Wednesday, November 15, 2017

A New Chapter For Kelly | Chronic Illness Reality + Wahle Warriors

Writing and this blog is my first love and I have a fun announcement! Chronic health challenges have made writing difficult for me the last few years. Did you know that I am getting a service dog to help me with my balance and mobility disabilities?  I have painfully neglected Fly With Hope but NOT anymore!

Drumroll.... I've decided to incorporate my YouTube videos into this blog! (Scroll down to see two of my videos below!)  I had jumped over to YouTube and started creating video content as I found it easier to talk to a camera than to write. But I will be using this blog to expand on what I am sharing on YouTube as well as give some bonus details about the videos. YouTube has become a place where I update my loved ones and friends on how I am doing as well as share with others who have chronic illness and chronic pain.

My vlog, Wahle Warriors, is a channel where I share with you all what is happening in my life on a day to day basis! This channel is geared toward my loved ones, friends and anyone who has to warrior through anything, especially chronic illness & chronic pain, and looking to live a fulfilled life. I share about how my chronic illness and chronic pain affect my life while still having a good life!

Intratympanic Gentamicin Injection - Meniere's Disease Treatment | See Footage! {10-06-2017} shows when Kelly just recently got a procedure for her Meniere's disease.Watch me get get her 4th intratympanic gentamicin injection, with actual footage of the treatment in the video! I have been having a rough recovery from it as I relearn to walk as my balance system was completely thrown out of whack. The purpose of this procedure is to kill or at least harm my diseased vestibular system chemically in order to reduce the out of control vertigo that affects my quality of life so severely. This is the 4th time I've had this procedure and the length of time it has helped has increased with each treatment.



Chronic Illness Reality is a YouTube channel that has many videos already but the upcoming videos are going to have an more focused vision.  My videos are intended to help people with chronic illness to live a fulfilled life with chronic illness through tips and tricks videos, talking about chronic illness hot topics, as well as answering viewer questions about specific chronic health conditions. So far people have been asking a lot about Meniere's disease as well as IBS because I have a video showing when I experienced attacks.

Chronic Illness Has Taken Over My Life | I Need Help is a video where I share about living through chronic illness when it feels too challenging. You can hear about the tools I use to maintain a sense of control even when my chronically ill life feels out of control.


QUESTION OF THE DAY: What do you do to regain control of your life when chronic illness has taken over? Answer in the comments here or on the video!

If you are new, consider Subscribing to Kelly's YouTube Channels + click the bell to get notified when Kelly posts!
Chronic Illness Reality HERE
Wahle Warriors HERE

Hold onto Hope, Love this Day & Remember YOU are NOT alone!
-Kelly

Wednesday, March 8, 2017

Cutting the Ribbon to the Next Season of Life

Imagine confetti coming out of the screen and you suddenly hear your favorite song of celebration in your head. In this moment, its a tie:"Overcomer" by Mandisa and "Roar" by Katy Perry as it was what I danced to as I relearned (for the second time) how to walk this past December/January. 

You were meant to be HERE reading this post at this very moment. Whether you are meant to be here to share with me your own insight and story or whether you are meant to take something away from what I have to share with you, I am happy you are here to witness what is not only a ribbon cutting to the next season of my life, but also what could be one for us, in our friendship/connection, you in your own life with yourself or with someone else. The big red ribbon & bow slung in front of this next season isn't actually red but a crazy multicolored print much like some of my crazy socks! 

Do you have your scissors ready? This is a community thing, so try to find your elusive pair of scissors as you are going to be a part of the ribbon cutting at the end. Yes, you: family, friend, stranger, soulmate, kindrid spirit, Instagram friend, YouTube Subscriber, Blog reader, Twitter follower, WegoHealth Twitter Chat participant or found-this-post-by-accident individual--I need you all to find those scissors so we can cut up this ribbon together because by the end of this multi-part blog post, I would love to know that you all will be joining me in tackling this crazy life by living life to the fullest, finding the best quality of life we can as we rise above the circumstances of our lives whether they be related to our physical and/or mental health,  relationships, family, inner battles (addictions/weight), finances, loss of loved ones, fill-in-the-blank.  Let's do this together! No one gets left behind or forgotten. You are not alone simply because you are not alone in your circumstances but also because there are people that care...

