Exhaustion And Equality

I am not much of a blogger anymore. I don't think it is a time issue but more of a motivation issue.

I am definitely doing things---raising four kids, preparing to become a high school teacher, trying to keep my family physically and mentally healthy throughout the Covid-19 pandemic and recent Black Lives Matter protesting.

But I find that I am more likely to sit on the couch when we are home because I have become more addicted to my phone to try and connect with the outside world in whatever way I can.

I'm not proud of that. It's just a fact. 

When the Coronavirus hit the United States and stay-at-home orders were put into place, I had recently become the foster parent of Baby Ry and was in the middle of my student teaching. In those first few weeks, I regretted taking in a new foster child because I was struggling. I was scared. But I honestly had NO idea that we would end up in quarantine. I had no idea that I would be inside my home with four children on my own, trying to juggle my own life with homeschooling and virtual foster care visits. It. Was. A. Lot. And that's ok because we figured it out and I am grateful for Baby Ry being in our home.


In January and February, we were still chuckling over the panic that would sweep with the word "coronavirus". Remember when everyone was so scared about H1N1? I figured this would be like that. And my goodness, I was wrong.

As the country started opening, I heard about the murder of George Floyd. I watched the video and cried. I watched part of the video of Ahmad Arbery and cried. I watched videos of riots and buildings burning down. I didn't know what to do or how to make sense of everything.

I tucked Nixon in to bed at night and cried. I turned on America's Got Talent to take a break from the emotional exhaustion and an amazing black singer came on who had been wrongfully imprisoned for 34 years. More crying.

The weekend where most of this was happening, I was home alone with the two babies and Nixon would watch me cry and just squeeze my cheeks and snuggle into me. I know it was confusing for my 2-year-old to watch me cry so much but I was crying for him. I was crying for everyone like him.


I look at my son---my beautiful, black son---and see all of the good within him. I want him to live in a world that sees his goodness. I NEED him to live in a world that will treat him equal to his brother and sister, even if he makes mistakes in his adult life.

You see, I am not going to turn this into an argument of whether George Floyd or Ahmad Arbery had clean records. The truth is, I don't give a damn if they did or if they didn't. 

I keep looking at my son, a child who will grow up with some trauma associated with foster care and adoption and in-utero drug exposure, and I will not promise that he will live a perfect life. I will spend my time teaching him right from wrong, expressing all of the positive qualities within him, and hope he makes good choices as an adult.

BUT IF HE DOESN'T...
And this is the key point here

I want to trust that my son will be given the same treatment and opportunities that his older brother and sister have. I want to trust that he isn't abused or murdered if the police are called on him.

I am scared for my son. I would give my life so he could live in a world that celebrates the color of his skin, rather than feels threatened by it.

I get daily compliments on how adorable he is---that blonde hair and those green eyes are uniquely Nixon---but I need people to celebrate those things about him when he grows up too.

I can do everything in my power to teach Nixon that he is loved and wanted but the truth is, if he goes out and the world tells him he is less worthy than the rest of our family because of the color of his skin, he is going to internalize that.


The past few months have been hard. I have felt isolated and scared. I have struggled with anxiety.

Luckily, I have found ways to ease some of those dark feelings through tik tok dances (not kidding) and making sure I get some sunshine every day. Before this quarantine, I had never really let the kids play in the driveway because we have a backyard. Now, we spend a lot of time in our driveway, eager to wave and talk with neighbors as they walk or drive by.

I am grateful for the good times but I am exhausted from the hard stuff.

Being a mother is everything I've ever wanted and I hope my kids understand that on the days I'm overly emotional or struggle with my lack of patience, I am still trying. I am still showing up and trying to figure this all out. And I'll never give up on that because they mean everything to me.

2019 : Surrender

It's been a few months, y'all.

So first of all---hi. I've missed you. 

It is already the 8th of January and although I picked my word a few days ago, I've been enjoying my time with my three babies and all of our holiday crazy.

So here I am, ready to write an update for you that includes my 2019 word.

2018 was the year. It is the best year we've had since divorce.

It wasn't an easy year. But it was our best one to date. 

