Deafening Anger.

As per usual, it’s been a minute since my last post – and a lot has been going on! After months of PT, doctors appointments, crying and screaming I’ve since returned to work after my back injury. Still searching for answers as to why and how – but best guess at this point is it still boils down to the core issue of my abnormal gait and it looks like after just a couple short years of “normal” shoes I must return to the life of orthopedic lifts. Another story for another time.

One thing no one ever tells you about chronic illness and pain is the grief cycle is just as applicable as it is for death. Another thing no one ever told me about grief is that it is almost never linear and almost never really ends. It wasn’t until working with a therapist regularly that I even understood that grief is so much more than when someone dies; but rather anytime any part of yourself or someone you love is lost or dies as well. Since I’ve had disabilities and health issues since birth, I don’t really have a “healthy” time to look back on, or a time before illness set in that many others do. I can’t really grieve what “used to be” in that sense because for me it’s always been this way. Though in my own way since several of my conditions are progressive, the closest I can appreciate to this is remembering times long ago when there were certain things I could do that I no longer can today, or times in my life when certain symptoms didn’t exist…but let me assure you that there is plenty of grief to be had and it still needs to be dealt with and explored just as much as it would if someone had died instead.

Almost everyone knows the 5 stages of grief if asked, but there seems to be one in particular that I always keep circling around to, and one that I don’t feel like is often talked about: anger. On the whole I try to do my best at accepting this lot in life, even if I don’t understand it but I’d be lying if I said there aren’t periods of time where it is straight up just NOT ok. I see red, I want to spit snarky fire words and be bitter about the crappy set of cards I was dealt in the health department. There are many days when I am so pissed off at this useless flesh prison I’m trapped in that deprives me of so many things I want to do. There are days when I not only can’t see the silver linings, but don’t want to. There are days when I hate being disabled and everything that comes with it. Some days I don’t want to be the voice of advocacy and change, inspiring others to do more – I want to scream, cry, yell and hit things at the unfairness of it all. I’m very much still working with my therapist on how to cope and deal with this part of the cycle, but needless to say I have been in the throughs of anger recently with seemingly nowhere to turn and completely lost as to how to deal with it. How do you deal with anger when there is no person or thing at fault? How do you keep doing life when the angry thoughts are deafening? There’s no one or no thing to blame – so where does the anger live? There’s no nice, neat little box for it to go in my brain; it’s just this vague, homeless creature that gets to live rent-free in my brain ALL THE TIME. It’s not always active, but when it gets as loud as it does at it’s worst – it’s all but impossible to ignore. What’s for dinner? ANGER. What do I need to do today? BE ANGRY. Who do I want to talk to? NO ONE, I’M ANGRY. It’s an all consuming anger that is so much more than just being upset with someone or it distracting you periodically throughout the day – it soils and stains EVERYTHING. I would like to say I’m not really known for being an angry person, and I would hope it’s a shock to some that I struggle this much with it – but in these moments it’s almost impossible to filter through to maintain my “usual” composure. There’s no escape. You can’t live like that – so what do you do?

I’ve written many a time before (and probably will continue) about times when I’ve been….less than pleased with the Man upstairs. I feel like there have been so many times I have cried out and not been able to hear Him or understand His answers to my prayers – but there have also been many times I can say I was at the end of my rope without any fancy prayers or sometimes any idea what to even say and He comes through in a way I can’t deny. This was one of those times. It’s hard to describe the depth and type of this soul sucking anger (if you haven’t experienced it or can’t imagine being that angry – consider yourself on the lucky side of this coin) but it is all encompassing and distracting. As hard as you try taking your brain anywhere else just, it doesn’t work….it’s too hard to see anything past the anger. The anger that comes from no particular person or cause yet you still have to figure out where to put it. I was driving to work and couldn’t handle doing everything I needed to for my patients unless the anger somehow got smaller. None of my friends can truly get where I’m coming from and I feel lost as to who I can talk to about this – so in my absolute desperation I just started praying. It was one of the most honest prayers I’ve ever prayed and also probably one of the most simple.

“My chains are gone, I’ve been set free” suddenly started coming through on the radio and I found myself scoffing at it. Here I was about to lose my ever loving mind, seeing absolute red and fire from the anger burning in every cell of my body and Chris Tomlin has the GALL to try to get me to sing praises right now. I’ve never thought much about the lyrics of this song and how so often in my life I’ve heard that God removes chains. Having never been incarcerated or chained in my life, I’ve never had the physical chains that must have been so physically limiting and constraining but at that moment it was the perfect word. I prayed “God, I feel chained. I feel completely destroyed and decimated by the weight of the chains this anger holds. I don’t know how to get rid of it, and I don’t know if anyone can help. But I guess – if you could – I think you’re capable…is it possible for you to just take them for a minute?” And that was it. It wasn’t profound, prophetic or even a statement. It was a desperate question that I was so hoping the answer to was yes. And at least at this moment in time – the answer WAS yes.

Nothing magical happened when I asked that honest question. My anger was still there and I struggled through the rest of my week. But I’ve started to notice in the week since, the anger has gotten quieter in my mind and it has been incredibly obvious and “loud” the good things in my life. God is showing me that my excitement for things and finding things to look forward to, as much as I had thought, isn’t totally gone and in a way a mental switch was finally flipped. I’ve been needing to make healthier nutritional choices and have put it off for a long time, but finally and suddenly the motivation is there and I’m having success with my health goals. My husband and best friend has made the switch with me and we’ve really made it a fun, positive change in our household. I’ve gotten to have several REALLY great conversations with my husband that have brought us closer together. We’ve started making headway on some home projects that make our home life less stressful and filled with more pride at the work we’ve put into it. There are things in my life that are genuinely making me happy, and even a week ago I could not have recognized that.

As much as I would love to say my anger is gone and it will never return – that’s just not true. I’d love to say that I’ve accepted my disabilities and limitations and that I’m always going to be this shining beacon of hope for my community – but that’s also just not true. Do I understand my anger any deeper? No. Do I understand how to prevent myself from mentally getting to this place again? Not really. What I do know, and what I’m focusing on for now, is that I asked for help and received more than I thought possible. I believe God is trying to make my stubborn brain understand that I don’t have to do this life by myself, and if anything, it’s WAY too much for one person to handle on their own. I despise asking for help with humans, what makes me think I could even dare ask for help from the Creator of all existence?! But really in a way it’s a diss to God if I don’t, and shows a lack of trust in Him. In one of my darkest, most alone times I asked in desperation for someone to take some of the burden and He did. I didn’t think it was possible for the anger to be quiet enough again, but He calmed it. And He will be there the next time my anger inevitably comes back. In the meantime, all I can do is continue to work on myself and try to be better, but also I need to work on CONTINUING to believe that He is there and can handle a lot more than I give Him credit for.