SELF-CARE
Before we go on, and I share a bit of what has happened in my life, let's all turn on a timer on for at least 30-60 seconds and wherever you are just sit back, close your eyes, consciously relax each of your muscles and take some slow deep breaths. Once the timer goes off, reset it for another round or grab a pen and paper, your smartphone, a tablet or a video recording device and take down/record a quick journal entry. You can think about it in your head, but actually writing it or speaking it is communicating it and in my experience, it makes it more powerful. 

As you write or speak, connect with where you are in life at this moment. What are you feeling physically? What are you feeling emotionally?  Oh how easy it is for the day to fly by without us taking this precious time for ourselves. So take this minute and check in with yourself, offer yourself a word of encouragement and write down one thing for which you are thankful and if you are so inclined, write/say a prayer and/or a verse or quote of inspiration. This self-care practice is quick and easy and can bring life back when life circumstances have worn us out. Even if it is uncomfortable or unfamiliar to think about these things, give it a try and keep trying. We learn as we go. 

But before we can cut the ribbon, I have to re-introduce myself. I have been in a place of isolation for the last few years and as I come out to the world again, I want to share with you what is new and different about me so you can know me. My health situation has changed and I have a new plan for living life to the fullest, rising above the realties in front of me and pursuing the best quality of life I can have.

I am not the person I was four and a half years ago and I'm not even the person I was two years ago. I have changed significantly in how I treat others and myself. I ditched the temper, grew grace, embraced life experiences I never expected to have and stopped having expectations of other people, well, unreasonable ones anyway... and I'm still learning. It was four and a half years ago when I started to withdraw from the world, but I went into a deeper isolation toward the end of 2014.

WHY DID I WITHDRAW FROM THE WORLD?
1. I couldn't handle it. I was going through issues in my personal life, and in addition to my health that was challenging, I did not know how to cope with everything including interacting with family, friends and strangers. I intermittently talked with one person aside from my mom. And my husband, George was the only person I have been seeing for months and months at a time with doctors and strangers at the theatre interspersed in between. I responded to prayer requests and tried to support others when I could, but I really did not have the ability to share about my own life or be very present in other's lives. It broke my heart, but it was my reality.

2. As my health conditions changed and new disabilities became reality, I could not face them. I lived them, but I was in denial. I also could not face sharing the disabilities with my family. I already felt like my health issues were a burden to them and I simply did not want to hurt them anymore. So, I hid. Also, I hunkered down to try to weather the storms that were coming down hard personally. 

WHY COME OUT OF ISOLATION NOW?
1. Enduring four and a half years of change and growth with George after his suicide attempt has been much more of a challenge than I ever anticipated. If learning my husband attempted suicide is new to you, please check out these two posts: Trauma 22 Years Apart My Brother + My Husband &   My Husband Tried To Take His Own Life.  I let go of everything I ever thought could hold me together and clung to my faith in God as the wind thrashed me around.

Nothing else other than my faith in God as my foundation got me through. George is in a much healthier place and thus we are finally at a place where the healing is happening. Therefore, I am finally in a place where I can open myself more to the world and start participating. Of course I still have limited spoons (units of energy) but at least I'm capable of putting myself out there again and starting to be a part of other peoples's lives, which I have missed so much. 

2. My disabilities grew so great that I could not hide them anymore from my family.  My family knew some of my limitations because even for short visits, they rarely see me as my body's symptoms are not predictable.  But, they did not have stairs in their house so they never knew I was struggling with them. And when they came to visit, I was consistently too ill to leave the house with my family, so they never witnessed my stair difficulties until this past Thanksgiving 2016. It can take 30-40 minutes for me to ascend the stairs with inflamed hands and knees and/or with balance & vertigo difficulties as well as weakness.

I began revealing my needs and disabilities to my family including my need for an electric wheelchair to get me from point A to point B, which my immediate family became familiar with during our trip to Walt Disney World Christmas 2015. In June 2016, at Wrigley Field, a baseball stadium that does not have to be ADA (Americans with Disabilities Act) complaint, George, my dad, my uncle and a stadium worker were my muscles in getting me up and down stairs. My dad helped me into our blue Toyota RAV4 and even belted me in as I had no strength left. Amidst the most incredible time watching the Cubs, who went on to win the World Series in November, play from dream seats as we celebrated my Uncle's birthday, my needs were a touch of bitter amidst so much sweetness.