In 2018, here are some things our family accomplished: 

• Andersen performed as a meerkat in a production of The Lion King and was absolutely adorable. 
• I fractured my toe/foot teaching dance, literally just by being kicked by a 10 year old. Darn dancers and their strong legs. ;) 
• Hayley landed her round-off, back-tuck like a freaking boss. 
• I spent February to May in a classroom at Gilbert High School, observing and tutoring for over 20 hours. 
• Leo. The brightest part of our year was getting a call on Easter Sunday, asking if I'd take a 2 day old baby that was being discharged from the hospital in 20 minutes. That "yes" has changed our lives for the better. And nine months later, he is still changing my life daily. I never knew I could love another human as much as I love Hayley and Andersen but Leo is so equally loved and wanted. 
• I took a 3 hour test that certified me to teach high school English and PASSED. 
• Hayley attended her first Nationals in California with her dance team and they were amazing, coming away with many high titles. 
• Andersen tried out and made the Drones hip hop team at Dance Republic and now says dance is his very favorite sport and that he wants to do it forever, just like his big sister. 
• I interviewed at 5-6 high schools, being turned down each time but learning more and more about myself and how to interview each time. 
• I spent October to December in three different classrooms at San Tan Charter HS, observing, tutoring, and teaching for over 55 hours. 
• I was offered a job teaching high school English and through lots of prayer, I turned it down because it was not what was right for my family at this time. As hard as that was to try and make sense of why I would turn down a job I've worked toward, I've only felt peace since that moment. 
• I got a daith piercing that has significantly helped my migraines. And after doing that, I went off of caffeine and have done really well with that! 
• Leo has accomplished rolling, sitting up, laughing, learning to make various sounds, and getting super chubby and pretty tall for his age---cause he's just an overachiever like that. 
• I finished my very last semester of school and decided to postpone my student teaching for a semester while I figure out some big decisions for my life. 
• Hayley got glasses and looks absolutely adorable in them. 
• I got to be a guest on a podcast with my friend, Emily, talking about my divorce and co-parenting and my life now. 
• Hayley turned 10. 
• Andersen turned 9. 
• I turned 31. 
• Leo stayed 0. 
• Andersen lost two teeth. 
• Leo got two teeth. 
• Leo had his head shaved and got a Doc Band helmet that he will be wearing for the next 4 months. 
• Both of the olders are flourishing and doing well in school. 
• And although this will eventually be it's own post, we are hoping to adopt Leo sometime in 2019 and are praying that God can carry us through whatever plans He has for Leo's life. 

There is so much more, I'm sure. I could continue to tell you all of the amazing things my kids are doing and accomplishing. They truly inspire me to be a better person. 

I've been pondering on 2018 and my word for the year---forgiveness. 

I really feel like this was a year where God worked miracles in my heart that helped me to see so far beyond what I thought I was capable of seeing. 

I have spent this year mending friendships and letting go of ones that can't be mended. I've spent a significant amount of time working through any resentment still in my heart from my divorce and our difficult court trial last January. I've also worked through a lot of healing with my therapist to forgive myself. 

It is not over. I don't know if it ever will be. I am continuously on this scale of hating myself, loving myself, and forgiving myself for my life decisions. In fact, I feel as though I am still somewhere on that continuum with my ex-husband or others who have hurt me in my past. 

2018 was my year of miracles. I look back on the mostly-smooth co-parenting and the fact that I was able to raise a tiny newborn while working two jobs and going to school full time. It wouldn't have been possible without all of the miracles God placed in our lives. 

It wouldn't have been possible without all of you. 

As I thought about what I want 2019 to represent, the first thought that came to my mind is my need want for control in all aspects of my life. 

I struggle with OCD and anxiety daily.

I like control because if I can stay in control of a situation, my brain tells me that I won't get hurt.

It's not effective. I still get hurt. And my need for control usually just makes me sick with anxiety. It doesn't actually change the things that are happening.

So I'm going to try something in 2019 that I think I'm ready for.

Surrender.

I want to surrender the obsessive controlling that I try to do. This is actually something I've been working on for a while but I need it to be at the forefront this year.

