My previous blog post expressed one side of my coin. But there is another… one that surprises me! Two days after I wrote that post, I tried out for a small part in a local play. I forced my son and begged my hubby to try out too. My daughter was already gunning for a specific part ( that she received) and my other son did not have availability in his calendar… but we tried out and got our respective parts.
I haven’t been on the stage in twenty years due to the sacrificial years of childbearing combined with chronic illness issues. When I finally did feel strong enough to feel the pull - I thought I was too old and rusty. It’s funny how life works out. I’m reclaiming my voice ravaged by Lymes/ Anemia/ and Fibro with voice lessons. I’m saying yes to things that would have terrified me before - and enjoying them!
Half a year ago, my daughter provided me with invaluable friends that feel like they have always been a part of my fabric of existence. All of them are in the arts in some form. All of them are a range of a decade (to two) younger than me. Yet, I consider them my friends. I believe most of them consider me a friend too. A couple in particular have become exceptionally close. These friends have brought out attributes of myself that were squelched or needed to take a backseat in other seasons. (It’s also a matter of right time/ right place.)
I don’t regret my previous seasons. They’ve shaped me into the person I am today. I don’t regret the many times I stepped out of expectations for me ( to work/ to serve/ to put my children in school/ to go to church/ to not go to church/ to have my kids in official things or normal activities / to conform/ to be in all the things/ to perfect all the roles …) in all my seasons I wanted Spirit to be first. I trusted Spirit to guide us in the kingdom upside down when it was tough. I wanted to live as a Being not just a doer and wished my children the same. There were many times our decisions looked impossible to others ( generally they weren’t and just required others sorts of sacrifices unrecognized) or like failure, but they built the home and the beautiful family and community we have today.
This is a new season. I’m still the same person with similar issues in any given season of health… but I know more strategies, work arounds and supports. Yet, I’m being stretched in a fun way. I’m being taken gently out of varied comfort zones in ways that suit me. (In areas of singing, dancing, socializing, and all that comes with the beautiful community of that.) I know I wouldn’t have tried out for Newsies if I didn’t have Darta, Autumn, Eden and Natasha in my life. Each one played a different part. Thank God. Because I have been taught a new lesson… One CAN suddenly thrive alongside certain levels of surviving. The key component? Faith and community. Having a previous season where I learned how to say a healthy no so that now I’m more familiar with what I can say YES! To.
I prayed that I would learn how to have fun for years. It felt like a frivolous prayer… and while I did have fun with my husband, children and friends… I didn’t have any outlets for my particular interests besides books. My Elphaba was honoured while my Galinda sat mostly silent. That was ok, but sometimes I wondered if I was so caught up in disability and chronic illness rhetoric, that I forgot sometimes about the other side of the coin. There was a time a few years ago when I realized I sounded more like a victim, than a person with struggles made in the image of God. My issues mattered but God was before them. My interests matter too but ONLY WITH God beside me.
I’ve had a few breakdowns lately on a level that my husband hadn’t witnessed since my miscarriage days… just to show that everything is not perfect- BUT I’ve also had so many fun and happy moments I wouldn’t trade! I prayed for wisdom in diet and health and slowly it’s been making a change. Not only have I met younger friends but also wise aged friends like Sandy. Sandy is almost a couple decades older than me but feels my age. She comes to pray with me ( something I generally dislike to do with others) and for the first time in my life it feels restoring and good! Age truly is relative and not significant when it comes to Kindred Spirits. Or my past friends who’ve mixed with my new friends for varied book studies that sustain and go deep into the wonder and grit of life. Or the constant friends I’ve had for years, who see these changes in me, and instead of begrudging me or asking if I’m in an odd happy midlife crises they state things like, “ it’s about time ! I always knew you should be in a play!” Or “You’ve always had a beautiful voice and now I get to hear it more.” Or “ this looks like so much fun! This suits you! I’m so glad you are having a blast.”
