Published by Chronic JoyMinistry - https://chronic-joy.org/back-to-blind-finding-spiritual-sight-sea-darkness/
BACK TO BLIND
After a long day with an aching eye, going from a walk-in clinic to the emergency room to the specialist’s office, I was told to remove my contact lenses for the foreseeable future. I sadly dug into my purse for my magnifying eyeglasses that dig into the temples and slide off my nose; glasses that give me about a foot’s worth of vision. I felt my heart sink and sighed, resigning to the reality I had feared. I was back to blind.
BORN BLIND: IN THE BEGINNING
Over 28 years ago, my vision journey began, entering this world without sight. Taking their infant daughter, my parents found great specialists at one of the best hospitals in the country to begin the first of many attempts to restore my vision.
After removing the initial problem from both eyes, the path towards sight only began. Doctors experimented with eye drops, contact lenses, eye patches, glasses and surgeries to give me the best chance at a life with as normal sight as possible.
From one month old, they would hold me down and place hard plastic contact lenses upon my eyes. A practice that would make our neighbors question our home environment due to the morning and nightly shrieks coming from our house.
RESPONDING WITH HUMOR INSTEAD OF ANGER
Thankfully over the years it became routine and the ritual had become one I was familiar with. As a little girl, they also tried to strengthen one eye by patching the other. For several hours a day I would strain to see out of my weaker eye and simultaneously try to ignore the snide comments from onlookers.
Do you have an eyeball under there?
This question came from one of many curious children and by this point in my life; I had chosen to switch from anger to humor in my responses.
No, I don’t, but I do have it here in my pocket!
I can still see the horror on the kid’s face as he bolted down the hall. He never made eye contact with me again.
BORN BLIND BUT SOME SIGHT REGAINED
Over the years, with corrective surgeries and medical advancements, I grew to have fairly normal (corrected) vision and was able to lessen the frequency of my trips to the doctor.
Although minor surgeries were needed every few years, we praised God for the incredible sight I regained. Contact lenses, drops, and check ups became routine and I was even able to get my driver’s license. While never being cured, I was stable and simply went about my life.
BACK TO BLIND – EVERYTHING CHANGES
Until one month ago.
Sitting in the office of the on-call specialist, I was crushed to hear that my eyes simply had had enough. Eyes which were stable for many years suddenly were deteriorating and in desperate need of rest and healing. Taking away the tools that gave me one of my greatest senses left my head spinning with questions and anxiety.
How did it come to this? Everything had been fine for years! I had a check up not long ago! How could this happen after all we’ve done? However, my pleading and questions did nothing to change the fact that my eyes were not stable anymore and I prayed for the courage to ask my most ardent question.
Am I legally blind now?
He answered as quickly as blinking. No hesitation or even a glance up from his desk where he was vigorously writing notes.
Placing my only source of sight on my face, my whole world, as I knew it had changed. Driving, cooking, caring for my kids, it all looked impossible now. All those years of struggle and pain to give me a future with sight seemed to be going down the drain. I was back to blind.
These two simple yet powerful words can change everything. Through all the tears, grief, anger and sense of loss I’ve felt over my eyesight, there is a grounding in my soul. It’s a source of strength that has been growing day by day, as I face my new reality. While I still feel all the emotions and desire to simply slink into despair and self-pity, a small still voice pushes me forward.
This voice tells me to not give up and give into the darkness, to fight for independence and stand firm on the truth of who I am in Christ. This strength is not some Christian cliché that is said to sound spiritual and humble, but is instead is the bewildering power of the Holy Spirit from of which I could never conceive. It is in this power I can put my trust, knowing it’s not my willpower or positive attitude that will undoubtedly fail me one day, for in my strength I can do nothing.
BACK TO BLIND – THE ROAD AHEAD
Though I am back to blind, I do not know the future of my vision. There are several treatments we are looking into and I am immensely grateful for my big “coke bottle” glasses that allow me to see the screen before me and other things within a short range. However, it is possible that this is permanent and it’s scary and sad. It makes me wrestle with the hard questions like: Why did we go through all that pain and struggle over the years only to have the rewards stripped away?
I do not know the answer and may never fully understand my physical disabilities on this side of eternity, but therein lies my hope. Eternity. Not just for a healthy body with perfect eyesight, but remembering that this life is a grain of sand. Yes, it contains heartache and brokenness but that doesn’t change God’s plan for my life. In fact, this may bring about something great for God in my life!
So for now I will cling to eternity and remember the words of Charles T. Studd:
Only one life, ’twill soon be past,
Only what’s done for Christ will last.
I may be back to blind, but because of Jesus, I have all the sight I’ll ever need to live my life for Him.
His divine power has given us everything we need for a godly life through our knowledge of him who called us by his own glory and goodness. ~ 2 Peter 1:3
In 2016-2017 I was pregnant with our second child. We were greatly surprised to find out we were expecting again while our eldest (Gabriel) was only 6 months old.