As I pray for the adoption of my Leo boy, I want to surrender the feelings of control and worry that come with each court hearing and caseworker visit. Leo is my second experience with foster care but my first experience with adoption. I've known from the beginning that he was different. Even when they told me at a week old that he would only be with us for a few more days or when they changed their minds right before the last two court hearings and decided not to change the case plan to severance. We have a connection unlike anything I ever thought I could experience with a foster placement. And as this situation unfolds and we continue to love our little guy, it is SO hard not to want to control all of the things. But the truth is, I can't control it. DCS could take him tomorrow and I wouldn't be able to do anything about it. But I want to stop prolonging my enjoyment of watching my baby boy grow up by being scared that I'm going to lose him. I want to surrender those fears to my Heavenly Father and just be Leo's mom right now, in this moment.

As a person who will forever be co-parenting with my children's dad and their step-mom, I want to surrender the need to control each situation that presents itself. Co-parenting is not easy. It is ever-changing as the kids get older and as our personal lives change. I've had two different babies in my home. Their dad got married. Our dynamics have changed many times. And I still feel threatened by his wife sometimes and her relationship with our kids. I hate that I do it but I do. I still get scared that somehow, they will like her more than they like me. I'm still completely overprotective and get frustrated with any little mistake I hear has happened at their other house. And that---THAT is why I need to work on surrendering to Heavenly Father's plan. Because his plan involves my children being loved by myself, their dad, AND their step-mom. And it is a beautiful thing that my children have so many people who love them and care about them. No matter what that looks like or how it is given, all three of us love these kids. And that is a positive thing.

Over the years, my faith has been so strong in believing that God was going to place a future spouse in my life. It is something that is on my mind often. Being single is not easy and I often feel like I'm drowning, trying to keep up on paying bills and making sure my children's needs are met and somehow finding a minute for myself. I'm emotional about this one---because it's the hardest one for me to surrender. Although I am never going to give up on the potential for a future spouse, I think it is time that I surrender the belief that it  will  happen. There have been so many times where I did not know how to make my paycheck stretch and would have the thought, "If only I had a spouse who could provide another income in our home, then we will be ok.". There have been so many times where I realize the kids have more than one thing happening at the same time and I think, "If only I had a spouse, then I wouldn't have to feel anxious about getting my kids places.". There have been so many times where I've wanted to make a decision that feels right or easy but I am not sure I can say yes to it---because how would I take that on without a spouse?

2019 has some huge decisions and changes in the air. Some of those decisions, I can guarantee I will be judged for, solely based on the fact that I am single.

I mean, it sure as hell doesn't make sense that I would turn down a job that would increase our income. And it doesn't make sense that I foster and will possibly adopt other children when we have such a crazy schedule.

I get it. I'd probably look at me like I was crazy too, if I were you. 

But what I wish more than anything is that people could look at my life and understand that I am trying my best and that my main priority is being a mom and raising my children. I'd do anything for my kids---which includes turning down a job that would greatly decrease the amount of time I'd be able to spend with them.

And maybe to some of you, foster children are not my children---maybe that's the part that makes the least sense---but I believe they are my children. In fact, I believe they are all of our children.

God has asked me to take on some huge responsibilities in my life, ones that feel right but seem daunting. I'm scared. But I am trying to surrender to His will---not mine or yours.

I made my castle tall
I built up every wall
This is my kingdom and it needs to fall
I want You and no one else
Empty me of myself
Until the only thing that's left is

More of You
Less of me
Make me who I'm meant to be
You're all I want all I need
You're everything
Take it all I surrender
Be my king
God I choose
More of You
Less of me

More of You

This life I hold so close
Oh, God I let it go
I refuse to gain the world and lose my soul
So take it all I abandon everything I am You can have it
The only thing I need is

More of You

All to you

I surrender

All to you my blessed Savior

I surrender all

How Do I Do It?

This past weekend, my brother finished his two-year church service mission with The Church of Jesus Christ of Latter-day Saints. He's my hero, that kid. The obstacles he has faced in his life have been challenging but have not kept him from his goals and I think that's what I love about him the most.

He is a great example to me of doing hard things. 

On Sunday evening, my family threw an open house for him so that people who have been a part of his journey could celebrate his accomplishment. This was something I was selfishly looking forward to because I knew I would get to see many people from my childhood years, people who had helped shape me into the person that I am today.