Humiliatingly Hard.

Y’all I am struggling. This is one of the hardest situations I’ve had to deal with – which is saying something.

For the past 8 days now I have been completely bedbound. I’ve had worsening back spasms for the past year or so and have an appt with a spinal specialist next month but in my body’s truest fashion it of course couldn’t wait before going haywire. The pain has been unreal. Every tiny movement seizes up my entire back into cement, constantly cramping. Yet for now that’s not even the worst part, and I find myself struggling mentally to keep up the fight.

I do not exaggerate by saying I can do nothing by myself. I cannot go to the bathroom by myself – I have a bedside toilet about a foot away from my bed that my sainted husband has to clean out and even that process usually ends in sobs of pain. I can’t stand. I can’t walk. I can’t change positions in bed….nothing. Up until about yesterday I couldn’t even sit up. Thus far I’ve lasted about 15 minutes before cramping and sobs ensue.

I can’t work. For about 4 days I couldn’t stomach any food or liquids, which makes everything else so much worse. My appetite is coming back a little, but I can’t feed myself unless it’s finger food. I can’t procure my own food or liquids. If my phone charger falls on the floor I can’t get it myself. I can’t shower, brush my hair, change my clothes or do anything myself. I can’t even move around my pillow without everything seizing up and me screaming.

I pride myself on keeping the limited amount of independence I have on a good day. 99% of my brainpower goes to making anyone else having to help me or care for me as low as possible, and usually I can push myself and still do things I probably shouldn’t just to say I can and to do it for myself, but in these situations that is off the table. I literally can’t do any of it.

Do you know how humiliating, infuriating, demoralizing and all the things this is? Imagine seeing something as inconsequential as a pen 3 feet away and being unable to reach for it. Imagine being a very private person and suddenly needing an aid to go to the bathroom and having them have to dispose of it. Imagine having to ask anytime you need literally anything. I hope no one reading this has to ever go through the infantile feeling of something like this – 100% dependent, unable to be left alone and unable to function.

My husband has definitely grown exponentially in his role as caretaker and has had to do a lot of things for me for the first time. He has had to massage the knots through my screams and sobs, knowing it’s what is best for my healing. He has tried so hard to make me not feel alone in this or like I am a burden to him…but I know it is wearing on him. He had to not lead worship this week because I literally can’t be left alone. He’s had to lose sleep listening to me wailing or helping me to the bathroom. He’s had to stand by and watch me suffer helplessly – all because of me. He NEVER puts that on me, but I put it on myself because it is a fact that he would not be in these situations were it not for me. I know at the end of this (though the end feels nonexistent) we will have become so much stronger because of this…

But frankly, right now I don’t care. I don’t want to hear that this isn’t forever and that “one day” I’ll be back to my previous level of function. Right now that means nothing to me and could not feel farther from reality. I’m tired of this. I’m tired of the struggles. I’m tired of telling myself this isn’t forever, knowing eventually I’ll be back in a situation like this again. I’m tired of feeling like I can offer zero to the world from this bed. I’m tired of being dependent on someone for literally everything. I’m tired of my relationship with my husband turning more into a caregiver/patient relationship and losing the fun, loving intimacy we once shared. I’m over not being able to literally do anything for myself.

I am tired, friends.

When Healing Hurts.

This post is going to be one of my more raw and vulnerable ones. It may rub some people the wrong way as it is a controversial topic, but frankly – I can’t NOT say something anymore. It’s difficult to know where to start or how to connect the dots to form a coherent story, but here goes my best shot.

Am I going to explain my experience and thoughts eloquently? Probably not – I’m very much still processing and learning myself….but in this raw state I feel the conviction to share this so that others might be spared from this in the future, or maybe can make at least a few more people think before they speak/act in this specific way.  

Did you know there is a megachurch based in California that literally has had their divinity students legally banned from shopping centers in that area because there were so many complaints of the students harassing and approaching random shoppers with visible disabilities in an attempt to heal them? When I was at Baylor, a very popular church in town had a similar reputation (though with no legalalities involved)  – and I have lost count of how many times I was approached by them during my time there. Imagine a random stranger approaching you in the middle of a meal with family or friends, asking publicly for you to let them heal you (yes – LET them). Imagine going to Walmart to get a new toy for your dog as a special treat, only to be physically blocked when you try to get away from a stranger asking to lay hands on you. 99% of these types of encounters are completely out of the blue when you’re out and about just living your life…it’s not a previously agreed upon, appropriate time and place. It also is never initiated by the person with the disability or illness.

An incident happened earlier this week that has very painfully opened a wound that I have kept closed for a long time and one that clearly is not healed. Long story short I found a personal trainer in my area whom I was told had experience working with clients with disabilities. Fitness and weight management are incredibly difficult when you have a dysfunctional body, made even more isolating when you search unsuccessfully for years and years to find any type of accessible programs or workouts tailored to your ability level. So I get up enough courage to take the chance again, hoping that maybe *this* is the time I can finally be successful. I go to the appointment, see the facility, talk with him about their programs and my personal fitness goals – the whole thing. We’re nearing the end of our time and overall things have been going pretty well until I start to rise and then he very abruptly changes the subject. I’m instantly trapped and frozen. I know exactly where this is going from the minute he says “evangelist” and the panic sets in. The trainer begins to tell me that he has the gift of physical healing and spends then next several minutes telling me story after story of his success stories physically healing multiple people – some even over the phone.

How do I get out of this? How do I leave? I’m incredibly uncomfortable, immediately frozen by released trauma and suddenly am realizing I’m alone with him and the door is *just* too far away and let’s be honest, I’m not making a run for it. This isn’t even what I came here for and suddenly I’m 8 years old again in the same situation, still not knowing what to do. He proceeds to tell me that the only reason I still struggle with my limitations is because I don’t believe in God enough, and that God never meant for us to be disabled or have diseases and do I believe enough today that he lay hands on me and rid me of my clearly disgusting state? Absolutely not. I get out as fast as I can but as the adrenaline continues to rise, the trauma and emotions begin flooding in. 