My first pregnancy was hard. I had extreme morning sickness that made me very sick, requiring multiple hospital trips for dehydration. I was always nauseous and throwing up, struggled with my liver, and in general, always felt terrible. Of course on March 15th 2016 when our Gabriel came into the world via c-section, everything was totally worth it.
Six months later, I had that familiar nauseous pit in my stomach and didn't fancy the thought of eating. One morning at about 5am, I got out of bed and took a pregnancy test buried deep in our bathroom cabinet. It was positive.
This pregnancy started out like my first, very sick, and extremely tired (especially having a baby to take care of on top of everything). However things escalated quickly and this pregnancy became dangerous. Our little baby inside me was growing normally and healthily but my body was falling apart. I was too sick to get off the couch most days, let alone care for Gabriel. My husband Adrian was home as much as possible to look after both of us and we really learned about relying on God's provision for us during that season.
Of the many hospital trips I had to make during those 9 months, one stands out. I had just passed the halfway point (20 weeks) and woke up vomiting so hard that blood began to pour out of my mouth. I had to get help right away. Thankfully just up the road, dear friends of ours rushed over to watch Gabriel so my grandparents (who also lived nearby) could drop me off at the hospital.
I felt so bad for my sweet grandparents in their 80's to see me in such a state. I think they were a little traumatized, but I was so grateful they rushed me in and stayed by my side until my husband and mother could get to me. I was quickly assessed and scanned. Baby was fine but I had torn my esophagus and stomach lining, my gallbladder was inflamed and my blood pressure was in the toilet. I was sent to the step down ICU at Grand River Hospital and got hooked up to many machines. It was a horrible few days. I had little rest, couldn't eat and continued to be in pain.
They desperately wanted to scope my digestive track to see the extent of the damage, but being pregnant meant using heavy sedation was off limits. I consented to trying the procedure with minimal sedation in hopes they could get even a small picture of what needed fixing. Funny quirk that runs in my family is that I don't respond to sedation or freezing very well. It takes multiple needles at the dentist to do even one filling and heavy amounts of knock out gas to get me even the slightest bit sleepy. So this time, the doctors planned to shove a long plastic tube down my throat into an injured esophagus while being awake.
My mother got as close as she could to me while the nurses and doctors set up. (Adrian had to leave the unit temporarily and he wasn't allowed back in until the procedure was over). I wanted her right near me to try to talk me through it, but the lead doctor pushed her out of the way. The next thing I knew, I was gagging and crying followed by muffled screams as they shoved and shoved. I heard the doctor shout "Hold her!" so the nurses pinned me down. I couldn't breathe or think or shout. I felt like I was suffocating and then everything went black.
I was only out of it for a few seconds but when I opened my eyes, everyone had backed off. My mom was there, drying my tears and reassuring me that it was over. Her eyes red and puffy as well, comforting me with shaky hands. She later told me, it was the worst thing she had ever experienced as a mother, as she watch them seemingly torture me. I glanced at the clock and couldn't believe that almost an hour had passed, and after all that agony, it had all been for nothing.
Over the next several days, my terrible pain was monitored and I was given medicine to heal my digestive track. I also had bouts of contractions and fevers that were being watched as well. After I was deemed stable enough, I got to go home on bedrest, awaiting the next physical disaster I was unknowingly going to face. I wish I could say this was the climax of troubles during my pregnancy but it was not. This story also doesn't have a warm and fuzzy take away message. The truth is, this event shook me to my core. It was terrifying, painful and traumatizing. I was so grateful to have people visit me and pray with/for me. I knew I was surrounded by loved ones and I knew God hadn't left me, but still I felt so alone.
Sometimes we can look back on difficult circumstances with grace-given hindsight and see what amazing things God was doing in all the madness. This was not one of those times. I look back and see pain. I'm learning that we will not always see God's hand in things on this side of eternity, even though I know He is tirelessly working beyond our limited viewpoint.
God says to praise Him in the good and the bad. I didn't do that then, but I choose to do it now. I choose to cling to the Truth that says "He will never leave us nor forsake us."(Hebrews 13:5) I know Jesus stood beside me every second of that terrible week and I know He did not stand there idle. So I praise Him. I also surrender the pain, trauma and even my resentment up to God, confessing I should have done that ages ago. Instead of pushing this awful event from my memory, I choose to make it a week NOT to forget by writing about it here. Not every story is wrapped up nicely in a bow, at least not from our perspective, but I need the reminder that God never promised "pretty" or "easy" or even to give answers. He promises us that His plan is best, and to trust Him, regardless of circumstances or outcome.