Throughout the night, there seemed to be a theme among people that hadn't seen me in years and asked me whose baby I was holding.

"Mine!", I would reply, before explaining how Leo came to be in our family. And as soon as I would finish, the question was always the same. "How do you do it?"  

It's a fair question, although being treated like Super Woman when you often feel like Hot Mess Woman is a little uncomfortable for me.

But I wanted to address that question in blog form because it's usually pretty hard to articulate when I'm asked face-to-face.

How do I do it? 

How do I raise two biological children while also raising the sweetest little baby boy through foster care? How do I work 30+ hours at a pediatric doctors office while my kids are in school and promptly go work another 14+ hours working at the dance studio every week? How do I manage to be in school full time, this semester taking 6 classes total online?

How do I do it? 

I take it one day at a time and my Google calendar is my lifesaver. My ex-husband's wife was actually the one who suggested a Google calendar because I could update it and it would be shared with the two of them. Genius! I now have three calendars on there---a calendar for the kids that is shared with their dad, a calendar for Leo, and my own personal calendar. Everything is color coded and includes every little thing you could imagine, including which days the kids are with which parent and everyone's personal (and crazy) dance schedules.

My calendar is pulled up on my computer and my phone at all times and I check it multiple times a week to make sure I'm staying on track with everything that we are doing.

How do I do it? 

I go to therapy. 

I remember a few weeks ago when my therapist asked me, "Suzanne, what do you do for self care?". I couldn't really muster up an answer because I was feeling especially defeated that day. But when I got home, I realized that therapy IS my self care. I know it won't be forever and quite honestly, I find myself not relying on it as much these days but back in January, when I was suffering from PTSD regarding the nine month trial that had happened most of 2017 and I had to imagine what life would be like if there was a huge custody change for my children, I needed her as much as I needed air or water or food. I relied on therapy because my beautiful life---the life where I fought for what was best for my children and ultimately was given what was best for them---just seemed so uneasy most of the time.

How thankful I am to no longer be in that same place that I was back in January of this year.

How do I do it? 

I rely on God. 

Yes, I should've put this one first because it is definitely at the top of that list. But I don't feel like moving it so you're just going to have to trust that it is the most important one to me.

I like to say that I rely on God but often times, God just shows up even when I think I can do this without extra prayers or asking for guidance (because I'm kinda stubborn). God is a huge part of my life and I have a gift of feeling close to Him even when I'm busy and life seems to take precedence. I recognize the many moments where God has led me to where I need to be. In fact, take Leo for example---I know Leo is supposed to be in our family. I knew I was called to foster care without knowing why. Leo is my why. Yaya was my why. God knew He needed me to protect these babies at these specific times, even though my life did not seem to be in the perfect "foster parent" position. But I'd argue that is ANYONE'S life in the perfect position to become a foster parent? It's messy and all the training in the world cannot fully prepare you for the experience that is foster parenting.

How do I do it? 

I let things go. 

I do the things I need to and the things that I want to do and I give myself permission to let other stuff go. When a friend wants to hang out and I literally write back, "Sure! I am available two Thursdays from now.", that is not me being a jerk or not wanting to see my friends. If I can make it happen, I try to. But my kids come first. And my work comes second. And school comes third. The rest of the things may or may not happen.
And that's ok! 
I have realized this past year that I get to choose what to put in my life and that I don't need to feel guilty about the things that take a backseat to what I believe is most important.

How do I do it? 

My tribe supports me. 

I wouldn't be able to do this life thing without my family or friends. They willingly take my kids on Saturday mornings while I teach. They listen. And that might be the biggest support. I have a few friends who I talk to almost daily about the ups and downs and everything in between. They listen and offer guidance but often times, they just remind me to look at the bigger picture. Because living in the chaos that we are right now needs to be embraced. I cannot change the fact that I'm single. And I refuse to put my goals and dreams on hold because I'm single. So I'm going to have to embrace the chaos that is my life right now.

How do I do it? 

Sometimes, I don't. 