But as I revealed my needs and disabilities in front of my family I had to start facing and accepting them. Coming out of denial, accepting and seeing that I need help and now coming out of isolation are all wins for me. I wish things weren't they way they were, but I had to walk through that desert. I'm not sure if I'm to the oasis yet, but at least I'm consciously walking toward it with full awareness of what is happening in my body and my life.

In the upcoming posts, you will read about the current state of my health and also how my life is different in ways you might not know or expect. I look forward to cutting the ribbon together at the end of this series, so make sure to stay tuned!

Saturday, December 3, 2016

Not MY Day. His.

Thursday was a challenging day for me (the whole week has been)- but it was worse than usual- a day where I was so ill that many factors kept me from functioning. Nothing went how I wanted/needed. I couldn't get up from bed ect ect. I needed complete assistance to walk to the bathroom; couldn't eat because of esophageal problems-other stuff I won't go into. George was texting me from work (45 min away) asking for updates on how I was, and I could tell he was feeling a bit stressed/helpless (he took extra self-care time once he got home). As I was asking God how to support George, God reminded me that my life is not mine-and that today is not my day. It is Jesus's life and His day! Jesus died for me to have this day- even if it feels like a worthless day where all I did was lay still on my back in the dark of my room and keep falling asleep as I attempted to edit video completely unproductive and extremely unwell... Wow! That brought me so much joy. It was/is Jesus's day first and foremost! And though every day should be; we officially surrendered the day/gave the day, to God & kept repeating it. My life is not my own- and sometimes it seems (because it is like this in society) like the people who are healthy-their lives would be the valuable ones to Christ to have surrendered because maybe they have more abilities and less limitations.. But no-my life on my weak day is incredibly valuable to God and WOW there is so much Joy in that! How can I NOT smile! Praise God for loving us! Thursday reminded me that every day belongs to Christ and no matter what I can or cannot do, I am enough and worthy and loved. And I can have joy because of that.Thank you God for your mercies.

(I originally posted this blog post by complete accident, as I thought I had saved it for myself for later-which I often do. It wasn't until a friend wrote me about this post that I discovered I must've accidentally made it public. Though it was meant for myself, I am leaving it up unedited/unchanged as the message gave me new perspective that I don't want to forget and I hope all with chronic illness/pain learn. We are JUST as worthy as those who are healthy. Our value does not lie in our health or what we are able to do. We are enough, just as we are. -Kelly)

Wednesday, April 13, 2016

#ThankfulThirty

Please watch the first video as it describes some of what you will want to know about #ThankfulThirty, which is a term I created.
*Make sure to press Pause at the end of the video or it will go on to others!!*


The video tells it all. My apologies to my deaf and hard of hearing friends. I doubt that I will be able to CC my #ThankfulThirty's because I don't have the spoons.  In the video above, I share something called "Thankful Thirty" that I had thought about doing a while ago, but I never really started doing. The #ThankfulThirty's came out of a realization that there is something to be thankful for in each day and I needed to ponder it and then share it in some way.. I started saying what I was thankful for on a daily basis via my YouTube channel (though I haven't done it everyday since I started 11/18/15). For those who are deaf or HOH, perhaps you could write for 30 seconds daily about what you are thankful for and share it with someone via text, email, PM or keep it to yourself! Be creative! If doing a video, the idea is to limit the video to around 30 seconds; however, you will see I go over 30 seconds most days!!

I have been surprised how being thankful changed my ability to float through the difficult times I have been having. It has kept me looking toward the light rather than the darkness.

In the very first blog of content that I wrote in June 2008, I discussed a book I had been reading called The Gift of Pain. Dr. Brand and his coauthor, Phillip Yancey wrote in The Gift of Pain:
Gratitude is the single response most nourishing to health.
So what stands in the way of being thankful, appreciative or having gratitude other than thinking it is a "cheesy" thing to do?

Daniel Hurley, MD, in his book, Facing Pain Finding Hope: A Physician Examines Pain, Faith and the Healing Stories of Jesussays "We cannot be grateful for what we cannot recognize." Sometimes those of us with chronic illness can be so caught up in the life we are leading that we cannot see that there ARE things to be thankful for, much less tune into them and embrace them.  Pain, anxiety, depression, chronic illness, are all heavy wet blankets we must throw off or at least peak out underneath so that we can recognize what we have in our lives for which we can be grateful.