I am not exaggerating when I say that this incident rendered me absolutely devastated and useless. That evening I was literally unable to even speak without completely breaking down anytime I tried. Didn’t matter if it was to answer what I wanted for dinner, what show I wanted to watch or anything of importance – I was fragile, unstable and inconsolable. Three things I’m not fond of being.

Let me be crystal clear with my mindset and heart on the matter of physical healing before I continue: I believe that God can physically heal and has called certain people to have the ability to give someone else physical healing – I’ve seen it happen!  The Bible is full of stories of God healing people in this way! But one of the hardest thing I’ve had to learn in this world is that doesn’t mean *every* person gets physical healing. And what the point of this post is: for the ones that don’t  -they are not any less of a Christian or a human because of it. 

I could give examples for hours of all the times in my life when I have been minding my own business and someone in public has tried to make a big scene and pray over me for physical healing – 100% of them strangers. I could tell you how at 10 years old I was with a friend and his family after school and without my or my parents knowledge or permission was whisked away to a healing service at their church which was nothing short of traumatizing. I could tell you how everytime I went to a certain friends house her parents would pray in tongues and lay hands on me, when I was still too young to understand and too scared to say no. Thankfully for the majority of these incidences during my childhood my mom was with me and could help me navigate how to get out of these incredibly uncomfortable situations, but as shown by this week – I still don’t really know how to on my own.  

Again – I’m not saying that in the right time and place these types of healing can’t happen. But this is also absolutely NOT the way the church as a whole should continue going about it. If anything it pushes people away thinking all churches and Christians are that way. For so many with chronic illnesses and/or disabilities, it can be so closely and intimately tied to intrinsic value. It’s something I personally have been working on for years with my therapist and will continue to, as it’s an incredibly complex and fluid balance of figuring out how these things play into your identity and core of who you are as a human. When these incidents happen its like someone has taken your biggest insecurity, has mic’ed you up, video on, as it live streams it to the world as humiliation. To have the strength to not allow that to gut and break you is  probably the hardest part. I can never adequately explain how truly small, empty and unworthy of anything these situations make me feel. Can you imagine what it feels like to be on the receiving end of this type of “healing”? All the receiver hears is that they are ugly, broken, unlovable and unusable by God in their current state and that can be remedied ONLY with physical healing, as if God doesn’t use broken people. And on top of that the majority of my experiences have had the added layer of the pray-er blaming ME and saying it is MY lack of faith that is the ONLY thing preventing my healing in this way. Do you not see how damning that is? As a child it made me think everyone so obviously could see I was different and what was “wrong” with me would be a public display I could never escape from. As an adult I get put right back into that space when it inevitably seems to come back around.

This thought process is as confusing as it is incapacitating. On one hand we’re taught that we are all made in God’s image. That to this day remains one of the hardest things for me to believe, as I so often only see my limitations and brokenness – how is that of God’s image? We’re taught that God uses the weak and broken for His glory and service: Noah was a drunk, Moses had a speech impediment, Rahab was a prostitute, Martha worried, Abraham was super old, Paul literally killed Christians before becoming one – the Bible is FULL of examples of incredible works being done through broken & sinful people that was only made more incredible because they all started from such a “low” point. So why are there people so vocally Christ followers who are telling so many they cannot be used as they are? After a while it becomes so engrained in your thoughts that what they say starts to sound true. If nothing else, it definitely shakes your faith and makes you take a second to really think about it. What if they’re right? What if all of my life really has been for nothing and it really is just because my faith isn’t “good enough”? Then the devil gets to snake right in and take those thoughts as far down the rabbit hole as he can get. And these things are told to you multiple times it gets harder and harder every time to convince yourself that they are the ones who are wrong.  

You think disabled people don’t want to be healed? You think we’ve never prayed ourselves for healing? You think any of us would willing choose to live life with chronic illness, pain, limitations, and the daily struggle to simply survive some days? I don’t claim to speak for the entire disabled community, and of course there are always those who use/abuse systems that make it harder for others who really need it but I can say with 1000% certainty that for myself I would give almost anything for physical healing. I’ve lost count of the times I have screamed, begged and cried out for healing to God, only to be left with an answer to these prayers I don’t want, like, or understand. Our lack of physicial healing is not at all due to lack of desire – trust me.

I wish I could end this post with confidence that I have it all figured out, but if anything, this week was a giant slap in the face reminding me that I, in fact, have very little figured out. I’m in my 30s and still don’t know how to appropriately handle these situations, but apparently they will continue to keep on coming unless enough people realize the true trauma and hurt that their words and actions cause, all in the name of Jesus. These types of “ministries” are not of God, do not portray God’s love and make the receiver feel disgusting, undesirable, unvalued and unworthy of life. Even now days later I haven’t made it through the day without multiple emotional breakdowns and don’t even fully believe the words you’re reading. I’m partially saying it for myself as I am for anyone else…I need to make the truth louder than the lies.

I know it is my responsibility to deal with this for myself and I have the power to “let it go”…and I will, in time. But it’s equally as offensive for someone else to flippantly say to those of us who experience this type of “ministry” to just get over it, not let them get in your head, or not have it adversely change your self-worth. It’s not that easy. It’s not like a stranger just came up to you and insulted your new hair cut, scoffed at a pair of shoes or even negatively spoke about your outfit. These incidents are targeting the core and identity of someone as a human, tying it with their very personal faith and it is a staggering, traumatizing event each and every time. The best way to show God’s love to anyone regardless of status, mobility, diagnosis or anything is to meet them where they are at, comfort them and lift them up just as you would anyone else, instead of pouring salt in a very deep wound and ultimately causing more harm. 

Steady Me Now.

Before really diving into this post I went back to my most recent post which was in November, when I took a very sharp turn in my career to completely uncharted territory. I knew it would be challenging and would require a lot of growing pains on my end – but looking back it challenged/continues to challenge me in ways I would have never expected or thought possible. This season of my life feels like it has been the most uncertain for me, and one of the hardest in almost every facet.