I drop the ball at least once a day. Just this morning, I was SO proud of myself because we got out the door on time! As I drove up to the kids' school, I looked over at my front seat and defeatedly asked the kids, "Did anyone grab Leo's bottles for daycare?". I already knew the answer before they could reply. I hadn't asked anyone to grab them so why would they have grabbed them?

Tears began to stream down my face, realizing all of my hard work from the morning wasn't going to do me any good. I was still going to be late for work.

Defeated was the only word I could think to describe it, really. And this is not just a one time thing. I try to stay on top of everything but it's inevitable that something falls through the cracks.

Usually, it is that my house is a disaster and the dishes have started to smell. Or that the kids haven't finished their homework and gotten it signed. Or that Leo's gorgeous biracial hair has not been combed. Or that I haven't cooked a meal in over a week. Or that my homework is past due.

It's always something. There is always some area of my life where I can pinpoint failure. And if I let that eat at me, I am bound to sink into a pit of despair where I wonder HOW I'm EVER going to be successful at this life thing?

Because as you heard, forgetting bottles at home brought me to tears today...

So how do I do it? 

I just do it. I try to stay as organized as possible and I try not to beat myself up when some days just blow up in my face. I try to embrace the days we don't have a long list of things happening and I also try to embrace the days we leave our house at 7:00am and don't get home until 10:00pm (those days really do exist).

I am not Super Woman. I do not have super powers. All of these things I do, you would probably do if this were your life.

I am learning to respond with "thank you's" instead of deflecting my accomplishments. Because the truth is, even on the days where I fail at some things, I'm still doing pretty great. There are still a lot of things I'm doing right. So when someone tells me I am doing amazing things, I don't roll my eyes or say, "You should see my house right now.", I am learning to agree and thank them for noticing.

Because this Hot Mess Woman has got a lot of things going right and those things really should be acknowledged.

Our Invisible Scars: Mindy's Story

I once wrote a piece on my old blog about invisible scars and the validity of fighting battles that no one else can see.

And at the time, I was battling my eating disorder and referring to the emotional scars from my divorce.

Since then, I've been trying to figure out this new me, this person who has invisible scars that don't really make sense to anyone else. I've tried loving this anxious, paranoid person that I've become because she is still me and often times, she is the most prominent part of me.

And it's been hard. 

Loving this part of me is not easy at all. 
I get really impatient with my anxiety and I often feel stupid for feeling the way that I do. It takes a lot for me to be able to step back and validate my anxious feelings instead of dismissing them or shaming them.

Because in reality, there is usually a reason I can come back to that validates the way that I'm feeling.

For example, I have pretty irrational anxiety when it comes to losing people I love. And sometimes I'm really impatient with myself about this. Because spending time worrying about whether my kids are safe at school or whether someone I love will leave me does not actually stop bad things from happening.
And sometimes it's hard for me to validate the fact that my husband left me because I don't want to 'just be the victim' but in reality, those choices have left some pretty intense scars on my heart.
So it makes sense why I struggle with separation anxiety.

Living with these things has really caused a lot of speculation about life and what the people around me are going through.

When I 'people watch', I wonder what has made that particular person who they are. I wonder what they've been through and how they're doing right now.
I imagine their invisible scars---the really tough things that they've lived through---and I wonder if they still feel those scars or if they have been able to move past the most heart-wrenching parts of their lives.

I wonder who has anxiety, who is depressed, and who is feeling self-conscious that day. I wonder how many of their stories involved thoughts of suicide or other self-hate/self-harm.

And although it isn't any of my business what their deeply personal stories are, I do this to remember that everyone has fought battles and everyone has reasons for why they are passionate about certain things or why they are in a negative mood or why they seem so tired today.

I don't believe people are just mean or angry because they thought that'd be a fun mood to try out for the day.
I believe there are reasons. 
In fact, I've been hurt on more than one occasion by people who had promised to love me and although my pain was and is real, they had reasons. There is more to the story than just a, "He left me because he's a jerk and now we're divorced."

People have stories and reasons for their choices. 

And whether their choices are right or wrong, I believe that most people, in the situations they have found themselves in, have tried to do the best they can with what they know.

I don't think it is our job to condemn others for all the ways they are failing.