What's a story on your heart that's left you with scars and unanswered questions? What's your dark cloud right now? Sickness? Divorce? Death of a loved one? Battling addictions? There's a saying: "God is good, All the time. And All the time, God is Good." An easy mantra when things are going well, and (though slightly less easy) quotable when you can see the silver lining beyond the black cloud. However, it's when we can't see anything at all, that makes this quote so vital to our lives. It may not be a quoted Bible verse, but it definitely comes from Truth, and something to cling to, especially when there seems to be no evidence to support it.
I don't have all the answers to my questions and my life circumstances are certainly not all wrapped up in platitudes and inspirational testimonies. This is just one piece of the jigsaw puzzle, that is my life and it's a dark one. I'm just thankful one day God will show me the whole story, and I trust that although I don't understand everything now, one day, by His grace, I will.
Last Tuesday (June 18th 2019) I entered Grand River Hospital Kitchener for surgery.
I am no stranger to operations, having my first at one month old. Over the years I've had several eye surgeries, my appendix taken out, dental surgery, two c-sections and other procedures for my chronic illnesses. I know the protocol very well and know what to expect each time I enter an operating room. However, in my current health state (which is quite poor) this surgery posed a number of possible complications. I needed an exploratory laparoscopy to get rid of adhesions and endometrial tissues throughout my abdomen as well as an ablation. Two procedures in one operation that was hopeful to be short and simple.
Over the years I've learned to become my own healthcare advocate. My medical history is extremely long, detailed and complicated. Some wouldn't believe all the procedures and treatments I've done or been on, and with having to see several different doctors in different specialties, I've become quite proficient in the medical world. I know my body and I know what works and what doesn't.
For this surgery we did everything we could to prepare for anything out of the ordinary, but you can only prepare so much. I met with as many of the doctors, nurses and staff I could that would be taking care of me, to fill them in on my history and together come up with some precautions to prevent complications that have happened in the past.
My body does not create enough antibodies and therefore I have a poor immune system (Common Variable Immune Deficiency) making infections likely and healing slow. We also factored in my need for steroids (Addison's disease) and my lupus, that has been causing issues for months. With all these factors, they planned to give me extra meds, keep me overnight (although it was day surgery) and watch me carefully.
It's been 11 days since my operation at 11:30am and what a crazy week its been! I went into surgery nervous but grounded in my faith knowing God was in control. Thankfully the whole procedure went well (I assumed, because the same surgeon never came to talk to me afterwards or give me a review of what happened). I woke up in the PACU with a very sore throat and throbbing pain in my stomach. Once I returned to day surgery, I could start to talk again and sucked on a popsicle while the poor nurses on that floor had to figure out the logistical mess the PACU nurses created. Papers were missing, instructions got lost, miscommunications occurred and everyone was frustrated. They eventually hunted down the Internal Medicine doctor whom I saw in preparation, who then had to rewrite the orders. Eventually things got sorted and we thanked God for His control in all of it (and for getting us out of there!)
On the unit, I was admitted to a ward room and tried to rest. I was very sore and grateful to have a wonderful nurse who went above and beyond (thank you Anna!) to make me comfortable. We had some trouble post op with some unexpected bleeding and bladder issues. I ended up staying a couple days, but went home feeling confident that recovery would go smoothly from there on. Unfortunately by the weekend, my pain started to increase and I started swelling and I definitely was not feeling better.
Monday morning, we were at McMaster Hospital for my regular IVIG treatment. While there, my routine blood work showed infection and the nurses didn't like the look of me so they referred me to the on-call doctor. After a CT scan, we learned I had an infected uterus, a small hernia, fluid around my heart and a small amount in my lungs. I was admitted quickly to the women's Critical Care Unit and started on a treatment of antibiotics and steroids. I was in a huge room all by myself with the most wonderful team to look after me. While getting settled, one nurse came in and said how sorry she was that this happened and gave me a kiss and a hug while I cried a few tears. She said she would be praying for me and in that moment I felt God reminding me that He was still in control. I hated that I had to be there. To get yet another infection, to be in another city away from my family and having to be poked and prodded every few hours. I was angry that all our "preparations" didn't seem to work and tired of having to give our loved ones more bad news. It felt like it was just another wave of nasty circumstances that keep happening to us. We were overwhelmed and burnt out.
I don't know that nurse's name who held me and prayed for me but I know she was a gift from God. She made me remember that He has been with us every step of the way. I made it off the operating table with a successful surgery, and made it through the frustrating logistics of hospital paperwork. My pain and discomfort was controlled with medication and the earlier blood and bladder issues resolved themselves. I was blessed to have a good room and a bed beside the window so I could see the sun. As I went home, God provided us with family and friends who gave us food, support and love. We were showered with prayers and although friends don't always understand the depth of what I'm going through, they are there to support me and Adrian no matter what.
I am home now recovering. Still taking the needed medication and still requiring further testing, but I am home and I am improving. Looking back on these past days, I can choose to focus on all the struggles and pain and frustrations or I can see God's glory and grace throughout every circumstance. I truly felt the power of the prayers our loved ones were praying on our behalf and I may not see what goes on in the spiritual realm but I know in my spirit, God was protecting me from things I can't even imagine.
