Weird Normal & Cancer Envy; Part One of Bear With Me

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Friends, Ed & E called. They were concerned, curious mostly about the intensity and/or emotional topics on my recent posts, and because I’ve been missing in action.

Bear With Me 4I have been quieter in general, but to address some of their concern, I explained that I usually write about my or other’s experiences in the way they felt at the time of the occurrences. It gives the impression they all happened recently, but really they could have happened yesterday or thirty years ago.

I do mix them up because while they make the point that I want, it also protects people who may need shielding.  I also just like to indulge in a little mystery for fun.

Admittedly, the events of late are not all related to that fun; they have been more unusually taxing. So yes, I’ve been more reserved in my activities and have expressed more personal poignancy in my posts.

I manage a rare disease within my daily routine. For the most part everything about me seems pretty normal, except for when this disease bounces my world into chaos.

To explain the beast in 10 words or less – it’s an inflammation-based disease of all kinds of irritation, but mainly it unpredictably interferes with organ function and defies prognosis.  It’s a pick an organ, any organ to screw with when it’s bored or cranky, kind of bastard. I call these visits by it, the ‘big ones’.

Friends may observe it has pounced by my newly inhibited movement, or noticeable weight loss, or I might be hospitalized for months engaged in hand to hand combat with the Grim Reaper. Sometimes he’s content to just gnaw on a limb for a few weeks.

The moments in between these time-outs are the same as most – work, growing kids, growing me, up days, down days, and once in a while even surviving catastrophic days unrelated to my health.

This fall, previously written about on the loss of someone I loved, and the pain of a betrayal, played into that old myth that these sort of events come in threes.

So, in the midst of the hell, number three showed up, in the form of another scary, frustrating flare-up. It would take another post to detail it and I’d rather leave it at saying I acquired a painful syndrome that they say will take a couple of years to unwind. It also triggered a former crisis. Let the good times roll.

Of course, I’m scared. Yes it troubles me, and yes, I’ve cried. Navigating pain is tricky business & each of these events makes me feel just a little bit or a lot bit, lost at times. There is a real aura of alone because I am in some ways, the least of which is that I have never met anyone who has my disease.

Not that I wish for someone else to have it for company.  It can stir up a weird head space though.  I’ve actually envied cancer patients.  They have so much support, myriad services and immediate sympathy.  And ready understanding.

Once I walked out of a private ‘washroom for disabled’ and a woman waved her cane and loudly castigated me, “You should know this room is for the disabled!”

I’d used the privacy to deal with a temporary drainage bag attached into my belly. I only stared at her, feeling indignant embarrassment as I brushed past her. I wish I would have said something to puncture her presumptions and I still can’t believe I didn’t…

That experience was too new for me to think fast enough.  Maybe.  Probably, I was drugged. I’d later considered wearing a scarf to cover my hair – chemo hair-loss style – whenever I was struck by the big ones. I eventually got over that and earned another level of psyche strength; I definitely don’t feel obligated to always explain myself anymore.

Which leads me toward the point of this post. Well, it will somewhere down the line.

Hindsight is 20/20 when measuring growth through adversity, but when awesome reader/friends, Rebekah Ingram & Randall Willis, zinged me with some gorgeous insight, there was an intriguing moment of ‘aha’!

Their views pointed me to observing the growth & changes in me as they are occurring. Maybe we call it 10/10 forevision. This means I’m paying attention to what’s going on in my feelings, body & spirit now, during these trials, rather than surviving and processing later.

Along with mom & dad flying across the country to hug & assist me, I believe applying this new aspect could, in some ways, help me heal a little faster.

It’s another work in progress, but I look forward to seeing what’s being brought to me and through me with this new process. I’ll start in gratitude to these friends for sharing their caring hearts at just the right time.

 

29 thoughts on “Weird Normal & Cancer Envy; Part One of Bear With Me”

  1. Whew, thank you for trusting us and sharing that Robyn. I too have often had a passing thought that the support given cancer patients is right and good but far greater than some other issues that are more personal. In fact if you don’t mind, i’d like to tackle a personal experience that shows clearly how some “normal” human frailties are pooh-poohed while others are given great support. Perhaps this is a topic for a guest post? Let me know if this is OK for the post you requested – or if it is too painful, I have lots of other topics.

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  2. Hi Robyn. I’m sorry you’ve had another “big one”. With your family and friends (including us here!) behind you, keep that hope alive and keep looking forward. I’ll admit I’ve always been an optimist, but I believe there is power in positive thought, that we have to keep creating our new tomorrows even if it is from the ashes of our old yesterdays. Ah, I’m babbling, but i want you to know I’m thinking about you 🙂

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  4. Robyn, how very brave of you to share your struggles so openly with us. I hope in doing so, the journey seems a little less daunting, knowing there are a team of people rallying around you in support & love.

    It’s sad how judgement is cast when someone can’t see an illness or disability outwardly. Perhaps we all need to adopt a wee bit more compassion as move through our day to day lives.

    Sending you uber hugs my friend & hoping you find strength in knowing how much we care.

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    • Thank you, Lynn, so much. I feel really blessed with the all the people who hold me in their thoughts and good wishes. I also think it’s way better meds than steroids and Demerol I’ll tell ya. I know I will get through this too – I have at least 4 more of my nine lives left. Hugs back, my friend.

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  6. I am glad that my words and thoughts brought you some degree of comfort, and hope that I manage to do so in the future.