I believe it is our job to build them up when the world tries to depict them as a failure. 

Sure, we need a judicial system and boundaries and protection. But that is not the level I'm picturing right now.

I'm talking about our coworkers, our friends---even our family members. 

Isn't it so easy to find the flaws in other people? When they mess up at work or they didn't put away their dishes or they bowed out on a girls night---our first thought is often annoyance and we often sneak some judgement in there too.

But sometimes, the people we love are fighting invisible battles too and when we point out their mistakes, all it does is show them that their heart is not safe with us. And so maybe they stay quiet when they would've spoken up.

Last year, I had to do a project in one of my classes that involved interviewing a woman who either worked in the healthcare industry or had a diagnosis that caused them to need a higher number of doctor appointments.

I chose to use my friend, Mindy, who has Multiple Sclerosis.

Mindy was one of my closest friends in high school. She always understood me and had my back, when I often believed that the world had turned against me. She almost always had a huge smile on her face and I have never seen her treat another person unkindly.

In high school, Mindy had some health problems but nothing major. She just seemed to get sick easier than most kids do and I remember her complaining of headaches and other pains sometimes. The thing is, this was my perspective---things I actually remember from high school---which means, it was probably much worse than what I had heard or witnessed.

Mindy is now married with two young children. And a few years ago, she was diagnosed with Multiple Sclerosis after a portion of her body went numb and she pushed doctors to do further testing. And since that diagnosis, I have seen a completely different side of my friend.

I have seen someone who is brave enough to talk about their bad days so that other people know they are not alone. I have seen a mother do everything she is able to for her children while also showing that needing help is not a sign of weakness. I have seen her {still} smiling in pictures more often than not. And I have learned more awareness for those struggling with MS.

Mindy has invisible scars. Her body doesn't always work the way she wants it to. It doesn't take more will power or trying harder or praying more.

And when I think about Mindy's situation, about the pain she is probably in each time I see her (although her face shows a huge smile), I try and remind myself that there are so many people I interact with whose stories I do not know.

So while I've asked for your patience personally in the past, I'm asking for your patience with everyone else in your life.

Because stating I have anxiety out loud might bring about some awareness but I can't change the way you view or treat other people. And I think if you knew their stories, you'd probably react differently toward them.


**********************

If you'd like to read the essay portion of my project to learn a little more about MS and Mindy's struggles, keep on reading!

Mindy Hermann is a 29-year-old female, married to her husband, Mike, and mother to her two young children. She was diagnosed with Multiple Sclerosis in June of 2017 at the age of 27. Mindy had gone to the hospital with right eye pain and had been diagnosed with inflammation in her optic nerve. At this time, she was referred to an ophthalmologist, who she was able to see the very next morning. This ophthalmologist confirmed she had optic neuritis and got her in to see a neurologist that afternoon. The neurologist she saw was not familiar with pain when it comes to Multiple Sclerosis and ordered an MRI but Mindy’s insurance did not cover this procedure so she did without it. Exactly one month after this experience, Mindy began to go numb from her rib to her knee on the left side of her body. Days later, she found herself back in the emergency room, this time begging for them to give her an MRI because she suspected it was Multiple Sclerosis. Doctors gave her the MRI and her diagnosis was confirmed.

             Mindy’s struggles are far from over and as she described in her interview, the symptoms of her Multiple Sclerosis have escalated throughout the past two years. Currently, Mindy deals with trigeminal neuralgia, foot drop, Multiple Sclerosis hugs, and optic neuritis. She has been numb from her chest to her toes since the month she was diagnosed, back in June of 2015. She also states that her struggles include depression and anxiety, two effects that coincide with an article I read while preparing for this essay, entitled Depressive and Anxiety Symptomatology amongst Multiple Sclerosis Young Women: The Occupational Therapy’s Perspective. This study, which was done in Greece at the Association of Multiple Sclerosis, found that 25% of the women experienced depressive symptoms and that 14%-41% were experiencing anxiety symptoms. (Ioanna, Margarita & George 2015) Living with Multiple Sclerosis is especially difficult on Mindy, as she is raising her 2-year-old son and 4-year-old daughter. Mindy stays home with her children and often feels guilty because she cannot do some of the seemingly normal things like taking her children to the park or walking them around at the local zoo. Because of these struggles, Mindy is extremely lucky to have a pretty strong support group. Her husband, Mike, and her mother are her biggest supporters and help her with the things she needs. When she gets transfusions, her mother has sat with her for hours and played games with her. Aside from the people who can physically be there for her, Mindy has also found support in an online Multiple Sclerosis community and feels comfortable asking them questions and being able to vent when she is having her low days. Mindy also talks about the support her friends have been. Although it might seem like a small way to support someone, Mindy has said that when she posts articles on social media and finds out her friends have read and/or shared them, she feels a deep sense of support from them and appreciates that the people in her life are trying to be more aware of the effects of Multiple Sclerosis.