The short of it is that recently my new career venture and I parted ways VERY unexpectedly (I was laid off). I have many feelings about this but will not elaborate, nor is it really important in the grand scheme of things….needless to say I’m still processing. This unexpected sinkhole in my life’s plan has really made me feel like my entire life was thrown in a topless blender mixing at full capacity; shooting in every direction with no stability in sight. Those that know me know that I have a plan for basically any scenario. I plan, I research, I have options and multiple paths forward which will all lead to a goal. I NEVER go in unprepared. In a way I have to be if I want any sort of quality of life in this inaccessible world. I’m always trying to overcompensate for society’s shackles of being disabled and feeling like I have to go to the death to keep up with everyone else and still earn my keep respectably. This company was included in my 5-10 year plan for at least 5 years prior to ever having applied. This was supposed to be IT – the job I had until I couldn’t handle a job anymore. Sure it was now happening way sooner than I thought it would, but God was CLEARLY leading me this way so I hopped in the boat and have been along for the ride thinking it’s going to lead to something so much bigger and better. And in the back of my mind I had been putting so much internal pressure for this to be the big finale; it had to for the cost I felt I was paying for this big grand gesture of faith. And four short months later it’s suddenly just completely gone? Bridge burned, ashes blown away in the wind with absolutely nothing left to hold on to, and no life raft moving forward.

I’ve had quite the identity crisis as a result. I have been taught my entire life that you are to be a productive member of society, and much of a person’s value came from having a job, and then having a better job…always improving, never settling or becoming complacent. It really wasn’t until I met a few select people in life just within the past few years that I’ve become aware there are, in fact, other ways to find your identity other than what you can give to others (if this sounds like a simple concept to you – I truly envy you! Years into therapy and I’m still trying to unpack this and figure out where exactly all the parts of my identity come from).

Needless to say I’ve not ever been unemployed since I graduated grad school and completed my dietetic internship. Up until very recently I had always worked in a hospital – not really the place one usually worries about lay offs ever happening, and somehow in my recent transition to the private sector I did not factor in this was a new possibility….that I would find myself personally in just months in….I don’t know how to be unemployed. I’ve a long list of examples in my life in which I did NOT handle time off well, and did not like nor will I ever like not something productive to do. I have cultivated so much of my self-esteem and self-worth into my career. No one expected me to be independent, to get married, to have a career that is legit difficult and not something everyone can do but I did all the things. My job has so much personal meaning and has interwoven me into the lives of so many families and allowed me to have a part of their journey when things seemed insurmountable. I had a job that people respected and knowledge that people would pay well for. Every day I went to work, even once it transitioned to being physically at home was my own little middle finger to all the naysayers. I did all the things so many people said would never happen. Suddenly I didn’t have that. Was it in any way because of my job performance, work ethic, or anything in any way personal to me? No…logically I know it was a circumstance beyond my control…but the result has very much felt the same.

The past couple years one of the many overarching issues I have been exploring and dealing with is emotional intelligence. The very basics of what emotions are, what each one means and how to appropriately deal with it so that you can move on and not have it come out at inopportune times because you’ve stuffed it away for so long. Looking back at how I was at the very beginning, just about 3 years ago now – I basically had the emotional intelligence of a napkin. Though I can say that now for the most part I am much more self-aware about my emotions and can usually identify them now and trace back to root of it…but the whole actual sitting in the feelings of your emotions and overall “point” of them still evades me if I’m being honest. Negative emotions to me are still just a problem to be fixed, not something to feel. I’m still learning what many parents are now teaching their toddlers basically as soon as they start talking, yet it seems so hard to wrap my left-dominant head around.

Needless to say over the past couple weeks I think I’ve felt any and every emotion at some point. The first bit was especially hard because as I mentioned, my life felt like a topless blender and I had zero footing. I was suddenly in the biggest lack of a plan in my life, with seemingly nowhere to turn. But then! *insert dramatic superhero intro music here* I just ran in despair to my God, my Savior, and ultimately who should be the ONLY place I find my true identity. Needless to say, we had some words. He had so very clearly taken me along this strange side path, and I was making such an intentional choice to chase the journey of being in the boat, even if I felt like He wasn’t really paying attention or explaining to me (like I deserve to know in the first place) why His timing was now. But I went along with it….and now it’s suddenly blown up in my face? What was the point of all of this? I had done so much work on myself and tried to get through the growing pains and to come out of this on the other side better than before, but this was how it was going to end?! It didn’t make sense. It still doesn’t make sense. I sit here writing this with the same circumstance – still unemployed, every day getting closer and closer to the waterfall I’m about to face with the realities of continued societal obligations and needing things like, you know, medical insurance and money for bills. I still don’t have a definite plan forward…..yet I’m no longer having the panic inducing, fear fueled spirals of being in the blender. My situation hasn’t changed at all – but where I’m looking for my answer changed and thus my feelings did. I asked for peace and I received it. The biblical peace I’ve read about for so many years and prayed for for so many other people….I finally really experienced it. God so clearly led me down this path and clearly my thoughts/plans/dreams for this life were just blown to bits so He’s GOT to have something better – right? And once I REALLY believed that and claimed it – it happened. I couldn’t explain why but I truly wasn’t worried about it anymore, and wasn’t even having the physical symptoms of overactive adrenaline anymore. At this point I HAVE to believe there’s something better.

This is not at all to say that I’m not scared anymore or worried about the very real logistical things that have to be dealt with soon. It doesn’t mean that I’m not scouring job boards for new positions, using every connection I have access to and still doing everything I can to change my situation. This is not at all to say that I feel like I’ve conquered some giant battle, for I know I am deep in the midst of it still….but ultimately I’m wasting my time and frankly of lot of my finite energy stores worrying and being scared when I don’t have to be. And I sat here this evening in a rare few hours of alone time just enjoying myself and singing loudly to my favorite songs, and one that has been on my list for so long but never really stuck out to me suddenly quite literally stopped me in my tracks and grabbed my attention.