    The world can be a truly harsh place for those with ailments that defy simple definition…I do a lot of science & medicine writing, so I appreciate the sometimes cryptic nature of health. People–and that includes healthcare professionals–will ofttimes blame the sufferer for conditions that do not fit conveniently into our preconceived boxes of well and sick. The compassion that we immediately feel for the unwell can seemingly vanish in a breath when presented with a medical mystery that destroys our illusion of control and understanding.

    Know that you are loved and that those who love you will do whatever they can to help in any way they can. Although you physically bear the condition alone (we wish we could carry it for you if only briefly), you are not alone. You have a multitude of shoulders, backs, ears and hugs at your disposal.

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    • …And here you are again, with understanding information and perspective, PLUS that compassionate heart.
      Yes, I know you don’t recall exactly what you said, but a combination of your comment on my Set Fire to the Pain post and Rebekah’s got me thinking about the cost of growth through adversity, which led me to the growth side of events, which are almost always after the fact and then I went down the lane to seeing if it was possible to shorten the learning curve. “Deep breath* Then I as I started paying attention, I realized how it was changing my perspective.. which actually helped me get past some of the pain -but all of this is leading to my part 2. Not that I have a clue when I’ll write that, but still, at least I have a part 2 to look forward to.
      Hugs are being accepted at this time. Here’s some back.

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  7. I am sorry to learn of your health issues. I will add you to the list of folks in my thoughts and prayers. If nothing else, you have reminded me to be more considerate of people who may not be visibly handicapped but who may still suffer.

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    • Dan, I feel like I’m always saying, thank you Dan, and I am – but that’s only because you are such a consistently wonderful supporter of your blogging reads. I do appreciate that you stick around, and most definitely for being added to your list of folks for good wishes. I do believe that helps.

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  8. Hi Robyn, Im sorry to read of your health issue’s but, I am right there beside you. I’ve been sick for over 20 years with what started out at as Lyme disease and two other tick born illnesses. it has since, possibly? morphed into something else and over the years with no treatment, new things have occurred, old things have gotten worse and each day is pot luck but, I am still grateful for each new day.. Thank you for sharing this post..
    Robyn
    XO

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    • Hi Robyn… Thank you for your kinship in understanding. I definitely get that whole – what’ll be next – morphing thing and the frustrations that usually brings up. I know mine have stymied and unnerved some of my specialists, but I like to think I keep them on their toes and learning. 🙂

      I am sorry for your issues too. There is a whole lot of history to getting to the philosophical understandings and a certain level of resignation that allows for some peace eventually. I hope the pot luck for you tomorrow is very good, for the days after too. Hugs to you.

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  9. I’m so sorry to hear about your health issues, and I’m wishing you the strength required to tackle this one to its knees. I can relate to the support-related envy and have felt it myself. I have celiac which, while serious in its own way, isn’t as “serious” as other health issues. I’m constantly surprised by the people who try to tell me in all earnestness that it isn’t a “real” disease though they respect my “choice” to live gluten-free. A virtual hug to you!

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  10. Thank you, DizzyBee. Geez, that’s fun to say. 🙂 There is so much to understand about the human body. One of my specialists once showed me an incredibly complex drawing with all kinds of letters and arrows – actually compartmentalized quite a bit like a bee hive! Anyway, he said to me, that is about 1 mm of the human body that we can say we understand. I sometimes wonder if the purpose of many of us is to provide the knowledge… Hugs right back to you too.

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  11. Hey Robyn,
    Beautiful lady, I think of you often. Wish I had a crack at the limb-gnawing SOB! As friends, we want to take care of this and fix it for you. If there is any way to do that, please let me know – it could be anything. I’ll show up with my chainsaw… xoxoxoxo

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  12. I hit the “Like” button, but honestly, I do NOT like this post. I do NOT like that you’re in pain. And I do NOT like that any other person has ever made you feel less than wonderful. I wish we lived close, dear Kindred, and we could commiserate together in person instead of email. And I could give you a great big hug! xoxo I’m so sorry for what you’re dealing with, but I have faith that before long, it will be YOU with YOUR foot on the Grim Reaper’s throat, and he’ll be begging you for mercy. And you will feel phenomenal! ❤ ❤ ❤ ❤ xoxoxoxoxoxoxox

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    • I so share your wish… I would love to talk to you and tell you all about it. So, so crazy, and unfair, and it is what it is, which is over, which is great, but still… As for the Grim Reaper, oh woe be to him if my friends manage to nab him and I love all my friends so much for that and all the support they have given me in all the other areas of my world. Loads of love back to you, Kindred…. xxoo.

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  13. Thanks for your bravery, as always, in sharing Robyn. It sounds like it’s been an intense few months and that you are navigating your way through. (I saw this post by way of your latest, btw.) sending hugs. Cheers to resiliency and courage.

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  14. I’m now only a month behind in my reading, phew! I hope your flare-up has calmed down again.

    It’s really horrible when they can’t tell you what’s wrong or how to fix it. I think the uncertainty and unknown and not knowing must be more difficult to live with than being told you’re terminal.

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    • Oh my gosh, I didn’t realize how much I’d missed in some of my responses! You are too funny, sweet woman! Reading so many of my posts in huge chunks. Gave me quite a chuckle. Thanks Lou, so much for your concern and kindness. You too are a part of my medicines. I think we’ve got a little bit of the course to go yet, but so far, I am keeping my head above water. Huge hugs to you.

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