Help Wanted

***I’m going to be bringing some older writings to the blog sometimes. Many of them have been what has helped me process my life in a way that has helped me now.

Below find a writing from July 2024 and, at the bottom, a brief note from Shandra February 2025.

Written July 2024

It took a turn yesterday.  I’ve been living with invisible illness most of my life.  Really, take your pick:  mental illness, fibromyalgia, IBS, Dercum’s disease, Ehlers-Danlos, Thyroid issues, newly created insulin resistance, severe pain disorder – a grab bag of conditions and illnesses that could bring me to my knees if I were to let them.

I was surprised that not everyone had disease like this, too. “What do you mean you’re not in pain all the time?”

I’ve been navigating quite well, actually.  Just trying to outrun the monster that is always in the shadows.

His name is “sick”.  And he’s an asshole.

Sick makes me tired at the most inopportune times.  The fatigue running wide and deep.  He makes me hurt.  Deeply hurt. 

Hurt in a way that knocks me to me knees, (would if I thought I could get up again) and makes me question most of my life’s decisions.  Hurt that burns, aches, and stabs, all that the same time.  He makes me trip as he laughs at my ability to balance.  He fogs my brain as I try to remember a word, a commitment, a conversation.

I have a lot of conversations that I don’t remember I had.  I lot.  It makes it very difficult to navigate my high-level job.  I forget I talked with someone and they refer to a conversation that, for me, didn’t happen.  And then other times I remember crazy-stupid stuff.  A strange encounter.  A story someone told or a meeting we had or someone’s favorite music. 

Sick laughs every time I’m uncomfortable because I can’t remember something I told you. 

He’s going to love it when I can’t remember your name. 

I’ve spent a lot of my energy in my life trying to pretend that, not only am I fine, I’m the best I can possibly be.  It works out well because I like doing things for people.  I like creating space for them, carrying and setting up tables and chairs for meetings or meals.  I like creating outlines that I facilitate in fantastic fashion.  I like being a professional with heart.  Almost like a magic trick, I think.  Look over here and see all the things I’m doing to create this sacred space for us and don’t look at my grimace, my slow walking when I stand up, my limp.  Don’t look at me sneaking my pain medication when my pain has become intolerable.  Don’t “check in with me”.  It knocks me off my game.

So now, now that sick has is becoming visibly disabled, I’m not sure my slight of hand will get me far.  In fact, it will look desperate.  Which I’m feeling this very second.  I feel desperate.

I’m not sure how I feel about becoming someone with a visible illness.  My illness, much like MS, ebbs and flows.  One day I need all the accommodations and supportive tools I can get just to function.  Another day, I’m totally fine and you would doubt the premise of my whole story.

The leap from invisible ( or even hidden) illness to visible disability is painful.  It takes some mental work to realize that what I’ve kept from you or from the world is now your business.  I now have to have conversations with people I really didn’t want to have.  I now have to belong to people’s gaze and misconceptions and judgement in a way I didn’t before.

I asked my doctor a few months ago if I should quit my job.  I was in that much of what I call a “pain crisis.”  I wasn’t doing great with my mental health.  I wasn’t doing great at my job.  I wasn’t doing great at being a functioning human being. 

Like I said:  Crisis.

She said that when people quit their job, they decline rapidly because it takes away what they like to do (if they’re lucky.). And I’m really lucky.

It takes away meaning in their life.  Which is what I need more than ever.

That conversation, and her compassionate and firm direction, catapulted me into the next phase of being sick.  I knew that when I told people:  I have a rare genetic pain connective-tissue progressive disease, I would someday have to acknowledge or deal with or confront or be directed by the word progressive.

A little clarity – rarely, when telling people about Dercums, do I use all the words or descriptors.  It feels overwhelming to me and, if I were them, I would start dozing off after one or two.  The one I leave out the most is “progressive”.  It feels like I’m either asking for pity, or I will be soon.

I don’t think I’m asking for pity.  And I don’t think I want it.  But I know I don’t want to be alone in this.

Help.     

Written February 2025

Looking back at this, I really see my wrestling with whether or not to quit my job.  And I am also wrestling with how to be honest yet authentic in my disease journey.

With work, I went to 20 hours a week in January and I’m loving it!  I haven’t had any sense of not being a functioning human being.  So I’m glad for the writing above.  Glad to know it helped me navigate that difficult decision.

Also, my memory is significantly better! I’m so thankful!

Seeing Me For the First Time

This past weekend I hung out with the “girls” (you can find my story about them under the story tab on this site). We had a lovely time together, as I knew we would. We had planned on staying at home all weekend, cozy socks were gifted, warm blankets at the ready, snow falling gently outside. But yesterday we decided to go to Union Station in Kansas City, have brunch, and see what trouble (adventure) we could get into.