We don't know what the future holds for my health and wellness but we do know that we are covered in the protective love and grace of our Heavenly Father who is ever present. We made it through another surgery and have made it out the other side, not untouched but with a deeper trust and wonder of the incredible God we serve.
I look in the mirror and see a strange woman, that slightly resembles the Erin I have always known staring back at me. So many things have changed.
In the last 6 months, being on high steroids I began to notice major hair loss. I've never had very thick hair, but this was way more than just post baby hair loss. Clumps would lie in the bathtub after a shower, my hairbrush was always full and attempting to "do" my hair was getting trickier and trickier. I lost all my bangs in the front, and while keeping my length at the back, all that was left up top was random wispy hair that wouldn't straighten properly or be styled in any way. One day after attempting to look nice for some occasion I sat down on the toilet lid and cried. I hadn't noticed how drastically my hair had changed and it seemed to hit me all at once and I was devastated.
I called my mom and poured out all my feelings and hurt. I knew it was just hair, but it was my hair and it was part of who I am. After that, I didn't want to leave the house. All I could do was pull my hair into a bun and wear a thick headband to cover the front. I decided then that I was going to look into hair pieces and see what my options were. I soon discovered that hair pieces (wigs, toppers, implants etc.) have come a long way and can be quite nice and look very natural, although admittedly quite pricy. My incredibly generous parents volunteered to buy me a wig. A beautiful thick shoulder length blonde wig, styled with long side bangs. I immediately felt like a new woman. I walked out of that shop with a new spring in my step and a smile on my face.
Looking back, I feel embarrassed for being so concerned with something as trivial as hair, but I don't regret wearing my wigs or trying to look the best I could with what I had. I realized that God was trying to teach me something bigger than vanity. I had to learn I was placing so much of my identity in my looks and in what I saw in the mirror, instead of the truth that my identity alone, resides in Him and who He says I am.
With medications that give you a ravenous appetite and additional weight gain, I've put on over 35 pounds. My face is moon-shaped and stomach extremely swollen making me appear 6 months pregnant, and all trace of my somewhat lean and toned body has been replaced by saggy (post surgical) skin, stretch marks, and major fluid retention.
I have to admit that this season is hard and humbling. I never realized how much of my identity was in my appearance. From my thin patchy hair, to my swollen toes, I see a completely different person than a year ago, but God is teaching me that I need to release that to Him and try to let His peace surround it. One day I pray to be off some of these medications and perhaps the side effects will dissipate. However I'm daily asking Jesus to help me see myself as He does. I pray He aligns my heart so that I wouldn't grieve a seemingly "ugly" body, but instead grieve an ugly or unattractive heart. This is what I want to focus on; seeking Jesus more and more to sanctify me and mold me into the woman He wants me to be. To shift my focus from frowning in the mirror to searching my heart for ugliness that only He can transform, and allowing Him to do it. God knows my heart just as he knows how many hairs I have left on my head. He sees what needs to be changed, shaped and uprooted, but He also sees my hurts, questions and grief and He loves me through it all. I am beautiful because I am His. I am made in His image and while the blessing of society's definition of beauty may not be mine, the blessing of salvation and relationship with Jesus is all I could ever need.
Every day I have to pause and stop the negative thoughts I have about my body. I need to remember the truth about who I am and how blessed I am to have the healthcare I require and a body that can still do so much, though limited. I need to remember that my heart and love for Jesus is what I truly want to see when I look in the mirror.
Over the past several months, my body has been fighting. Fighting off nasty infections, fighting against itself from rampant autoimmune diseases, fighting for energy and stamina, fighting for any sense of health and normalcy. This has been our life, fighting and praying.
Fall of 2018, I became very unwell. I was having stomach issues, bleeding, pain, pure exhaustion. Tests were inconclusive, medications didn't seem to help and I was shrivelling up into this ghostly, thin shadow of a human. My husband Adrian took a leave of absence from work to take care of me and the boys, but I wasn't getting better. While waiting to see a couple different specialists, I stayed in bed most of the time and just survived from one day to the next. I was malnourished, dehydrated, full of infection, in adrenal crisis, and fighting a major flare of my lupus. Finally, at the hospital, we started to get some answers and solutions. My stomach had H Pylori infection that required extensive antibiotics, and after a colonoscopy and endoscopy, they diagnosed me with a severe digestive motility disorder. My whole digestive track was infected and shut down. I couldn't process food and I was in a lot of pain. Once they got my "plumbing" moving again, and started on proper medications, I started to improve. However, they also noticed my body was completely deficient of cortisol
"Cortisol is a steroid hormone that regulates a wide range of processes throughout the body, including metabolism and the immune response. It also has a very important role in helping the body respond to stress" (http://www.yourhormones.info)
It's a serious thing to be in adrenal crisis, where your body is not producing enough cortisol. The condition associated with this, is called Addison's Disease. It's rare and needs to be monitored. It can require being on steroids the rest of your life.