It was like I’ve never heard this song before. It was like God stopped me from doing what I was doing (playing a video game) and really listen to the words. And it hit me in the chest like a train that carried with it the relief I so badly am needing and have been praying for. Here’s the full song if you want to hear it, but I put below the section that pierced through my core:

“When I get tired of fightin’
All of the fears I’ve been hidin’
You gave me a breath, and tell me to rest
You never left
I can, I can, I can hear You, calling me by name
………
I can face anything, so let it rain”

The more I listened to this song (which continues on repeat) the more of an emotional journey it kept taking me on. It started with feeling so intensely rawly (yes it’s a word) the beginning of the song, smack in the middle of intense sadness and fear giving up the fight and begging for help. Then suddenly transitioned to complete disbelief that my God would CHOOSE to take my hand and anchor me in the storm time and time again. Throughout my life I have admittedly had times of disbelief and wavered. Times I wasn’t on speaking terms with Him (as if I have ANY sort of right to stand on) and intentionally didn’t come to Him. Yet here He was again coming to save me without hesitation and with a clean sweep of a record. As the tears begin streaming down it turned into a heart song/prayer to God and I just let myself be present in that moment. After a fresh rush of peace came over me it then morphed into this epic goal for my soul to one day have faith strong enough to tell the world to “let it rain”. What a claim of power to the world that is to say with absolutely zero doubts that whatever rain comes my God will anchor me through.

Personally I’ve never given much thought to anchors because they always seemed like a “Live Laugh Love” oversaturated decoration cliche; but suddenly it makes so much more sense after this encounter with God. Even if I never get the privilege of insider knowledge about this or any of my life experiences….I serve a God who already knows not only what my next step is going to be, but what ALL of the rest of my steps will be. He already knows! So I might as well trust in Him to steady me when my world feels chaotic, and to strengthen my place when things are steady and stable.

A New Direction

I’m still trying to process the whirlwind that has been the past couple weeks. Almost anyone who knows me knows I work with little nuggets in the NICU and that has been my dream since I even knew what dietetics was and was choosing it for a major. I absolutely believe/believed that this is the work I am/was called to do. I have the various tenses because I’m still processing that God’s plan seems to be taking me down a different path and honestly? Not totally sure how I feel about it.

I don’t often speak about it…there are VERY few people in existence who know (until now I suppose)…but from birth onward I have always been told that there is a finite amount of time I will be able to work. As my diagnosis has changed/been made more accurate throughout the years I was still told this. Though of course, being the medical unicorn that I am, there was no official guesses on when that would be. So I’ve lived in this constant limbo of never really knowing how long I will last. Granted I’ve done A LOT that doctors told me I’d never do. There was a time I never thought I would get to my nuggets….but I did. And as much as I wanted and thought that I would spend the majority of my career and working life with them, it would seem God has decided the plan has changed. As much as I hate to admit it, the past couple months have been the hardest for me physically. Between the stress of my job, all the physicality that goes into showing up, wheeling around all day and trying to have an insane job that is more than one person’s work load – I hit a wall. I KNEW I couldn’t physically keep this up and if I kept pushing my body was going to decide for me.

Within dietetics there is the option to work for a home infusion company, which basically entails doing the same things inpatient as outpatient. When kiddos (or adults) have to go home on tube feeds or IV nutrition, someone has to be there monitoring and ensuring that it meets nutritional needs and continues to change with the patient. And for one company in particular that I’ve had my eye on for a while – that would allow me to do this from home! This position opened up a couple weeks ago, and I HAD to at least try, and see if this was the time for me to make the switch to a much more physically sustaining job. I never thought it would be just a few short years into my NICU life, but I got the job! So I suppose God is telling me it’s time. It doesn’t necessarily mean NICU is over for me forever….but for the foreseeable future it is.

This brings me to my mixed feelings. Overall I am elated! Never did I think I could still do nutrition support at home. This is going to be huge for my health and stress in general, and will likely allow me to work for way longer in terms of longevity than a traditional inpatient/hospital job. From everything I can tell I’m going to have incredible coworkers and have found a company that has figured out if you treat your employees well, they will stay and be happy and productive. The pay and benefits are steps up from my current position, the entire interview process went strangely smoothly and everything has just been laid out so perfectly that there is no doubt this is what’s next for me. HOWEVER – that being said, there is a small part of me that is devastated. I don’t want to leave my babies, and I certainly don’t want to have to do it for my health. I can’t help but think that this is perhaps the biggest sacrifice I’ve had to make for my illnesses, and get to add it to a growing list of things it has taken from me.

Yes I still have an amazing opportunity in front of me and it’s such a blessing in so many ways….I just didn’t think it would happen yet. I thought I had years and years left to be with my babies before I had to say goodbye. I worked so hard and for so long with them as my goal, and I got almost 3 years for 10+ years of training.

Those who know me know that for the most part I am very non-confrontational and don’t think I would be considered an aggressive person…but with my babies? I’ve seen myself becoming a largely more confident person who is willing to be aggressive in recommendations and fight for my babies to have the best nutrition they can. All of my coworkers will tell you that it was super hard for me to even allow other RDs to help when I was super slammed with notes, because they’re MY babies and I don’t want anyone else to care for them. Who is going to care for them now like I do? Who is going to make them their whole world like I did? I’m just not ready to leave…but here we are.

I’m sure in a few months once I’ve settled in to my new position my outlook will be different – at least I hope it will be. I’m trying as hard as I can to make sure all the positives are being louder than the negative but it’s incredibly difficult. For now all I can do is try to look ahead and get used to the fact that, for now at least, my path is being redirected.

 

 

 

Why?

Hello people of the internet!

As I sit here struggling with where to start I find myself wondering if that’s because I find myself yet again trapped in a vicious cycle that seems to never end…it feels almost like trying to fish out a specific item of clothing while the washer is still spinning everything around – impractical, useless and a never ending game of sorts.

It’s been a good 4 months since my last post, and to be honest going back and reading how positive and great I felt at that time seems so much farther away. Not to say that everything has been horrible – I still have tried to keep my community and village close by and for the most part have been coasting without too much difficulty on top of the usual. However, unbeknownst to most people around that time I took a leap that I have not taken in many, many years and one I swore I never would again – I started a new medicine. I’ve tried literally every nerve pain on the market and most actual pain meds with no real effect on my daily pain. I have completely been off regular opioid use since I went to the Pain Rehab program at Mayo in 2013 (if you’re bold enough to scroll back that far there were MANY a blog post written around then!). In reality they never did anything for my pain, but rather mentally took me away enough to not really care that I was in pain. I’ve continued trying new avenues and over the past couple years have added an immunologist to my always growing team of medical professionals – naturally added a few new diagnosis along the way for kicks and giggles.

