? What the what? Since When? It’s ok. I love Jesus. Jesus loves Catholics. Oh man, she’s gonna talk about Catholic.
Yep, I’m going to tell you about that… because it’s Jesus. I love to share Jesus. Stick around or don’t. That’s totally up to you. I free you from it if it bothers you. I mean, it’s all Jesus and you can read and not be Catholic… but I am. I found my freedom in it. So much freedom that it blows me away.
“You are so judgmental… “
Please understand that I make judgement calls. It’s what God asks of us, and I prayerfully try to toe the line of judging sin and not the heart and soul of a sinner, other than myself. I’m not judging you by making a judgment call on what I believe to be a healthy standard. My choice is not about you. Also, I constantly encourage others to search their hearts and find that sound judgment that is there. It’s not what you think it is, and our culture and society is doing everything they can to destroy our good judgement.
“Nobody can make everything from scratch and do all that healthy stuff. I could never do what you do. “
Really, that’s fine. I can’t even do what people think I do. I love to make things myself. I also love ordering pizza, and I miss that option in my life. So there.
I love treating bodies well, nourishing them with whatever is wholesome and caring for them on a daily basis. But you may not believe me. You may think I’m a liar because…. gasp….
I had WEIGHT LOSS SURGERY!!! Give me a few weeks and I’m going to explain to you in about 100 ways why that was NOT the easy way out. I promise. It’s hard. Especially when you’ve been known as a health freak for years…Yes, me. I did this… gasp…. Just wait. I’ll tell it all.
“I can’t believe you would tell people that! You know, that thing you just said.”
What, the truth?
Listen, I’m all about healthy boundaries. As a professional birth doula I am trained and experienced at following strict guidelines and HIPPA privacy regulations. It’s second nature. I was an HR manager with 900 employees when I was 22 years old. I can be diplomatic and discrete. I can poker face to the enth degree. That doesn’t mean that I can’t share failures and lessons I’ve learned, myself, in hopes that the experience can be used to help others. It’s part of who I am. To share. To support. To hold myself open to ridicule so that someone else can feel that they aren’t alone. I do that. Often.
I could go on and give you 100 things people have said to me about things I have written in the last nine years. I have the rebuttals ready. I think this is enough for you to get the idea, right? Right.
I’m starting fresh, from scratch and that may be with five readers instead of what I have enjoyed in the past. If you are reading this and you can see where I am going, it is worth it to me.
You want to know what all of this rambling is about? In a nutshell, it is a coming out in the light of day. I’ve spent years trying to hide ME behind a purpose or topic… every. time. I. write.
Because the real me, the whole me, was too much for people. Because Jesus wants us to see Him, not us. So I had to hide that for Him, right? Isn’t that required?
I named blogs different things and kept them separate. At one point I had 5 at once, compartmentalized by different topics so the topic was what you saw. You aren’t supposed to see me.
I can’t maintain that. I can’t hide behind the banners and the goals anymore and say that they are what is important and I’m to be as invisible in the process as possible. I’ve refused to use my name in most of my blogging. I thought that was doing “Humility” correctly.
It was letting the fear of others cripple my heart. I let them hold back the baring of my soul, and if there is one thing I have known since I was a child, it is that God gave me a soul that is intense and passionate… that loves to DIY for everything… and he wants me to bare my soul. He gave me a crazy one… to share it. Yes.. bare… naked. Like that.
I was afraid.
Now I am not. So this is all about taking a deep breath and for the first time presenting me. All in one place. All my randomness. All my depth. It’s ok for my blog to be about me. Who I am is ok. That can be useful.
Most of all, I want to share all that I’m meant to be… with you. To believe and know that I AM worth seeing and knowing. I don’t have to hide behind the words that flow from me, yet I don’t have to give them up to be something that I’m not. I can do both.
And if I’m worth reading.
I am worth seeing as a whole.
This is a letter written by someone recently diagnosed. It is a beautifully open letter that shows the struggle emotionally with accepting this as “real” that I have been through myself. Her description of the struggles is so raw and real to me. I live her experience, too.
I wanted to share this because it was so powerful for me to see someone else’s response and experience with their friends and family. Our experience and emotions are different. I am so blessed with the level of support that I have and find myself able to offer grace to those who don’t get it it. It’s not my grace and forgiveness because I know that I’m not that strong. But it’s there when I’m judged and misunderstood and it keeps me strong to let other’s responses go. It’s not my job to convince them that this is real.
Anyway, please read this.
LOVE LETTER TO NORMALS
by Claudia M.
Here is my letter written to explain to family and friends what it’s like to have fibromyalgia. It won’t work miracles: it’s hard to understand our illness from the outside looking in. But it is a start and can open the door to important dialogues. You are all welcome to use it, either as is, or as a basis for writing your own. Remember that you have a responsibility to tell those close to you what is wrong and communicate as clearly as you can how you feel and what you need. The best time to do that is when you are not upset!
Fibromyalgia isn’t all in my head, and it isn’t contagious. It doesn’t turn into anything serious and nobody ever died from fibromyalgia (thought they might have wished they could on really awful days!!) If you want to read articles or books about fibromyalgia I can show you some that I think are good. If you just want to learn as we go along, that’s fine too. This is definitely going to be a process. The first step is for you to believe that there is an illness called fibromyalgia and that I have it. This may sound simple, but when you hear about my symptoms I don’t want you to think I’m making this all up as I go along.