For me, sometimes the enormity of all the challenges I'm navigating feels so great that I struggle to find something to be grateful for even though I know being thankful is incredibly important to my well being and I have a multitude of items/people/places for which I have be thankful. Just recently, I was thinking about how tired I was of dealing with so many challenges alone and I was so distracted, I started the camera before I even knew what I was going to say and you can see it takes me several seconds to find something to say and I wouldn't say I seemed too thankful, what do you think?

*Make sure to press Pause at the end of the video or it will go on to others!!*


How about that fake smile at the end?

In Facing Pain, Finding HopeDr. Hurley continued,
Focusing beyond terrible circumstances allows us to see. If we cannot see, we cannot recognize a gift. Without this openness, vision and recognition, we express no gratitude. Rather we continue down the road, lonely and lamenting loudly. (pg.138)
Is it important and even healthy to lament? Yes of course. But what is the ratio of lamenting our situation to the ratio of our thankfulness/joy that we express? To survive, thrive and even enjoy our lives when they are full of constant chronic pain or chronic illness, we must fight to be thankful in general more than we are upset/angry ect. At least that is what I have learned from the last ten and a half years of living though chronic illness. Focusing beyond allows us to see.  I invite you to check out this video I made in October 2015 about "My Choice to See" discussing the difference of being thankful FOR everything VERSUS being thankful IN everything.


In Facing Pain, Finding Hope, Dr. Hurley says, "Gratitude for even little things brings us closer in touch with others and with God." (pg 138). Having chronic illness has made it both harder and easier to find little things to be thankful for. Whether you are a person of faith or not, being thankful can bring you closer in touch with others because whether or not they see/read your #ThankfulThirty, those who are close to you will notice a change in you because being truly thankful truly changes the spirit and the heart of a person.

I will admit that my second "#ThankfulThirty" video is a bit embarrassing because I am thankful for this silly monster pillow. You'd think I'd want to start this endeavor out with something stupendous, but I chose a monster pillow.

So what are you thankful for? Though I have posted each "ThankfulThirty" on my YouTube channel HERE, they were for me and not really anyone else. Although I am happy when someone happens upon them and finds camaraderie, inspiration or encouragement.

In 2015, I did a lot of work on myself in changing how I approached my health issues in my mind. The work I did was so significant that after twelve years of having Generalized Anxiety Disorder, it was finally managed and I no longer have anxiety! #ThankfulThirty is just one part of a whole of looking at my health in a completely different way. I chose to see things differently, to appreciate life, to find joy, and many other ways of approaching chronic illness that I look forward to sharing in future posts. And I look forward to learning how you all do this too!

#ThankfulThirty is not just for those who are chronically ill as everyone can benefit from being thankful! I hope you try out doing a #ThankfulThirty whether it be by video or written. And perhaps go even further in trying it out for a prolonged period of time if only just a month and evaluate whether or not it was of benefit to you. As I shared, some days, being thankful has been hard but I'm glad I have stuck with it. God has used it to help to change my life.

**This post is dedicated to Eva Markvoort who changed my life by sharing her story and led me to the idea of #ThankfulThirty. You can see Eva's story in the documentary 65_RedRoses which is available on many streaming platforms including iTunes, Amazon Video, GooglePlay & others. The movie's trailer is HERE.**

Friday, February 5, 2016

Heart Broken Part Two

Continued from Heart Broken Part One:

Shock consumed me for a while as my brain couldn't accept that George had attempted to take his own life. George knew of my intense fear of him dying, so you can imagine what I thought.  In the beginning it was practically impossible NOT to take it personally that my husband tried to leave me through suicide. How selfish was that?  Soon after first seeing George on life support for the first time, I learned he had never got COBRA going even though he had been laid off for many weeks and he had only worked at his new job a couple of days- not long enough to get any anything going. When sorting through disorganized piles of paperwork with my dad trying to get COBRA in order, I found that just like he neglected to get COBRA going, he had neglected to sign the paperwork to continue his life insurance-the one he  had carefully planned for me. By guessing the password, I was able to get health insurance going and my dad mobilized attorneys to figure out what our options were if the worst happened. Once George woke from the coma- that all changed. What didn't change in the moment was my fear. My fears of abandonment were even greater. After being discharged from the behavioral health hospital, George signed and overnighted the paperwork and when the letter arrived in the mail saying the life insurance would be continued.  I was relieved. But the fact he hadn't re-started the life insurance before he attempted suicide was something I struggled with for a while. I'm human.