Long story short – within some of my condition specific support groups on Facebook I began to see more and more posts about a new medication that many had found significant relief of the daily pain and fatigue so many of us struggle with. I did all the research, had gathered personal testimonies and after many a conversation convinced my doctor to let me try it. While this on the surface may seem like an easy decision – it has been anything but. For literal decades I have tried every medication that spouted off promises of decreasing my pain or aiding in the life sucking fatigue, only to be devastated when it not only didn’t do what it was supposed to, but usually added in horrific side effects. So for a while I had settled with the idea that this suffering was just my lot in life. Nothing to be done about it. Yet here I am again with the prospect of new research and a new way to use an old medicine that people I knew with my condition had seen such significant benefit. Life changing, they said! Their pain halved or better, their fatigue hardly ever a thought. Yet between me and this yes or no decision – was hope. Hope is scary. Hope is something that I used to have a lot more of. Hope honestly doesn’t seem like a positive thing to me anymore, because in the vast majority of these situations, particularly with my health – it ends in heartache. No matter what happens though, there is always a teeny tiny voice in the back of my head saying “But what if? What if THIS is finally the answer and you were too scared to try?”. In a strange sort of way I guess I bully myself into trying, with the fear of giving up being harder to endure compared to yet another failed treatment.

Since starting this medication, my daily life has been nothing short of hell. I already deal with head to toe pain 24/7, unrelenting and NEVER dulled. I have chronic insomnia and fatigue that is nothing short of life sucking. That’s just my baseline, not to mention the other rainbow of symptoms that decide to be jerks from one day to the next. But now? Now I get life altering side effects that change from one day to the next as my body tries to get used to this new medicine. One day it’s changing my mental status so much that I can’t hold a conversation or can do anything of significance because I can’t remember what was happening 5 seconds ago. The next day it’s fatigue so strong I can’t say awake, but the next 3 days I can’t sleep at all. Then that improves and then suddenly I get insane nausea and stomach cramps so bad it feels like I’m being sliced open with a blade and haven’t been able to eat a full meal in almost a month. I haven’t felt like myself or known what to expect when I wake up for the last 4 months…all for a medicine that may or may not even work. Honestly? I has been pure hell and I think it’s finally broken me mentally. I found myself at work, where I pride myself on making sure no one really knows how horrible I feel so as to be taken more seriously, having to excuse myself from our daily meeting because I couldn’t stop the tears from falling and had to cry quietly in the bathroom into my shirt so no one would hear. I found myself yet again at the end of my rope, wondering why I was putting myself through so much when I know at the end of the day it’s going to be like everything else – a disappointment.

The other day a very dear friend sent me a song she had been praying over me, and when I heard it I absolutely broke down. So much of what I didn’t know how to say was now in a mainstream Christian song. And while I’m sure the artist and many who find comfort in it may not be talking necessarily about a physical pain, it was comforting to know that “regular” people also had these thoughts. I’ve posted the link below should you want to listen to it. Not all of it applies to me, as I still want to know the reason for my suffering. No, it won’t wipe the tears away or decrease the suffering at all, but at least in my rational mind it would still be helpful to know the purpose. The line that I can’t seem to get out of my head is when he asks “Are you cruel for allowing it or weak for not stopping it?”. I know it’s not an uplifting or positive mental place to be but it’s my reality. I’m REALLY struggling right now with the idea of serving and worshipping a God who is supposedly so loving, full of grace and will always be our help and rescue when my daily life is full of pain and suffering. What’s the point? What’s the purpose?? If He has ultimate control over the world, what’s the harm in releasing me from this? I would love to somehow feel peace in remembering that He is always here to lead even through the dark, but I just don’t feel it. That’s where I’m at. Not really sure how to close this out other than that. I’m sure at some point I won’t feel this way….but for now this is my reality.

https://www.youtube.com/watch?v=z_lHeeXZYuI

Looking Up.

I feel like my past few posts have been quite negative – though completely honest as for such a long time that’s where I’ve been mentally. It hasn’t been easy to make public these vulnerabilities and to let down my guard, but I think it’s important. Throughout my searches for a chronic illness based resource for encouragement, or really any book in that same genre, I’ve never come across one that is written while in the valley, in the “suck” of it. To me it’s always seemed like superficial or seemingly fake/produced excitement on the other side and “God is so good” or “God is the Great Physician and I never struggled because He was with me” sort of thing. While these things are true, it doesn’t always feel helpful in the thick of it – I knew I was so much looking for someone in that same headspace and since I couldn’t find anything figured I would make my own.

This post is important for my journey and will hopefully continue to be a source of help/encouragement for someone else reading it….but I feel so much better mentally/emotionally/spiritually than I have in the past couple years through extensive therapy and intentional work on myself and my thoughts. And as important as it is to document the journey through the suck, I think it’s just as important to document coming out of that dark, dark valley. I recently saw a phrase online that has stuck with me that says “It doesn’t get better, YOU get better” – and while I don’t think it’s 100% true for every situation I think it was an important mindshift for me. My situation hasn’t changed. I’m still chronically ill with several progressive, debilitating conditions. I’m still in constant pain with constant fatigue. My daily stresses with work and life are still there, but my perspective and thoughts have changed. I’ve been working so hard on myself and trying to get back to where I was previously with really understanding my identity and perspective on the world. This is absolutely not to say that I am done with this process, and I don’t think anyone ever can be. It’s not to say that things are suddenly easy or that I no longer struggle with negative perspectives and self-talk….but I’m learning how to cope and reframe things so that I can deal with this life and everything that comes with it.

Perhaps the biggest change/shift that has happened recently is I’ve returned to church and have Christian influences as a regular part of my life. I wrote a previous post not too long ago regarding my time away from church (another very raw piece, but needed to be shared). It’s absolutely incredible how just allowing that positive input to come in has changed things. I’m being reminded of who I am in Christ which at the end of the day is all that matters. I’m part of a community that has rallied around and supported me through this whole thing and will continue to help me shoulder the burdens of life, just as I do the same for them. This Sunday we sang a song that I haven’t heard in a while, and the words hit me so deeply I found myself with tears streaming down my face by the end of it, completely overwhelmed and grateful for the love of God. Here is the official video of it if you’d like to listen (https://www.youtube.com/watch?v=TdqenA8k_GU), but the main part that really hit me in the core was the bridge:

“When I thought I lost me

You knew where I left me

You reintroduced me to Your love

You picked up all my pieces

Put me back together

You are the defender of my heart”

It so perfectly describes the past year or so for me in a way I didn’t know how to put into words. Sixish months ago I was in the parking garage at work crying to my therapist and feeling like a completely empty shell of who I used to be. My last few posts get into it, but Cliff note version is for so long I’ve let all the negative noise and lies be the only input and had completely shut out the positives and parts of me that have shaped who I am and in that process I got lost. Yet in His unfailing and unrelenting love I was able to go back to the God I had purposefully shut out for so long, and was welcomed back with no judgement and open arms. I’m not all put back together and honestly don’t know if I ever will be….but slowly the pieces of Jordan are coming back and I’m remembering who I am in Christ, allowing His love and influence to be consistently fed into my brain and soul throughout the week…and it’s such an incredible difference. I feel like me again, and several months ago that seemed like an impossible feat. Therapy does wonders. Community does wonders. God’s love is inexplicably wonderful. I don’t deserve this love I receive, but will gladly take it and do my best to serve Him in return.