Steroids are a go-to medication for many autoimmune conditions and can greatly reduce immflamation in the body, but they come at a price with many side-effects. Since December (now being June), I have been on a high dose of prednisone (type of steroid) to counteract both my body's immflamation with Lupus and giving my body cortisol to keep the Addison's in check. For 6 months, we have been on a roller coaster of health highs and lows. It became clear in January that I was not going to get better overnight, and what my quality of life was going to look like longterm was a mystery. Prayerfully, Adrian chose to relinquish his contract at work to be home full time for as long as Ontario Disability would allow. We are still in that place today.
In 6 months, I've had a severe stomach infection, kidney infections, pericarditis twice, and a whole bunch of "women's issues". My specialist in Hamilton over this time has been working with us to try to stop my body from attacking itself. We've made medication changes, diet changes, lifestyle changes and slowly we feel we are finally coming to a light at the end of the tunnel. I have good days and bad days. Sometimes I wake up with lots of energy and feel ready to conquer the world, but if I'm not careful, the next day I won't be able to get out of bed. I've been learning a lot about contentment and surrendering my body, my time and my abilities up to Jesus. Some days all I can do is lie in bed, but even in that, I can bring Glory to God. It's been something the Holy Spirit has desperately trying to teach me through all of this, and I still have a lot to learn, but these months of trials have been so true to what James talks about in the Bible. Trials do refine us. They grow our faith and pull out unhealthy roots, to one day produce good fruit in its place. The joy and peace God has lavished over us in this time has been indescribable. Yes there are days of tears, sadness and frustration. We grieve, wrestle and wonder why, but ultimately we know we're right where we are supposed to be, in the palm of His hand.
Our church community, friends, and family have banded around us both physically and in prayer. Most of them don't understand the depth of what we've gone through and are still going through. They don't know how many hospital trips we make on a regular basis, or the dozens of medications I rely on. They don't see the pain and exhaustion or that some days we are barely holding it together. Dozens of appointments, infusions every 3 weeks, so many IV pokes that my veins are becoming unusable, ambulance calls, fainting spells, random bleeding; these are just glimpses of our reality, all while raising two little boys, and remaining in leadership in our church.
Sometimes it feels like my whole life is a battle. A fight to get up and face the day not knowing what my body will do. A fight knowing when to push myself or bow out of a situation. A fight against isolation and loneliness, and a fight for my mind and heart to focus on Jesus and not my circumstances. It's hard, and more often than not, I revert to my self-centredness and ask "why me"! I forget that everyone single person has their own burdens to carry and heartache to deal with. I forget that my pain is temporary on this earth and one day God will give me a glorified body free of sickness. I forget that so many souls face much harder struggles than I do and still get up and go to bed with God's praise on their lips. I forget that it's not all about me.
So this is where I am. Taking things day by day. Trying to give each moment to Jesus and practice His presence, be in His Word and let Him guide my steps. I don't know what's going to happen with my body. Will we get the immflamuation under control? Will I get to a place of "remission" or relief from the symptoms? Will I be able to get off some medications that are very hard on the body? Will I ever be able to confidently and safely take care of my children on my own again? I really don't know, but I've learned stressing about it, and trying to push my own agenda just makes things worse. God tells me (and all of us) to surrender; lift up the good and the bad and trust in His sovereign plan. Where is this journey going to take me and my family? I really don't know, but I do know that God is already there, calling me into His arms.
When you get the stomach flu, you throw up, take gravol, nibble on saltines and remind yourself it will be over in a day or so. Or when you break a leg, you hobble around with crutches, waiting until the cast comes off. With health problems, there is usually a day when it' "gets better", but what do you do, if it doesn't?
This is a question that has been rolling around in my mind for awhile. I've realized that even with the multiple diagnosisses of chronic illness, I've been viewing my health problems as recurrent events. I have a flare, or something happens and it takes time to "get better" then I move on, and the cycle repeats. In one way I thought it was a healthy perspective, because I wasn't considering myself as "ill", just going through sick seasons. What I've learned however, is with that mindset, every time I get "sick" I get discouraged all over again and just try to survive until the next season of "wellness".
Am I sick? Am I well? Anyone with chronic illness will tell you, you're never fully "better". Your body isn't likely going to be symptom free. We have good days and bad days. Sometimes the good days last awhile and sometimes they seem few and far between. It's a cycle. A draining and frustrating circle. A whirlwind of doctor's appointments, medication refills, and balancing what you can and cannot do.