Fibromyalgia is a high maintenance condition with lots and lots of different kinds of symptoms. There’s no way to just take a pill to make it go away, even for a little while. Sometimes a certain medication can make some of my symptoms more bearable. That’s about the best I can hope for. Other times I may take a lot of medication and still won’t feel any better. That’s just the way it goes. I can’t control how often I feel good or when I’m going to feel terrible. Lots of people have been cutting new drugs advertisements out of magazines for me and I appreciate the thought, but I’ve seen them too. Look at the list of side effects and the few symptoms they help in return. Even in the best studies those expensive compounds didn’t help over half the people who tried them. No matter how happy the people in the pictures look, there’s still no miracle drug available.
There’s no cure for fibromyalgia and it won’t go away. If I am functioning normally, I am having a good day. This doesn’t mean I’m getting better — I suffer from chronic pain and fatigue for which there is no cure. I can have good days, several good weeks or even months. But a good morning can suddenly turn into a terrible afternoon. I get a feeling like someone has pulled out a plug and all my energy has just run out of my body. I might get more irritable before these flares, and suddenly get more sensitive to noise or just collapse from deadening fatigue. Weather changes can have a big effect on how I feel. Other times there may be no warning, I may just suddenly feel awful. I can’t warn you when this is likely to happen because there isn’t any way for me to know. Sometimes this is a real spoiler and I’m sorry. The sadness I feel for what my illness does to those around me is more than I can easily describe. You may remember me as a light-hearted fun loving person — and it hurts me that I am no longer what I was.
Fibromyalgics have a different kind of pain that is hard to treat. It is not caused by inflammation like an injury. It is not a constant ache in one place like a broken bone. It moves around my body daily and hourly and changes in severity and type. Sometimes it is dull and sometimes it is cramping or prickly. Sometimes it’s jabbing and excruciating. If Eskimos have a hundred words for snow, fibromyalgics should have a hundred words for pain. Sometimes I just hurt all over like I’ve been beaten up or run over by a truck. Sometimes I feel too tired to lift up my arm.
Besides pain, I have muscle stiffness which is worse in the morning and evenings. Sometimes when I get up out of a chair I feel like I am ninety years old. I may have to ask you to help me up. I’m creaky and I’m klutzy. I trip over things no one can see, and I bump into the person I am walking with and I drop things and spill things because my fingers are stiff and my coordination is off. I just don’t seem to connect the way I should. Hand-eye, foot-eye coordination, it’s all off. I walk slowly up and down stairs because I’m stiff and I’m afraid I might fall. When there’s no railing to hold on to, it’s terrifying.
Because I feel bad most of the time, I am always pushing myself, and sometimes I just push myself too hard. When I do this, I pay the price. Sometimes I can summon the strength to do something special but I will usually have to rest for a few days afterwards because my body can only make so much energy. I pay a big price for overdoing it, but sometimes I have to. I know it’s hard for you to understand why I can do one thing and not another. It’s important for you to believe me, and trust me about this. My limitations, like my pain and my other symptoms are invisible, but they are real.
Another symptom I have is problems with memory and concentration which is called fibrofog. Short-term memory is the worst! I am constantly looking for things. I have no idea where I put down my purse, and I walk into rooms and have no idea why. Casualties are my keys which are always lost, my list of errands, which I write up and leave on the counter when I go out. Even if I put notes around to remind myself of important things, I’m still liable to forget them. Don’t worry, this is normal for fibromyalgics. Most of us are frightened that we are getting Alzheimer’s. New kinds of brain scans have actually documented differences in our brains.
I mentioned my sensitivities earlier and I need to talk about them again. It’s more like an intolerance to everything. Noise, especially certain noises like the television or shrill noises can make me jittery and anxious. Smells like fish or some chemicals, or fragrances or perfume can give me headaches and nausea. I also have a problem with heat and cold. It sounds like I’m never happy but that isn’t it. These things make me physically ill. They stress me out and make my pain worse and I get exhausted. Sometimes I just need to get away from something, I just don’t know how else to say it. I know sometimes this means I will have to go outside, or out to the car, or go home to sit alone and that’s really all right. I don’t want or need you to give up doing what’s important to you. That would only make me feel worse. Sometimes when I feel lousy I just want to be by myself. When I’m like this there’s nothing you can do to make me feel better, so it’s just better to let me be.
I have problems sleeping. Sometimes I get really restless and wake up and can’t get back to sleep. Other times I fall into bed and sleep for fourteen hours and still be tired. Some nights I’ll toss and turn and not be able to sleep at all. Every little thing will keep me awake. I’m sure that’s confusing to be around, and I know there are times when my tossing and turning and getting up and down to go to the bathroom disturbs you. We can talk about solutions to this.
All these symptoms and the chemical changes in my brain from pain and fatigue can make me depressed as you’d imagine. I get angry and frustrated and I have mood swings. Sometimes I know I’m being unreasonable but I can’t admit it. Sometimes I just want to pull the covers over my head and stay in bed. These emotions are all very strong and powerful. I know this is a very hard thing about being with me. Every time you put up with me when I’m in one of my moods, secretly I’m grateful. I can’t always admit it at the time, but I’m admitting it now. One thing I can tell you is it won’t help to tell me I’m irrational. I know I am, but I can’t help it when it’s happening.
I have other symptoms like irritable bowel, muscle spasms and pelvic pain that will take their toll on our intimacies. Some of these symptoms are embarrassing and hard to talk about but I promise to try. I hope that you will have the patience to see me through these things. It’s very hard for me too because I love you and I want to be with you, and it makes everything worse when you are upset and tired of dealing with all my problems. I have made a promise to myself and now I am making it to you: I will set aside time for us to be close. During that time we will not talk about my illness. We both need time to get away from its demands. Though I may not always show it I love you a million times more for standing by me. Having to slow down physically and having to get rid of unnecessary stresses will make our relationship stronger.