            The obstacles that Mindy has faced in the past two years have been very difficult for her. This started with her first doctor who did not want to do an MRI. Mindy had to push to get an MRI at the hospital because she knew this was serious and wanted to get answers. This same neurologist had put her on 50mg of steroids before leaving town for two weeks, leaving Mindy to continue the steroids for a month. This was not good for Mindy’s health and when the neurologist returned from vacation and she was able to see him again, he let her know he does not treat patients with Multiple Sclerosis. Although this would be absolutely frustrating for anyone to experience, it isn’t all that uncommon. In an article entitled Access to Preventive Health Care in Severely Disabled Women with Multiple Sclerosis, we can learn that healthcare access for women with Multiple Sclerosis is not always easy due to these particular patients experiencing impaired mobility, cognitive difficulties, and mood disorders. (Dobos, Healy, and Houtchens 2015) These sometimes-difficult symptoms to treat can negatively impact the type of care women with Multiple Sclerosis receive and also make it so that particular doctors will not treat them, as we’ve seen firsthand in Mindy’s case.

            Mindy has also had to face obstacles directly related to her treatment for Multiple Sclerosis. She started on a medication called Tecfidera, a pill she takes twice a day which causes severe flushing. When Mindy described this, she said to imagine a horrible sunburn feeling all over her skin that lasts for an hour every single day. She also states that all of her spinal lesions have progressed. Because of this, she started on Tysabri, which is a monthly infusion through an IV. This causes her body to feel awful for 3-4 days after each infusion and more specifically, causes fatigue, nausea, and body aches.

            When Mindy was asked whether she feels her diagnosis has caused others to perceive her differently, she states that, yes, she feels she is perceived differently now. When she was first diagnosed, Mindy had a 2-year-old and a 6-month-old and felt that everyone was looking at her with pity. After some time, she has realized that each of the people who reaches out to help are doing so because they care about her and truly want to help her family. This has helped her to recognize how people perceiving her differently doesn’t have to be labeled as a negative thing. Mindy is different since her diagnosis and that is merely a fact.

            When asked whether Mindy felt her care was ever affected by her race/ethnicity/gender/income/status/age, she simply answered no. While this answer was very positive, it is not always the norm for people in Mindy’s situation. Judith Lorber and Lisa Jean Moore state that women with disabilities are less likely to find a life-long partner than their male counterparts. This has to do with the fact that women are expected to be caretakers and when they may not be able to do this, it goes against the gender norm of what men expect and want when looking for a partner. (Lorber & Moore 2002)

            In Mindy’s ideal world, she states that there would be a clinic specifically for Multiple Sclerosis patients, where a higher knowledge of Multiple Sclerosis and treatments would be available to patients. Mindy started having symptoms of Multiple Sclerosis in high school and started with an ultrasound and x-ray of her chest, which brought no conclusions. She also got a CT scan to try and find an answer to her headaches, which again, brought no conclusions. If Mindy had been able to find someone who knew enough about Multiple Sclerosis and order an MRI when she was younger, she would have been able to start her treatments in the beginning stages of her Multiple Sclerosis. Another point that Mindy brought up was regarding the medical bills involved with Multiple Sclerosis. Although Mindy is on an insurance that fully covers her medications, she states that many patients in her same situation can be expected to pay up to $7,000 per month on the medications they need to treat their Multiple Sclerosis.