My cycles are severe. My lupus gives me chronic pain, exhaustion, and inflammation that attacks my internal systems, causing organ damage, kidney stones and more. CVID (Common Variable Immune Deficiency) means I don't have a working immune system. I get an IVIG transfusion every 3 weeks, but even with the antibodies from donated blood, I still get sick a lot. Hemiplegic Migraine Condition gives you debilitating migraines that cause stroke like symptoms. They can be as mild as some tingling in your arm or as severe as paralysis and seizures. Recently, I was also diagnosed with Addison's Disease, meaning my adrenal glands don't produce enough steroid hormones, causing stomach problems, hair loss, weakness, mood disorders and more. These are also on top of eye issues, which require ongoing care. With all these illnesses interacting together, things can get very complicated.
Since my second son was born in May 2017, my health has been in a severe cycle of crisis. I had trouble controlling my health before my boys were born, but pregnancies are very hard on a body and recovering from having two babies 14 months apart made things much worse. I can't count how many times I've been in the hospital in just two years. I've had terrible infections, haemorrhages, crippling anxiety and depression, kidney stones, severe abdominal pain, paralyzing migraines, countless tests and referrals. I've had to be held down screaming by nurses for them to perform scopes, as my body doesn't respond to sedation. I've had more IV's, needle pricks, and pills pushed into me than one could ever count. One hospitalization, they ran out of the usual places to take my blood, so they used my foot. I've been in the ICU, on bedrest, and told a few times I may not survive.
I'm not telling to get sympathy or pity. It's also not about me whining or playing the victim. This is my reality. Every morning I wake up, and these struggles are what I face. I know others wake up to major health issues every day too, and many much much worse than mine. That is their reality too. I take over 40 pills per day and see different doctors multiple times a month. I way my pros and cons with everything, to decide if my body can physically handle what I'm considering. I never know if something will trigger a crisis or bring a new issue to the table.
To summarize, I have a broken body.
I also have two little boys (almost 3 and 2), an incredible husband, loving and supportive family, church ministry and purpose. I have true joy in my life, freedom and salvation through Jesus Christ. I have so much to be grateful for. I get to be a wife, a mother, a daughter, a friend. I get to be an ambassador for Jesus, sharing His love to others. I am provided for. I have healthcare that is free and systems in place to give me an income. My life is full and my needs are met.
Yes, there are things I wish I could do, and sometimes my health feels like a cage, keeping me away from good things in life. But I'm learning that I can see these trials as limitations or opportunities. It's hard on me that my boys have to see their mother in bed instead of caring for them sometimes, but I know it'll teach them compassion and the need to rely on God as their strength. I could wish to be out serving overseas with other missionaries who are passionate about spreading the Gospel, or I could accept and embrace that we need the Gospel to be shared with people right around us, including our nurses, doctors and pharmacists. I struggle sitting on the sidelines when I could be volunteering at events or taking on more responsibilities, but I'm learning that I can be an encouragement and voice of truth to others while sitting on my living room couch.
Almost daily I have to ask myself, do I give in to self pity and hopelessness for what I don't have or do I embrace all the incredible things I do have? I wish I could tell you I always have the right attitude, but it isn't true. There are some days filled with many tears and times of grieving for what I've lost or wont ever have. When those tears fall I'm so thankful for God's unending grace that covers us. He knows my heart and my pain. He knows my desires and capabilities. He knows the path He's laid before me, and I need to rest in that truth, because I know His path has the utmost best in store for me, even if that means heartache on this earth.
My body is weak and sick, but Jesus makes my spirit strong. I'm writing this post in my pjs, on my bed, covered in blankets because I don't have the strength to do anything else today. Today is not a "better" day, but I've decided to not swing from good to bad anymore, because no matter what my body is able to do, through Jesus I can accomplish exactly what He wants me to accomplish. For he has given me everything I need to accomplish what He desires in every season, including day to day life. So instead of feeling good and dreading the next crisis, or being in crisis and longing for the next wellness, I'm going to see every day as an opportunity to obey God, to follow His leading and dwell in His love. Facing the fact that I may never "get better", I choose to be okay with that. Because when we trust that God is good and in control, nothing can steal our joy and purpose, not even a broken body.
To quote the Matrix "If real is what you can feel, smell, taste and see, then 'real' is simply electrical signals interpreted by your brain."
I love to be the centre of attention. I love birthdays and praise and admiration. Being affirmed and words of encouragement are definitely a love language for me.
Children need attention. They spell love, T-I-M-E. They need their parent's love, support, understanding, guidance, and encouragement. When they don't get this kind of positive attention, all that's left is negative attention, and I jumped on that bandwagon pretty early.
At birth, I was born with eye problems that required a lot of doctor's appointments, surgeries and comfort. As I grew older and puberty began to hit, other things came up. Joint pain, strange rashes, recurrent infections, exhaustion, migraines, memory issues and more. It didn't take long in my childhood for me to clue in that when I was in a health crisis, I got attention.