We went out of town on a vacation the year to date of his attempt and returned to a pile of mail with multiple letters reading his life insurance policy that he had paid into for 19 years was no longer in existence because George had neglected to pay the premium through a misunderstanding on George's part; that coupled with the severe depression meant no more life insurance. By that time, I had worked through my abandonment issues and though I was confused and frustrated, I ultimately knew that the best response was compassion and grace.  George had severe depression which can make you feel like you are walking through mud with a wet blanket covering you and anything and everything feels like it is a million times harder than it actually is. It is a horrid illness. It doesn't just affect the person going through it:  it is a family illness. The reason us sharing this is that George and I know others go through this.  Forgiveness is necessary in any relationship, especially a marriage. But when depression is involved I've learned that I need to deal with my emotions- whatever they may be- but what I need to share with George is compassion and grace. I share this because I didn't know that in the beginning and I made a lot of mistakes. I would tell George how deeply hurt I was and boy did that have the opposite effect of what I hoped. Yes, it is important for me to express my emotions-but in my journal or to a therapist or a close friend or family member.

As an aside. When someone attempts or dies by suicide, there is always the question of  "why" did this person do it. George is here and he is surprised by his attempt.  Suicide is not rational. In George's case, he had undiagnosed severe depression; it wasn't rational decision making as hard as that may be to believe/understand. Trust me, I've had years to work through this. It also took me a while to learn the suicide attempt had nothing to do with me or him leaving me: again it was severe undiagnosed depression. Depression is the culprit-not George. I know I'm off topic but this needs discussion. It is important to share that I have worked through any feelings of abandonment or pain or anger I had about his attempt. I have a different viewpoint and understanding. George needs me as his cheerleader and friend. Truly letting go of expectations and sharing grace for anything: small or large is how I attempt to be as his wife. We live in the moment, trying as hard as we can to be a team and  looking toward God while trusting His guidance.

Somehow the two by four to my head of George's suicide attempt didn't change my priorities as far as God/George was concerned. It took about fourteen months until. I felt the full impact of that two by four in November of 2013. And then everything changed in my heart.

It was my heartbreak over George's suicide attempt and the life we were living 14 months later woke me up to the realization that God had been heartbroken over me for along time.   I had broken my promise to God in putting George above him. Convicted, contrite and heartbroken myself over my choice, I chose a different path.

There is a hymn called My Hope is Built On Nothing Less which I linked to a YouTube version I like that has the lyrics written on the screen. The refrain says
On Christ the solid rock I stand; All other ground is sinking sand; All other ground is sinking sand.
The song reflects how God is the only one I can 100% count on though that doesn't mean he doesn't go silent. It means my view point has changed which I am looking forward to sharing. Let's face it- people cannot always be there for us! I am going to be sinking sand for you. You are going to be sinking sand for me. It doesn't mean we can't care for one another and support one another, but we can't 100% rely on any human. Even though I had an active relationship with God, choosing God instead of George as my foundation has changed me. Accepting that George couldn't give me what I needed, that I needed to accept his short-comings and throw my expectations out the window saved our marriage. And when I have found heartbreak in my relationship with George, I had/have God's support to keep me full of hope and joy. I have grieved and had few meltdowns- but I also had someone to run to who unconditionally loves me  I feel secure in God. And when I'm having a severe health issue, George will say "God has you."

By making God my priority and foundation, fear has melted away. Saying "Drive Safely" was so ingrained in my routine hat I trained myself to say something different that wouldn't have a meaning that could imply control. So, now we say "See you real soon!" which is a Disney saying.

As my life has been focused on God these last couple years since making the foundational change, I found peace in places I didn't expect: namely suffering. Unfortunately I had been on a mediation that I did not realize was clouding my brain and making cognitive tasks quite difficult; as of the Summer 2015, I'm no longer on the medication and boy do I feel completely different! I began writing in my head again. Symptoms of Meniere's disease kept me physically disabled and unable to write last fall.   I uploaded a lot of videos to my YouTube channel about what was happening in my life  and a little thing I started called "#ThankfulThirty" both which I can't wait to tell you about!

I have so many plans for writing including discussing my health, treatments I've tried and my personal life including my faith. Aside from George's suicide attempt, 2015 was the hardest year for me yet & 2016 has started as a huge challenge. But through hardship, I grow closer to God and also into he person I want to be which includes being anxiety-free! In late 2015, one of my physicians told my husband "You have a new wife." Another who knows me very well expressed joy at my new outlook.