I sit back and all I can think is - Beauty, Wonder, Community and Imagination can save lives. They can take us up out of ourselves and out of the alternative of nihilism, pessimism and victimhood. Is there still great suffering ? Yes. Does grief need its place? Absolutely! Are there seasons? Always. But if a dry season lasts decades or the same complaints continue through ones entire life- the question needs to be asked… Can we instead look for whatever is true, noble, good, lovely, admirable and pure? Are there still flecks of beauty to be had? Can there be choices of perspective and daring risks that suit us- to step into that beauty?
Some days I’m in pain and out of breath and my life still matches my last post. But now, I often choose to lean into my community, ask for opportunities and seek out the good and beautiful I’m equipped to partake in. It comes with discipline, harmony, compassion and a calmer approach to life’s dramas. It also is a blessing and its own sort of miracle that I attribute to my Creator who made all things good and truly does love joy.
Wishing you glimpses of joy and beauty this season in your life! May you say YES to the goodness enveloping you with gratitude and find support during inevitable grief.
“What miracles, what wonders, what greatness belongs to you… your mercy grows through the ages, your faithfulness is firm, rising up to the skies…you’ve healed me inside and out from every disease… you’ve crowned my life with mercy… you’ve supercharged my life so that I soar again like an eagle in the sky. As my whole heart explodes with praise… how you’re marvellous miracles exceed expectations… as I make music…my heart oh God is quiet and confident all because of you. Awake oh my soul… with songs of light. Wherever i go i will thank you. Your love stretches to the skies…” ( Broken Part 2 Michael W Smith) https://www.youtube.com/watch?v=3kA-3RvDDN4
Song choice: The Most Beautiful Things- Tennille Towns
How do you deal with limitations? The kind that are not surmountable or conquerable? When solutions fail and conventional methods have devastating effects? How do you feel about the phrase, “I want to thrive not just survive”? How does a person with limitations of any kind learn to live a life of meaning and inspiration? Can limitations be a blessing in disguise? Are they somehow redeemable or do they just suck? Can it be a both / and situation?
I’m limited in many ways. However, there is one limitation that affects other limitations. It is a ‘trickle effect limitation’ that stems into other categories like weight gain, depression, self esteem, anxiety, energy and a general knowing that I can’t do the things I generally want to do as a “go getter.” I’ve written about this before. Multiple times. I’ve come to terms and peace with it - and then cycled around to grappling and trying to control it. I have often viewed my consistent low ferritin as the proverbial thorn in my side or Achilles heel of autoimmune disease symptoms. I have other long term diagnosis to deal with, but it’s this one, that gets me down the most. Because I’m at a catch 22. I’m allergic to the solutions and had a life threatening experience the last time I went under anesthesia. So I am quite literally stuck. Which means, when there is not much a body can do about an existing condition, there has to be some sort of understanding to ease the burden, a process of both grieving and acceptance (over and over again) and a general support system.
I have found personal Forums and Reddit to be that place for me. Most doctors don’t get how it feels. It takes a fellow sufferer to understand. Thus, I’m including some pictures of Reddit forums below this post but I’ll summarize them. To put my situation into perspective- currently my Ferritin is at a 1, and my hemoglobin at an 8.3 ( in Canada 83.) It was slightly higher before, but my regular cycles completely wipe me out each month. I can usually guess when I’m up or down a point or two from my latest bloodwork. There are times each month when I drop off the face of the earth and stay around my bed.I can’t even have people over to watch shows during this phase.(Conventional medicine is out of the question for my body - believe me- I have tried all the solutions I can, as I have been severely anemic since the age of thirteen. I have also suffered some extreme trauma in medical situations I’m still not over.)
On Reddit, there are many forums for my symptoms but one of my favourite feeds was titled, “How many of us are actually bedridden?” Another was, “Do you constantly feel like you’re slowly dying?” The general consensus is that all these sufferers feel “lazy” and like even folding laundry is exhausting. That’s relatable. For myself, my heart goes through the roof when I pick up my cat or climb the stairs. My children usually bring the cat to me. To an outsider, it looks like my family waits on me a lot - which they do. Our rhythms and normal life look like I’m a total Princess (which admit-tingly, I kind of am sometimes. I’m so lucky they get it mostly.)