My parents loved me and my brother. They worked hard to give us a comfortable place to live and did their best to give us the time and attention we needed, but life doesn't always happen the way we hope. Working as a full time RN, my mom wasn't around very much and my dad worked a lot too. When they changed jobs and became involved in full time camp ministry, things really changed. It was a 24/7 lifestyle. Our house was onsite and for 5 years, I saw more of the staff than my parents. I'm not laying blame. There has since been so much growth, understanding and reconciliation on both our parts and forgiveness is so powerful.
During that time, I felt more alone than ever. Don't get me wrong, there were great times too and fun memories of camp life that I'll always treasure. But I wasn't parented very much. I grew and tried to figure things out for myself, and I got a lot of things wrong. When my new health problems began to arise, it was like I was finally being noticed again. My parents swarmed around me like flies as we tried to figure out what was going on. From the paediatrician, to the allergist, to the immunologist to the infectious disease specialist. The list went on. No-one really had an answer. Blood tests were positive for some things and negative for others. Symptoms would come and fade and come again. I started to wrestle with this concept of "sickness gets me attention, but this is not fun and I want it to stop." I battled that a lot.
As a preteen and into my teen years I was a drama queen. I completely admit it. I would ham up a situation, or exaggerate a story quite frequently. I'm not proud of my past but am so grateful for God's grace. I poured my heart out to Him long ago about my lies (because they were in fact lies) and my manipulative behaviour. Jesus' blood has washed me clean and I'm so thankful I can lay it all at His feet.
Sometimes it was hard for me and people around me, because they knew I liked to dramatize things but I also had some very real and scary physical symptoms happening. So what was real? We battled for years looking for answers and each doctor seemed to have their own opinion and treatment. Looking back, I know there were some friends and even family who thought I was just hamming it up again, and I couldn't blame them. I had blown the trust on that but I knew these things were real. I have pictures of me at around age 15 with a rash covering my whole body. My eyes were swollen shut, my joints so inflamed that it was hard to hold a pencil. And this went on for months, then years. After high school, things really started to slide downhill. I was sick ALL the time. I would catch a cold and it would turn into pneumonia. I was in the hospital getting IV antibiotics regularly for infection after infection. I couldn't keep food down and my joint pain was so bad, I barely moved. I was scared.
My parents and I finally had enough of fighting for answers and decided to act on one doctor's advice. At Sick Kid's immunology department, one doctor suggested I might have Lyme Disease. I had most of the symptoms and I had lived at a camp, so the pieces fit. Trouble is, Canada at the time didn't take treatment for Lyme very seriously. The doctor gave me 30 days of oral antibiotics and said that should cure it. Well it didn't. We decided to do our own research and remembered that we knew a girl who had Lyme. She required extensive treatment that the US was using on Lyme patients and it seemed to work. So we contacted a specialist in Buffalo and took a leap of faith. For 3 months, we drove there daily to have my blood removed and oxygenated, IV antibiotics, physical therapy and be in a hyperbaric chamber. My diet and lifestyle was totally changed and you know what? I started to get better.
I am so incredibly thankful for Canada's free healthcare system. It's not perfect but I'm so grateful I can be admitted to hospital and know I won't come home to a $15,000 medical bill. This treatment I was getting however, was even more expensive than that. My parents did all they could to pay for this treatment as long as possible but we finally had to stop because it was just too much.
I remember being with a 14 year old girl at the clinic in Buffalo. Her family lived in Ontario as well, and the parents took out a second mortgage on their home to give their daughter this treatment. She was almost completely paralyzed from Lyme Disease when she first came to the clinic and it was a privilege to see her begin to walk again as treatment went on.
Being in Buffalo and doing that treatment really seemed to do the trick. I had life to me again, energy and eagerness to actually move forward, and for about a year that's what I did. I wish I could say that was the end of my health problem journey, but it wasn't. Familiar symptoms began creeping back up, and new ones started. We felt like we were right back where we started.
Looking back, I know that wasn't true. We went through a tremendous amount during those years but we learned a lot. My parents and I grew together during that time. We discovered a lot of the brokenness in our relationship and were able to repent and seek forgiveness from each other. We started to heal from old wounds that happened before and during the camp years. I was able to confess my brokenness and sins I committed as a teen and young adult, and I was able to mature from a drama queen to something more. It was the during this time that Jesus began to pull on my heart. Slowly stripping away the legalism and false religion I was stuck in.
It was the first of many lessons in knowing my true identity. Not as a lonely little girl, a dramatic teenager, a victim, and not as a sick person. God began to show me, I am His and He defined me.
I'm still learning that lesson today. I'm constantly being reminded of who I am in Christ and I need those reminders daily. Those strongholds started in childhood aren't easy to break but God is faithful and full of grace.
A couple years later I was diagnosed with Lupus, Common Variable Immune Deficiency, and Hemiplegic Migraine Condition. Three big diagnosises. I finally got the label we had searched for to put with all the symptoms. After all the years we finally had our answers, but you know what? It didn't matter as much anymore.