Leaving it behind.

Well people, we have officially survived 2021! Usually around this time of year people are choosing a word or mantra to represent the year ahead, making New Years Resolutions (that usually never stick) and seem to have a higher air of hope. I’ve never really been drawn to one single word and trying to make an entire year and everything that happens somehow relate to it – though it obviously is successful for some, and kudos to them!

 

Yesterday our former pastor was in town and guest spoke at church, which was amazing!! His messages always found the way right to where my heart needed, and we spoke the same language…and he’s also a Baylor bear which never hurts! In just a few short weeks our new pastor will arrive and I can only pray that he has the same effect, if not moreso, on our congregation and can lead us into this new year with amazing plans for our church. Back to the story – he talked about possibly my least favorite word – CHANGE. I don’t do well with change. I don’t like change. Yet if I REALLY want to experience the power of God and see how He takes my life and molds things I have to be open to change. God often doesn’t work the same way twice and throughout scripture is constantly advising us and God is straight up saying that He loves all things new and we constantly must perceive how He is working. This does not sit well with my OCD soul. BUT – as a part of this change and in order to truly be ready to receive it, Matt spoke of something I hadn’t ever really thought of before…perhaps moving into a new year or new season doesn’t necessarily have to be about what is to come and how to be ready for the change, but rather how to make your own self ready for growth by possibly letting go of something that is holding you back from your journey. Whether that be a particular sin, a particular friend or group, an emotion, past trauma…whatever it is that you keep carrying around instead of sharing that burden.

 

What do I want to leave behind in 2021? Anger. Isolation. Misery. I’ve posted recently about the struggles I’ve faced throughout my whole life, but particularly heavily in the past year. I have allowed myself to become so isolated that the only voices and noises getting through were negative. Telling me I am a worthless, disabled human who will never keep up or be enough. Telling me that the smaller my friend/family group is the less burden I will be and the less schrapnel damage will be had, when in reality we were created for community and were never meant to fight on our own. It was also very easy to be negative because the entire globe was being negative, with probably 95% of the entire years news somehow COVID related. This trickles down into people’s daily lives whether it be from the disease itself or because of where you work (like I do, in a hospital where nowadays seemingly everyone is grumpy ALL THE TIME). No one seemed to feel the Christmas spirit this year and the whole year just felt…off, down, sad. Just in the past few weeks of being intentional about interacting with people (even something as small as commenting on someone’s post when I would otherwise continue scrolling like the social media troll I am), I’ve noticed a HUGE change in my day to day feelings and vibe, if you will. I realize that there are people who exist, many who I had no idea of, who WANT to get to know me and WANT to spend time with me. They WANT to know my story and won’t back away when it gets too hard or sad. Life is a lot more interesting when you let other people in on it, and the many minutes that I spend scrolling on various social media sites are a lot more entertaining with engagement.

 

Will I get angry at some point in 2022? Most likely. My medical problems are all still there and progressing, and I find myself (yet again) starting with a new specialist and tests and “what if it’s this?!” and all the emotional baggage that comes with that. There will still be flare days when I can’t get out of bed and feel like pond scum on the bottom of a boat because all I can do that day is exist, and maybe get to the bathroom 20 feet away. Absolutely that is still infuriating….but I don’t have to sit in it forever or allow it to become all consuming. Will I isolate myself? Probably, because that’s my automatic coping mechanism and it feels natural for me when things get overwhelming to back off….but that doesn’t mean I have to isolate all the time. And I now have an ever growing list of friends who have specifically have offered to come to me and watch a cheesy movie when I don’t feel up to leaving the house. They are willing to meet me wherever I may be on any given day. Giving up these things is not an easy task, or one that I believe is a one step process. It’s going to be a daily, intentional decision to move on from these feelings and attitudes that honestly bound me so tightly the past year.

 

I will leave you with a meme (story of my life – there is a meme for EVERYTHING!) that has really stuck out to me and maybe it will be of some help to you, or may spark some thoughts or journeys of your own. This really hit me hard, as I often immediately feel the “issue” coming back and go straight to it being my fault or that I’m not trying hard enough or working enough to better myself. We may get better at an issue and it may circle around less and less often as we work on ourselves and do the work to heal past traumas, but that doesn’t mean that work isn’t still being done.

 

“If you’re doing the work, meditating, seeing a therapist/practitioner, etc and find that your “issues” still show up: It speaks to how deep your wounding runs, not that the path isn’t working. What’s appropriate is a depper compassion, not judgement/shame. Please keep going” – Ralph De La Rosa.

  Disclaimer: This email and its content are confidential and intended solely for the use of the addressee. Please notify the sender if you have received this email in error or simply delete it.

Shaken.

Merry Christmas season, dear friends! Christmas is my absolute favorite time of the year. It’s always been the “big” holiday in our family and growing up I remember that warm fuzzy feeling that came along with all the decorations, the fun annual goodies, the fun seasonal music and getting to be around family. This year feels a little different, and I feel like I’ve talked to so many that can’t get into the holiday season, and I totally get it.

 

It’s been a couple months since my last post, which albeit was not the most encouraging or positive posts – but it needed to be said! And since then I have had the joy of adding a few quality people to my village who are helping me get through day by day, as I also get the benefit of being able to help them in the same ways.