(This bookmark cracked me up.)
I’ve dealt with this for so long I know the tricks to look “healthy.” In fact, I’ve been told by doctors there is NO way I have what I have - and then they look at my bloodwork and they are astounded by the facts staring them in the face. The most common comment is, “You look so healthy and energetic! People at your levels are usually bedridden or hospitalized.” One of my more astute Doctors looked at me and stated, “I bet after this appointment you go home and lay down to recover for a couple hours.” Yup. I also wear bronzer to make my previously olive skin tone (which is generally a sickly pallor now) shine through. To me it’s not fake- it’s what it would be if I was healthy. I wear hair extensions when my hair falls out (which it does in cycles.) I cover my nails when they start yellowing or are white due to lack of oxygen. I wear three layers of eye concealer and sparkles to cover or deflect from my dark circles that could often rival Franklin Rosevelt’s. I use silly words to cover the fact that my memory loss is showing up at the moment. There are MANY other tricks I do to look as healthy as I can- I mean, dignity brings a certain level of humaness. I’m also naturally a go getter and high energy person, who can be extremely disciplined at bringing the energy game to life, even while feeling like I’m dying. Some people feel this is fake but it’s not. It’s me trying to live my best life despite my reality when possible. I’m genuinely interested in most people and I want to bring kindness and energy to the conversation. I dislike explaining or being a victim. I also dislike the judgments or the well intentioned solutions (but that is my pride speaking there.)
But the evidence is in the pictures below. I’m not alone. It does sometimes feel like I’m dying slowly. Ordinary tasks sometimes have me gasping for air. Movies with friends are my best way to get quality time while still “fitting in” because I don’t have to exert myself. It looks lazy often: it’s a coping mechanism that enables me to still feel like I have a life. I attract high energy people sometimes, but then I get left behind. I pick and choose events based on timelines where I can feel I can bring it! I pay heavily for some events but that’s the cost I’m willing to pay if I’m there generally. Sometimes I need better plans. Recently we spent a family gathering outside our home for 8 hours and that amount of sitting without laying down for my heart with lack of oxygen had me quite sick afterwards. It’s taken days around my bed or couch to recover. Next time I may have to count the cost and decide on a better plan. My family doesn’t love leaving me alone to go do the things either. They generally understand how painful my limitations are and lucky for me - they like to include me. They try to include me on what I feel I can handle. Sometimes they restrain me from myself. I take on more than what I can chew often because I WANT to be ABLE.
Which brings us full circle to my original questions.
Thriving is a privilege. Surviving is too actually. On many days I’m just grateful I’m alive to this precious life. I know I’d be dead if I’m ever in any situation where I bleed at a normal level ( any accident really.) I read a lot of WW2 stuff and I know I’d be the first to go. My family knows this too. I’m weak but I don’t want to be. I try to be strong for the level of weak I am - if that makes sense? It’s another reason why Elphaba singing to Galinda in Wicked “I’m limited… and look at you- you could do all I couldn’t do…” gets me every time. There are things I have to pass the torch on to someone else who will be inspired by me to do it. I won’t get the credit unless it’s a rare and lovely exception. I won’t be SEEN by anyone other than God. I can even look like the bad guy. I may be the one to start a movement but honestly, I’d rather be the one to finish. That’s not the case most of the time. I long to be active and beautiful. To shed the extra weight I have literally and figuratively, and run in the fields with abandon. I struggle with “normal person envy.” There is so much to unpack regularly.
YET, there is a silver lining. Limitations? In faith, they are what points me to something Greater. I’m consistently running to the One Whom is Stronger and Understands (OK yes, I also run to Google often too which just makes my anxiety worse.) My meaning is not often based on the world’s standards of “get it done!/ be capable!/ live your dreams!/ be all that you can be!” Nor the Christian version of that either (I’m living in that context) which looks often like “be the greatest example!/ be a constant witness!/ change the world!/ bear fruit!/ find your purpose!/ do great things for God!/ you were meant for more than the ordinary!”