For years I NEEDED a diagnosis. A diagnosis would prove I wasn't faking, that it was real. I thought it was the answer. True, I now have the treatment I need and the proper tools to manage my illnesses, and that has been a big blessing, but I didn't need the diagnosis for the reasons I thought I did.
Being honest, 100% honest isn't easy, and trying to be completely in-tune with your body in that way is even trickier for me. So what is real? What's real is that I'm a child of God who sinned by using illness to get the attention I craved. What's real is that I'm forgiven. What's real is that my body has limits, big ones that do exist. And what's real is that neither the sin nor the illness defines me, God does.
That's how old I was when the first medical crisis started. My dad was changing my diaper and noticed my left eye wasn't responding to light or movement. Unsure of what to do, the Paediatrician set us up with an Ophthalmologist, and I was quickly diagnosed with a Cataract. At one month old, I had my first operation. They removed the lens in my eye and began putting a contact lens on top of my eye. Several months later, the other cataract developed and they repeated the surgery on my right eye. Two more eye surgeries followed in the next couple years to remove scar tissue and tighten the muscles. I've worn contact lenses on my eyes ever since.
Looking back, my parents joke about how the neighbours must have thought they were torturing me every morning and night as one of them held me down, screaming while the other placed or removed the lenses. In those days contact lenses were relatively new and quite finicky. They were a rounded, hard, plastic-like lens that if not placed perfectly on the iris, were quite painful. They were removed each night by a tiny little plunger that suctioned them off of my eyes. For many years, to not mix them up, they were given two different colours. Most of my pictures of me 10 years and under, are of me with one blue eye and one green eye.
Next came the eye patch. After the cataracts were removed, poor vision remained, and my left eye was substantially stronger than my right. To improve my vision I wore an eyepatch over my left eye to strengthen the right. How I despised that eye patch! It was itchy, hot and pulled my skin, not to mention made me a target for onlookers with questions and jokes. Once standing in a line at the bank with my mom, a man behind us looked at my mom and said "So did you punch her eye out?" Kids were more curious than cruel. I would get asked if an eyeball existed behind that patch on a regular basis but I didn't mind. Sometimes I would even come up with silly responses to freak them out. "Oh no, not behind the patch, but I do have it here in my pocket!" It was just part of my daily life and we learned to deal with it all. My dad had a hard time getting my lenses in and out (he was the one who'd pin me down while mom did the lens job), so on nights when mom was working, he would pack me and my brother up and drive to her work so she could take them out there. It made things like sleepovers and being watched by babysitters tricky, but we made it work. Eventually technology improved and lenses became more like the soft pliable material we use today. I was then able to put them in and out myself.
Along with the cataracts came an eye condition called glaucoma, which means the eye has a high build up of pressure from the fluid. Every 6 months or so, we would make the trip to Sick Kid's Hospital to see Dr. Levin. He performed a few of my surgeries and remained my doctor for several years. I would take eye drops to keep the pressures down and he monitored them closely. My other doctor who maintained my contact lenses was Dr. Brent, a kind and caring man who actually was part of the team to first use them on children. He was passionate in his field, extremely intelligent, and so gentle. I never left his office without a handful of smarties. I continued in his care until his retirement in 2016.
Other specialists became involved and I was bumped around to handle issues that came up over the years. Further surgeries were needed to tighten my eye muscles, correct double vision and combat my glaucoma. I was even once involved in a clinical study to advance research on children born with cataracts. My parents did genetic testing when I was a baby but no explanation was found as to why my eyes are the way they are.
Did God make me this way on purpose? Were my eyes just defective? Is it just a result of living in a broken world? I don't have the answers either, but I do know some things.
I know if I had been born 50 years before my time, I would have grown up blind. I know God doesn't make mistakes. I know that I appreciate my eyesight everyday. There are many children who were and are born like me and aren't able to get the care I received, and even some that did, are still considered blind. I know that God works all things for good and that He used the struggles we went through to tell a story of redemption and provision. I also know that our bodies are a gift, a beautiful and complex gift and all of us are fearfully and wonderfully made.
I don't know what the future holds for my vision. I still see doctors who monitor my sight and pressures and I know more surgeries will probably happen as some point. Will I keep my vision for the rest of my life? I really don't know. Some doctors have told me it will deteriorate with time, others say my glaucoma could suddenly knock it out all at once. What I do know, is that God has given me the ability to surrender it to Him. I pray that I will see our children get married, our grandchildren be born, and my husband's stunning eyes as a 90 year old man, but I trust that even if those things don't happen, I will be okay. My sight was a miracle as a 4 week old infant and it'll be a miracle for the rest of my life.
Follower of Jesus, on a journey to glorify God and to advance His Kingdom while battling Chronic Illness in the everyday life. Diagnoses include Lupus, CVID, POTS, IBS, Hemiplegic Migraines and other Autoimmune conditions.