My present joy is that you are reading this post and God has given George and me the strength, guidance, direction and ability to write it.

[Note: George read and approved all that was shared in this blog. It is our intention to help others in situations similar to ours by sharing our experiences. I will never share anyone else's experience without their expressed approval at every detail.]

Thursday, February 4, 2016

Heart Broken Part One

While catching up on the current season of the tv show, NCIS, (10/27/15, "Viral"), the girlfriend of one of the main characters said: "Everyone's greatest fear is losing the one they love the most. "

I can't tell you when I started fearing losing George, but I can tell you that the sicker I became, the more hospitalizations and diagnoses...the more I was terrified of George passing away in an accident  or from a health issue. It became so wild that I could not let him leave the house without me saying two words to him: Drive Safely. If I didn't say it, I freaked out; I chased after him: sometimes down the driveway or frantically calling on the phone. I knew my words couldn't prevent anything but there was something inside me that felt those words had control.

George had become my foundation. He supported me financially and provided food, shelter & healthcare. He was my best friend. He knew me better than almost anyone else. He took me to every single healthcare appointment. I leaned into him heavily for emotional support and even would ask him what he thought: "Should I take the med now or wait til my symptoms get worse?" He physically helped me when my health was poor. He was great at listening and just sitting with me in silence during long hospital stays. He was there for me when others bailed. I trusted him more than I have ever trusted anyone in my life except my parents. I knew I had it good: a man who cared deeply about me, a man who I could trust with anything and everything, a man who was there for me. And everyone who saw him with me, saw him take excellent physical care of me. And if I had an anxiety or panic attack, he knew how to calm me. He was my rock.  He'd say: "I've got you. You are going to be okay." George struggled with demonstrating compassion, but I told myself what he gave me was enough. I needed him...or I thought I did. For Christmas, after our first full year and a half of marriage, I gave him a "Superman" outfit ornament. He was my Superman.

To understand my story, you'll want to know something of my faith, which is why I'm sharing a very basic version that is leaving a lot out, but hopefully will be sufficient for the purposes of discussing Heart Broken. Sin is an action that goes against God's law.  As humans, we sin pretty much every day of our lives and unforgiven sin keeps us from having a relationship with God. And God wants a relationship with us: to love us. My faith is Christianity and ultimately that means that Jesus came to reconcile us back to God as there is no way for us to do it on our own.  God sent his son, Jesus, to earth with a purpose. Jesus was fully human and fully God. He learned what the human experience is like firsthand. He needed time alone. He prayed. He was overwhelmed. He was tempted. He was angry. He loved. He hung out with anyone and everyone.  At age thirty, he started teaching. The plan was that Jesus was going to be the ultimate sacrifice by taking the punishment for every sin there ever was and ever would be and pay for that sin with his life so that we humans, if we so desire, can have a relationship with God. The punishment for sin is death and Jesus took my place so that I could have eternal life-more simply a relationship with God. And what do I get out of a relationship with God? Well-everything really: unconditional love, forgiveness, peace, confidence, hope, rest, promise for my future and among many other things no condemnation. Many think being a Christian is about "going to heaven" and yes, my relationship with God will continue after my physical body dies. But, ultimately, my faith is about a relationship with a triune God who loves me unconditionally.

By the time I met George, my faith had been the most important thing in my life for fifteen of my twenty-four years and once George and I were committed, I promised God that I would NEVER put George ahead of my relationship with him. And before we became engaged, my promise had been tested and I had proven I would put my relationship with God before my relationship with George. No one had nor ever would get between God and me.

I became severely ill ten days after George and I became engaged. I experienced physical pain and suffering during our engagement and especially during the first two hospital stays before our wedding that blew my mind.  Even though I was sicker as a child/young adult than the average individual, I hadn't been as sick/suffered like other children such as my husband had. I had eight sinus infections the second year I worked professionally as a speech language pathologist, But at twenty-five, I had never experienced the extreme level of physical suffering I was navigating. Naively, I thought that God allowed you to die once you hit a certain level of pain. I also naively thought what many think until they are in the situation themselves: that doctors have answers, that being hospitalized would heal me and that some day we would find a treatment that worked. We really thought I was going to get better-back to the healthy 25 year old I had been. I always thought at 36 I would be parenting. Early on I would be asked when I thought I'd be well enough to return to work or to volunteering and then I remember noticing those questions weren't being asked anymore.. When my journey in life took a path I hadn't expected, none of us (family, friends, co-workers) ever would've believed what was to come over the next ten plus years.