 

Struggling with my identity has never really been a huge issue for me until the past couple years, probably the last year being the apex of the struggle. In talking with my therapist over the past few months about this (growth is unfortunately NOT a quick path as much as my goal oriented and ambitious self would like it to be) and am starting to realize how this struggle has become such a forefront in my life when it never really has before. I grew up in the church, and it was just a non-negotiable part of my life that I never really questioned. We went every single week (with the rare exception of course), and as soon as I was able I started to be involved in the youth group and that was my core group of friends until I moved away for college. Church was such an automatic part of my life and I was constantly receiving positive messages and surrounding myself with like-minded individuals who walked through life with me that I never even considered a life without it. Fast forward 10ish years to the general present, in which honestly I feel like a completely different person and have such a completely different life – not even necessarily all negative, but still so foreign and seemingly far from where I started.

 

This is not easy to say. I haven’t wanted to post about it because not only is it admitting it to myself, but I’m openly sharing it with other people and allowing myself to be vulnerable and open to probable judgement…but growth happens in the uncomfortable, right? Yesterday I went to church in person for the first time in I don’t even know how long. If I had to guess – going on 8ish months? It wasn’t because of COVID and it wasn’t because I didn’t have enough spoons to go (though there were a few times I could have pulled those cards), because I didn’t even bother to watch online during this time either. For the first time in my life I didn’t WANT to go. The past few years medically have been so difficult, so demoralizing and exhausting as I progressively get worse and it becomes that much harder to not blame God. I don’t understand why this life was given to me, and likely never will on this Earth, but at a certain point with each new “speed bump” or diagnosis, it felt like a never ending cycle of “when is enough, enough?!” To me being in such depths of anger and frustration with God felt like the epitome of hypocrisy to continue going to church and going through the motions and pretending everything was okay – so I just completely cut it out. The longer I cut it out, the easier it became. I didn’t have a solid support system at my church like my husband does (though I am working on it actively now!) and I had so many “good” reasons that I was able to slip under the radar for so long without anyone really realizing how out of touch with Him I really was. I vividly remember one day in youth group hearing the pastor share a statistic that 1 in 3 of us in that room would at some point stop going to church and I remember thinking how absolutely absurd that was and how that could NEVER be me! ….yet here I find myself.

 

I’ve discovered (yay therapy) that so much of my recent severe depression, isolation and gradual loss of identity is because I’ve completely shut out any positive noises and allowed only the dark, hard ones to be seen or heard. The positive, encouraging and loving voices that help keep you going in the hard times that were so much part of my framework of growing up suddenly aren’t there anymore – and understandably overtime not hearing that side of things has completely clouded everything.

 

Going to church yesterday was so much more emotional and raw than I was expecting. I suddenly was back in this building that previously has brought so much comfort with people I knew who were genuinely all smiles and beyond excited to see me, and I found myself getting uncontrollably emotional with a simple “How are you?”. I have isolated myself so much to the point that a friend genuinely asking and genuinely wanting a real answer that I was just so overwhelmed and started crying like a moron. I’ve gotten so used to being dogged on or walked over, with such low self esteem that I’ve forgotten how lovely it feels for someone to be kind and caring. I’ve so allowed the world to tell me that because I’m disabled that I am suddenly of no value and someone to be pitied who should spend their days in isolation as to not burden anyone else further than I already feel I do.

Yesterday was such a wake up call to how much I have shut myself off, not just from the most important relationship in my life, but from everyone and everything around me. I forgot what it felt like to be a consistent part of an uplifting group and have just been sitting in the suck of all the negatives of life, without allowing any positive messages to get through – of course it’s thrown off my core! Getting back to where I was is not an easy process at all, nor will it be a quick one. However, I’ve finally hit my head against the wall enough to realize how crucial those positive, uplifting voices are and how much I need them back in my life, even if it means being uncomfortable. Accepting who I am as a person, accepting my physical limitations and understanding how to identify with all the parts of me is something that I can’t really mentally fathom yet – but I can at least say I’m on the path and trying, which is not something I could have said in the past year with any sort of honesty. 

 

Searching for My Village

Where to start? This “season” (which currently feels lifelong), has been HARD. I grow weary of the never ending climb back up the hill to positive mental health and sense of self. Depression has taken hold of my thoughts and seems to saturate my mind and is blurring what I used to know as truth.

One of the (many) issues I’m working on with my therapist is what many seek: acceptance of self. For me, that seems so entangled in my disabilities and physical issues and I don’t ever see myself being “okay” with my limitations. Last week I fell on my new hip, HARD. It was the whole scenario of the EMTs having to come and pick me off the ground and take my screaming self to the ER to ensure I hadn’t damaged my new hip. I was told for the millionth time “I don’t understand why you’re in so much pain”…and here I am a week later still without pain relief, and my physical therapist has stopped all treatment until she can address her concerns with my surgeon. So that situation is pending and it would seem I have in fact done some sort of damage.

I spent my birthday sitting in one of the most disappointing doctor’s appointments ever, the thoughts of which robbed my joy the rest of the day. This was only my second appointment with this immunologist and when I told him the regimen he has me on (which he assured me would do nothing short of cure me in a month) wasn’t working – he looked at me as if in disbelief and told me I “don’t look that sick”. SERIOUSLY?! Who is anyone to say that, much less a specialist of this rare condition?! I felt so dismissed and uncared for. Not to mention he dangled the thought of RELIEF in my face – even had the gall to tell me that my most constant and debilitating of symptoms such as insomnia, lifelong pain and adrenaline surges would be completely gone…and THEN tell me I’m faking it because it didn’t work?

My depression tells me I was right all along to know it wouldn’t work, that a life of feeling decent was absurd to even consider. My depression chips away another part of me, reminding me I will likely never feel better and I’ve done something wrong. I am not doing enough to try to get better. My depression pulls me deeper and deeper in it’s grasp while simultaneously telling me no one wants to hear my sad story and I will be a burden to share my struggle.

So here I find myself, battling logic and rationale with the ever growing loud noise and garbage that is depression. You ever notice no one talks about it? When you pass someone in the hall it’s the automatic small talk of “How are you?” and if you say anything other than “good” people suddenly get very awkward and are caught off guard. Authenticity seems to just breed uncomfortable vibes and it becomes “easier” to just lie and keep the status quo…when really, that person may also be struggling and may need someone to help bear their burden too.

For so long I have tried to fight alone, trying to keep the shrapnel damage to myself, trying to not be a downer to anyone else. However now I find myself needing a village to help remind me that I am more than my chronic illnesses and I am worth having happiness. I’m realizing how much I need people and that I am not meant to fight this battle alone. If you’re part of my village, please let me know. In this very vulnerable state, I just need to know I’m not alone.