First, if you are in the area, you should visit Union Station. It is beautiful and bustling. We ate at Harvey’s and the buffet was spectacular. It was a great start.

On our way to the parking garage, we discovered the Museum of Illusions Kansas City. And, while it looked like a child’s paradise, we decided to go in and play ourselves. We had a blast! Again, totally worth it. Lots of fun pictures, lots of laughter, lots of memories to add to our already full bank.

This blog post isn’t about any of that. It is about the picture above.

This picture is the first time I’ve seen myself holding my walking stick. My mobility aid that, for better or worse, that I’ve been ashamed to hold. And ashamed to use.

When I’ve talked to a very few people about this, they’ve almost without exception told me that I don’t need to be ashamed or embarrassed. And I love them for their support, no matter how well meaning but ultimately unhelpful it is. ( I DO feel those things, and I DO have some good therapy to navigate those feelings). I have to navigate this. Please keep supporting me, though! However you show up. I need you.

But this is my story and I want you to know what is going on within me. The push and pull that is a constant voice in my head. The “I know I should love myself just as I am” me and the “I didn’t need a walking stick like I do now and it sucks” me.

But I need it. Just sometimes. But sometimes I do.

And so, Sunday I brought her (She is named Sunshine.) along and tried, my very best, to incorporate her into my adventure. I decided, I guess, to see how she would integrate into my life. To see if she drew too much out of me, put too many emotional (or physical - too many stairs and no elevators, people. Come on, we can do better.) burdens on me. To see how it felt. To test it out.

After a while I was fine with it. Not good not bad. Which I think is a win.

And then, I saw this picture and it broke through the shame story I had been carrying around. I look normal here. I look free and happy and very much like myself. And I was. And I am.

Change is hard, no matter what it looks like in a picture in a museum dedicated to illusion. It almost writes itself here. I’ve been stuck inside this illusion of how my life has been for 55 years, Most of it real, of course. There have been loves: family and friends. My son most of all. There has been education and life experience and working with people of all ages as a spiritual guide. There has been deep pain and deep joy. There have been times when others were aggressive, especially towards me as embodied. And there have been times when others were gentle and welcoming. Times when I’ve known I belonged and times I’ve known I was judged and not welcome.

A life.

But I’ve carried, like all of us who are “abled”, the mistaken idea that I will not need to adapt my living to meet my life. Of course, I knew it would come at some point. Age and all. But I thought 10 years. I thought I had 10 years.

I asked my good (great) therapist in my session last week: Am I really as sick as I think I am"? These are big changes? Are they necessary. And she, always wise, said: “Are you really f’ing gaslighting yourself right now?”

Point taken.

And yes, yes I was.

But I think what I needed to see was this picture to know that it is fine. All is well. I still look like me even though I am changing. I still act like me and sing like me and love like me and dream like me and work like me and parent like me. I still show up multi-faceted, like me. And these are the things that matter in the journey of me.

All this walking stick is, is a support to help me be me. And she works quite well.

And, so, here I am. The same Shandra, just a little bit extra. I think, depending on the day (I have a dynamic disability which I’ll talk about another day), you’ll get to know this me and, I also think, you will be able to mirror back to me that I’m looking good and rocking this walking stick named Sunshine.

Because I do. And I am.

Count to Ten

January 9, 2025

I’m smack dab in the middle of a space that everyone with chronic illness/disability/chronic pain/disease (and all you I didn’t name - I see you) finds themselves.

It is the cavern of not knowing -when someone who knows I’m sick asks: “How are you?” I dread it and I’m grateful. Both are true at once. I know that they care and ask because they love me. But, yikes, it is an uncomfortable question.

People ask because we are interconnected. And that which lives and breathes in me speaks to and dances with that which lives and breathes in you. This connection leads, if we let it, to deep relationships of care, support, celebration, love. And I want all those things. And I work hard to get those things. And I hope for those things.

But, when the way those things are expressed is through questions about how I feel on any given day, it becomes overwhelming.

The truth of it is that I think about how I feel way to much just in my own heart and brain. I wonder what it will feel like when I get out of bed and try to decide if I should use my energy on a shower. I wonder what my pain level will be during the night as I prepare myself for sleep by lathering my legs with lidocane and CBD, taking Tylenol, hoping that at least one of these things will cut the twinges of deep pain that, on most nights, keep me awake. I wonder what it will feel like when I sit down or stand up or, let’s be honest, move at all. Or, gosh, just lay there.

But, too, wrapped up in my answer to the question of how I feel is the need to always guess: What will my answer tell you about my capacity to live, to work, to be a friend, to travel, to have dreams beyond my house?

I’m worried that you will see my answer to your question as a limitation when I see it as a reality that lives with all my other realities. I can work and work well. I can be a friend and support those I love. I can take on new adventures that I’ve not even dreamed of. I can travel, I can dream. I can add to my life. Whatever my answer is, it is a moment in my day. It does not define me nor will it limit me.