            While interviewing Mindy, I found myself wanting to become more aware of the things going on around me. I have known Mindy for over 12 years and remember her having symptoms in high school that no one seemed to be able to figure out. The healthcare system is advancing and with that, I have hope that we will be able to change situations like Mindy’s to hopefully treat these types of diagnoses better.

References:

Dobos, K., Healy, B., & Houtchens, M. (2015). Access to Preventive Health Care in Severely

Disabled Women with Multiple Sclerosis. International Journal of MS Care, 17(4), 200-205. doi:10.7224/1537-2073.2013-046

Ioanna, T., Margarita, A., & George, Z. (2015). Depressive and Anxiety Symptomatology

amongst Multiple Sclerosis Young Women: The Occupational Therapy's Perspective. Health Science Journal, 9(3), 1-5.

Lorber, J., & Moore, L. J. (2002). Gender and the social construction of illness. Walnut Creek: AltaMira. 

Wildfire

Lost.
Wounded.
Still breathing.

Surrounded by a dark forest of trees that all look exactly the same.
Rain drenches her hair and she can no longer decipher between the raindrops and the tears on her cheeks.

To her right, she sees flames.
To her left, she sees a tornado.

Which path does she choose?
Because right now, both look scary and painful and possibly deathly.

She screams toward the Heavens and asks God why He has left her to forge her own path.

She doesn't want to do it. 

She doesn't want to be bruised and scarred. She wants to stay whole.

But God tells her she will learn more about herself this way, that she will grow to understand the world more in depth and be filled with an empathy for others that she could've never known any other way.

He promises her He won't leave. 

But she isn't sure she can trust anyone, even the God who created her and knows her entire path.

Because if God was just, would He really tell her to choose between a tornado and a wildfire? Wouldn't He find another way to open her eyes to empathy and understanding? Wouldn't He shield her from pain?

It is at this moment when she remembers God was not responsible for placing her between a wildfire and a tornado. He did not bring her here. 

She is here through the choices of herself and others in her life.

Opposition in all things.

She is here because God gave His children the ability to make choices, right or wrong. Because He knew that forcing His children to follow a specific path would not teach them that they are capable of making those choices on their own.

And then she understands why He has promised her a deeper understanding in the midst of her pain.
Because her pain will teach her. She will learn how to love deeper.

Without knowing pain, she won't truly know the deepest joy.

But although she understands, she is so very scared.

She is afraid of what will happen in the midst of a fire. She is afraid she may not make it out alive.
And she is afraid that if she does make it out alive, no one will want to be around her because she will be broken.

Broken.

Do people ever fully come back from being broken? 

She steps toward the wildfire, knowing she is about to be burned but seeing no other options.

Her eyes dart left and right, looking for the best path, and they lock on a person caught in the worst part of the fire.

Does she save them and hurt herself more? Or does she take the path less painful?

She knows the answer. God has taught her the answer. 

And so she runs straight into the middle of the wildfire and begins to pull the other woman to safety on the other side.

The fire sears her skin and she screams out in pain. It is in the middle of this fire that she feels her deepest pains immensely.

She feels all of the pain from divorce and custody battles and believing she will never be loved by a man again. She remembers the friends who betrayed her and the ones who just silently left unexpectedly. She feels all of the times she has felt fat and ugly and stupid and annoying.

And she considers giving up. 

But she keeps going because she believes there is still life on the other side. 

When they finally make it to the other side, she looks to the woman and realizes this woman is now holding her.

And she realizes that although God did not stop the pain, He placed them there together to ease the burden of going through this alone.

Their pain was different but it didn't matter. 

Whether for today or for the rest of their lives, they belonged to each other. 

Because although hurt people have the potential to hurt other people, they also have the potential to help other people. 

And in the midst of this excruciating pain, they had chosen to help each other.

It isn't over.
It may never be fully over.

But as the days pass, her wounds begin to heal. 

And although she looks over the horizon and sees many mountains ahead, she knows she can move them. She knows that God will not leave her in the middle of a storm, even when she tries to convince herself that He does.

She knows she can keep going. And that along the way, she will find others to help. And in return, she will find them carrying her when she needs to be carried.

Because she understands that everyone has pain. 

Everyone needs someone. 

And we belong to each other.