The pain and suffering and illnesses and hospitalizations and medications side effects and the loss of friends and the judgement of most every person I knew: from family to friends to people who didn't even know me made a huge dent in my relationship with God. I had been a determined, busy young superwoman who was very involved and active. If you know anything about the paternal side of my family, you know that we push ourselves to our limits and beyond: super achievers who say yes even when we should say no. And when my body said "STOP," the silence in my life was deafening. I had never heard it before. I am glad to know it now because there is so much life in the silence, but I hated it then. As often happens when someone experiences pain and suffering, God had gone silent. That had never happened to me before either. My pleas for mercy, my screams for healing as I lay alone on the cold kitchen floor, my efforts, my prayers, my dedication to getting better, going to church to be anointed with oil by a church elder, being prayed over by so many people... and the God I had always had access to just wasn't answering. Or perhaps I just didn't recognize him through the pain? Regardless, I was hurt at what I perceived as God's silence.. The song, The Silence of God, by Andrew Peterson put it better than I ever could;
So when the questions dissolve into the silence of God, the aching may remain but the breaking does not. The aching remains; the breaking does not in the holy lonesome echo of the silence of God.
I was deeply heartbroken by God's silence because not only was he not healing me, but he wasn't responding to my unfathomable pain by at least making it tolerable. Each moment was a challenge where I felt I was physically pulling myself into the next moment. Where was the comfort God promised? The guidance? I felt lost. And I asked the inevitable question : WHY?!

God had seemingly taken a personal day. But George was there. I still had an active relationship with God, but he was number two. Promise broken and at first I didn't care. I needed someone & George was present. God was where? I leaned on and trusted George instead of God and ignored the danger signs and red flags. But God was silent. How much help is that? George was solid; my knight in shining armor and I was so thankful for how he cared for me and for how he had stayed.

Taking care of my health needs made me feel very loved as I had struggled through new diagnoses and surgery. I had leaned into George more than ever. Around five years in, in 2011, though George was a fabulous caregiver of my physical needs, in my experience, he has always struggled with giving compassion/empathy. Additionally, I could no longer ignore how neglectful of me he had been in our marriage. He had become distant and detached from me and life and later on I found others had felt that too. I felt ignored and only received his attention when my health was worse. I told him I didn't want to be the "sick one" I wanted to be a wife!  I value honesty above all and I speak my mind and ask straight forward questions, though in the last few years I've learned how to turn down the intensity and bluntness. I asked George about what was going on but he didn't really have any answers. Through the years George and God had flip-flopped as who was #1 and who was #2 on my priority scale. I spent an incredible amount of time with God-because I had time to do so-but when I was suffering, I called out to George- not God.

2012 hit us hard: Two weeks at Mayo Clinic; my beloved dog Knightley passed away suddenly in the worst way; George was laid off his job of 18 years & shortly after I had a very early miscarriage-both sets of parents knew we were pregnant so it was a loss as that would be the only grandchild for either to date. We went to our favorite vacation spots to try to find some happiness and joy: WDW and OBX. But shortly after we returned, George shocked us all by trying to kill himself. In a coma, seizing, and on life support because he couldn't breathe for himself. I had found him in time though we did not know it was an attempt until he came out of the coma and told me. Even after he came out of the coma he was medically fragile. The doctors say it was a miracle that he is alive and functioning as they don't understand how he survived. And I'm pretty sure it had nothing to do with me obsessively saying "Drive safely" every day for years.  I'm not trying to be funny or ironic. I had been an idiot.

**To Read the Conclusion: Heart Broken Part Two click here.**

Tuesday, October 6, 2015

I See You.

Most people who are chronically ill to the place where they are disabled feel especially as time has gone on that not only is their illness invisible to the outside world but that they themselves have become invisible too. They We often feel our fight, our struggle, our lives have become invisible to others. I have a friend that if she writes me, it is only about her and though I may talk about my health, she never acknowledges it and never or very rarely asks any health related questions. Like many her "How are you?" does not mean she wants to hear about my health and as my health dictates my life course-even if it doesn't dictate my attitude or who I am, it is a huge part of my life. And I feel completely ignored. I am not sure who I am to her and I'm not even sure if she wants to be engaging with me or thinks it is the Godly thing to do to keep talking to me. But it has been painful.