It is simply an answer, not a determination.

And, I’m always so grateful when people ask. Maybe you have asked. Thank you.

I have had some friends be creative. Some of them have their own illness. Some of them journey with their family or friends who have chronic concerns. They ask things like: How is your day today? Or, what is your pain level today? Or, how did you sleep? Or, what is it like for you today?

These questions are a relief of sorts. The truth is, if you ask me how I am I will always say “fine”. It is simple and easy but leaves neither one of us satisfied. The answer “fine” creates a divide. It is awkward. It makes both the asker and the one who answers stand in an uncomfortable space. Where do you go from “fine” if not to - “really?” or “ good”. But creative questions bring out a little more info: “Today has been a good day.” Or. “I’m really struggling today.” These answers feel safe because it is clear that the asker known what it is like to balance truth with being ok with that truth.

I’ve decided to create a “practice” for counting to ten when I want to answer the questions that come, and will be coming more, my way. My community is small and close and I will be seeing more and more people I know and love as we move towards the summer. It is time to get creative myself and figure out how to answer all the inevitable questions that will come my way, sometimes every day for weeks from the same person. I think maybe a count from 1-10 might be the answer.

I’ll get to work and then let you know when to check it out.

And, today is a good day. Thank you for asking.

In the Beginning

Hi Again!

I’m going to share a three part narrative about what’s been going on with me this past few months. I’ll get more into it over time but here is the word-triptych: (Yes, I’m pretty sure there is no such thing. Until today. :)

Part One:

It is hard to tell one’s story sometimes. Especially when it is wrapped up in courage, sadness, hope, disappointment, and trust. As I’m saying thank you to what has been, in my current position, with Community of Christ , I say welcome to all that is to come.

The future seems expansive even as my life is getting smaller. Illness both destroys and creates. And, as I’m discovering my dream of the future for myself, I’m knowing-deep in my bones-that it will not destroy me.

Part Two:

I decided to move from obscure to specific here. Just before the pandemic I was diagnosed with two genetic diseases. One sort of well known: Ehlers-Danlos Syndrome, and one very rare disease: Dercum's. Both are connective tissue diseases, both cause terrible inflammation, both are (at times severe) pain disorders and both mimic (or are) auto-immune disease.

Both will affect my mobility and ability to move around the world as I've done the past 55 years.

My Dercum's Disease, specifically, is causing mobility issues and is progressing more rapidly than hoped. It is similar to MS in that one day I'm mostly fine and one day I'm using my walking stick and not able to do much at all. It also has this terrible effect in that it wraps itself around my organs in different ways that are permanent. It has already come for my liver and most recently, my heart.

BUT, I'm doing fine. I am tending to my well-being and a big part of that has been the heart-breaking decision to leave a job I was made for and deeply love. As I say - I'm one of the most healthy sick people I know. What I also know, is that leaving a job does not mean leaving community. Your gifts of love through words here has proven that.

I believe that a call is for a certain amount of time or for a certain job, but a calling is for one's lifetime. My call was to support a community through it's journey towards hope in a specific way. My calling is to forever do that same work in a variety of ways - peace work being the most primary

Love you all so much.

Part Three - the good stuff!

I could have never believed how much love and support I would receive around all the stuff swirling in my life right now. But I'm not sure why it is a surprise - I have surrounded myself with amazing, loving and creative friends and have a beautiful family. Thank you all.

Here's the good stuff - (keep reading...I promise it really is good!)

Just so you know, my diseases are still at their early to "beginning- to- dance- with" the middle stage. I am changing my job because I'm wanting to have all the time I can and administrative work in particular takes a level of stress I can't afford anymore. I need to choose health.

And, here's the rest for now: I'm going to continue on in peace work. And a lot of that will flow from my part time job with Community of Christ. (Hooray!). And...big news...I'll be leading the team who will imagine and create the Community of Christ International Peace Colloquy in 2026.

Good stuff indeed!

So, things are good, friends. All is well. I'm at peace. And I know I'm loved. Let's see one another soon!

I’ll unpack some of this over time but I wanted to share the basics with you, friend.

Thanks for stopping by!

Hello

Hello. If you have stopped by, someone (maybe me) has pointed you in my direction. And I’m grateful you decided to take a chance on me and my “writing a world into being”.

I mostly want to let you know that I hope you will find something of value here. That I would love for you to share your email with me so we can stay connected. That a comment either here or on the stories or practices page would be a gift to me. That you can head back to the landing page, scroll all the way down, and sign up for emails announcing what’s new here so that we can do this together.

I mostly want you to know that you belong.

I’ll talk to you soon! Thanks for being a part of my journey.