The last phrase is true to a degree - we were made for more than the ordinary - because we were made for a Creator who loves and has more for us. Yet, that doesn’t translate to performance. My situation is redeemable when I reframe it in the kingdom upside down. When I see that the sum of my life is contained mostly to my house but also to the people I have IN that home… when I’ve given hours of my time in discussion to someone who is struggling - and then they get to go live life - and I’m mostly stuck to my couch/ bed or deck… I have a perspective choice. I get to ask myself, “What truly matters on my death bed? What matters to the heart of God? How did Jesus spend most of his ministry?” The answers are swift and like a healing balm. I’m not Jesus but I love that model of spending a life talking, taking the time with other outcasts or people who are sick, and don’t feel like they fit or need respite.
I’m not God. My limitations often stop me from being my own type of god. It can be deceptive - being able to do all the things. When the ability is taken away what is left ?
My husband stated to me last night when I was reading Reddit feeds to him, “ Honey, the only reason we often forget you are quite sick or limited is because you forget. You are so good at pretending to be normal, pushing through and not spending all day in your bed even when you are craving to, and disciplining yourself to present a certain way, that we are even fooled. By You! Sometimes you have to be the one to realize your limitations. I know you know but sometimes it doesn’t translate to action. We also want to respect when you want to and CAN do something or choose to take the cost- so you have to set the tone.”
Easier said than done. I don’t want to be the person who is continually pointing out how limited I am. I don’t wish to be a martyr or a victim. I also don’t wish to de value the life I’ve been given or the limits I’m responsible for. For better or worse this IS my reality. God knows what is possible and what I’m responsible for- in that I can rest. Daily I run through my gratitude list. Topping it is my family that has SEEN my struggles and successes and whom still deeply love me. They truly do treat me like a precious human. They help me physically and respect my help mentally, emotionally and spiritually. I’m in an optimal position for what I deal with. Being out in the world isn’t easy but inside my home - I have it good. Which is what I try to share with the people God gives me in my realms. My prayer is often “Send the people you want me to share my haven or words with and help me to lean on God when they are ready and able to go. Show me the people you want me to send books to or share with - as it’s something I can do.”
These limitations can sometimes be absolutely awful. There’s so much I do want to do. I am human after all. There is so much I grapple with. I want to be at a weight I enjoy. I want to be able to do all the things. I want to be able to work out heavily and have the energy to go on long walks because they are beautiful. There are so many things I want to do that I can’t. I dislike explaining it to a lot of people or new friends and I just try to get around it to seem as normal as possible for the most part. Unless they actually read my long blogs - ha! But the longer they spend with me, the more they will know that something is not quite normal. (Ha this doesn’t even count the Autism factor or my other differences!)
One aspect of life I tend to get right often, is the love of the Creator. I know without a doubt how very loved I am by the One Whom Is because of my limitations- which cuts through the bullshit of life and goes straight to the spiritual heart. I know I am that bleeding woman in the Bible. And I know that the hem of His garment is enough. Even if it doesn’t translate to full healing physically - it does translate to full healing spiritually often. I know where my meaning lies, even if I get it mixed up often. It’s easier for me to live in the Kingdom Upside Down because of these limitations and that is something… I suppose. Once again, it’s BOTH/AND.
Do I want to thrive not just survive? Absolutely! Is it my reality? No, although sometimes Grace gives me seasons or moments of thriving. That taste is bittersweet. But that’s ok, because stories of survival can be inspiring. I know that the person who is more disabled than I - bedridden and incoherent - is still incredibly precious to God and life. As long as they are still breathing they are WORTHY to exist. Their survival means something on this plain of existence. That humbles me.
Song choice: This song is a song from the nineties (laughable so with its beats;) but I love the lyrics. I sing them often in my upside down world. Kingdom Upside Down - Morgan Cryer : https://m.youtube.com/watch?v=RNwtwMUMGVM