In the years since George attempted suicide, I have learned not to hold grudges or have expectations of others but simply receive. I have also learned very painfully that we each bring our histories (our issues) to the table and what feels like her invalidation of my being may be part of something in her life that she is bringing to the table. Putting time into trying to see the other person's perspective has changed my relationships even if there are very few people present in my life- the ones who are absent are the ones who I probably the relationships that I work the hardest at so that if they ever are reconciled or reconnected, I am able to step into them with a quiet heart and open mind ready to listen.

Most of us who are chronically ill-especially the ones who are severely chronically ill and have multiple illnesses to navigate feel alone and invisible. Something George and I have said countless times over the last three years is "If people ever knew what we really go through..."and then we move on because if we linger, we risk going down a dark path of "why another thing and another thing?!" Oh he is so tired. 

Life changed when I realized George was chronically ill-it was probably that first year after his attempt and I was like- oh my goodness-he has been severely ill since he was a boy. And every week a new epiphany of how he as a little boy, a grade school boy, an adolescent boy, a teenage boy, a college-age young man, a man in his early twenties and thirties when I met him. As long as he can remember--since he was that little boy, he has dealt with pain adults cringe to even contemplate much less endure for an hour. He dealt with it often and without relief and without diagnosis. And as any adult would develop co-morbid depression, a little boy who learned to cope by pretending life was something it wasn't was severely depressed throughout his life. Jaw dropping revelations of severe unrelenting pain and living most of his childhood/growing up years on crutches because of severely disabling arthritis in his knee.Umpteen knee aspirations and a few knee surgeries. It wan't until his late twenties that an emergency surgery on his abdomen discovered the Crohn's and changed a rheumatoid arthritis diagnosis to Crohn's related arthritis.  The newer medications of IV infusions of Remicade changed his life significantly even though things were just significantly better-not cured or "average." And that depression was always there...always. I thought he was laid back/easy going/lazy. No. He has been depressed his entire life. And even when he was using crutches for the arthritis and even when he was curled in a ball with the Crohn's, it was all invisible. He was fighting a silent fight that finally became unmuted after his almost deadly attempt and boy am I glad for this second chance. To quietly listen to him tell me about his pain whether emotional or physical and hear him vocalize how proud he is of himself for speaking the pain out loud and letting me know. The colors of his life are filling in at 43. And they are challenging and beautiful. 

The most important thing I can do for that man is to tell him "I see you. I hear you." I've texted with a few friends lately-all with multiple severe chronic illnesses -disabled -we areconnected to hold onto hope for each other. Connected so we can listen to each other's pain. Connected so that we can pray for and build each other up. Connected so we can validate each other's experience and say "I See You." 

Those of us with chronic invisible illnesses don't want our struggles to be invisible. I struggle with this because I do not want pity and I am not a victim to my circumstances. But I want to be known. I have a few friends who no longer have their beloved parent in their lives and it is heartbreaking because they still dial the number because parents can be those only people who wanted to know their struggles. I hear the brokenness in this group of people who are really severe including George because in some way we want someone to care about the hell we face each minute of every day without break and that isn't an exaggeration. 

I shower about three times a month and a couple months ago and listen to my KLOVE app when I heard this song called "Losing" by Tenth Avenue North and figured it was cheaper to buy the entire album than that song and another song on the album lives in my mind. And a verse just was rolling around in my head and usually I pick up my Canon Powershot to video journal about it. But I felt I wanted to share what I was experiencing as I have many backlogged videos-several of them happy ones that I can't wait to share; I just haven't had the chance yet.  And something happened. I don't now how it did--I just followed my heart and though it makes me feel vulnerable to share, I am sharing because I feel like it represents what I know many of my invisible friends are feeling. It is personal but I watch it and see others who are suffering. And to those of you who are dealing with an invisible chronic illness, this is for you. I am not under any illusion that because someone is healthy they don't struggle-we all do. We all want to be known and seen and validated and heard. But the longer I am chronically ill, the more alone I have become. I look to my left and to my right and the bleachers are pretty empty. Illness isolates me and this is why I want you to watch-becuase I want my voice to be heard for myself but more so for George and for anyone who has walked this way.  

I SEE YOU.



FYI: I only share other people's stories with their permission. George approved  and contributed to what I wrote about his story.