The Holidays and Chronic Illness (Podcast)

The holidays can be a tough time for people with a chronic illness. Obviously, this year will be different because of the pandemic. My thoughts and prayers go out to you and your family this holiday season for a happy and healthy celebration, for those that will be celebrating.

Biden Vows to Help the Disabled Community

Photo by Markus Spiske

If you have anxiety and you also are really concerned about the state of our country, this week was likely not a good week for you. I know it wasn’t for me. The cliffhanger experience of finding out who was going to lead our country into the future was excruciating.

Personally, I believe that there was really only ONE option this election for reasons I won’t get into here. But I will say that I have breathed a collective sigh of relief along with the other half of the country.

I felt the pride of being an American again after watching president-elect, Joe Biden, give his acceptance speech in front of the nation Saturday night. He repeatedly mentioned the mandate he felt to help the American people and the one thing that really struck a chord with me, that stood out most, was his promise to help the disabled community. We are often the most overlooked community. We severely lack sufficient advocacy in our government to create legislation that protects our rights and expands our potential as contributing members of society.

Many in our community are living on the poverty line. Disability checks, if you are lucky enough to make it through the extremely complicated and harrowing system of getting approved, barely cover the essentials of daily living. In many states, companies are not required to make special accommodations for people with disabilities under law — accommodations such as, working from home, working flexible hours and having access to resources in the workplace to help them do their jobs more efficiently. So many talented people fall through the cracks. So many who are just looking for a chance to shine, get overlooked. “That’s all they’re asking for,” Biden said. “A fair shot to succeed.” That’s all any of us are asking for – equal opportunity.

Disabled people also face exorbitant medical fees for things not covered under insurance. It’s not uncommon for many of us to live in debt. The Affordable Care Act has helped minimize this to an extent, but it is nowhere near a perfect system and desperately needs reform. I am looking forward to seeing what this new administration is going to do to help my community. I look forward in hope and trust, because I believe that we are entering a new era of compassion, honesty and integrity from our government.

Those of us who live with disabilities and chronic illnesses are Americans. We deserve dignity and respect and a fair shot.

What A Year!

Mid Summer Check-in Chronically Creative

How's everyone doing? It's summer and it's hot AF. Also, I reluctantly turn 40 and we talk about dealing with remissions and mental health.  — Send in a voice message:
  1. Mid Summer Check-in
  2. A New Venture
  3. Happy New Year & Why I'm Pressing Pause
  4. Happy Halloween Part 2
  5. Happy Halloween Part 1

When Spirituality Becomes Too Sweet


Every Sunday, I religiously watch Meet the Press. It has become sort of like my church. Unfortunately, right after that is Joel Osteen. (Insert eye roll here) Everyone knows this guy — he’s that positive preaching guru, whose snake oil salesmen smile stretches almost as wide as the TV screen. He’s sold millions of books on the bogus idea that believing hard enough and wishing long enough, will bring you blessing upon blessing. Sermon after sermon, he preaches on how God is in control if we just keep trusting. Well, that sounds nice and pretty innocuous, right? I guess. But what about the mother who prayed, believed and hoped but has to face the reality of burying her child because the cancer was stronger than her prayers? Or the family who lost their home despite their fervent praying, hoping and wishing? Then those positive and innocuous messages actually become hurtful and cruel.

Recently, I was listening to a friend’s podcast, ( where he interviewed author Thomas Jay Oord. Oord’s latest book is called God Can’t. He argues in his book that because God is Love, there are many things God can’t do. God can’t take a gun out of someone’s hand. God can’t always cure disease because God cannot override bacteria, cancer cells and the like because these organisms have free will — God defers to modern medicine and people to get most of His work done. There are some things I agree with in Oord’s book, but I would have to say I disagree with the majority of it, even though I am not a theologian.

The larger point, though, is this…

We often hear about how eating too much sugar and artificially flavored foods is unhealthy. But some brands of spirituality are just as sweet and sugary as a box of Fruity Pebbles, yet are consumed in an abundance. Is Joel Osteen really helping anyone in the long run?  Is his spirituality healthy for our souls? Our minds? Our lives? Even if it gives us a temporary sugar high and makes us feel good for the moment, inevitably it will wear off as all highs do, and we will be left with the questions about if what we are consuming is actually doing us any good.

Can we consider the following?

Maybe we need to embrace the fact that our prayers can connect us with Love in its highest form, and with each other — and that can be healing in ways we never gave thought to.

Prayer doesn’t always cure the disease. We need only look around and see the many people suffering who have prayed for over a decade and still are without relief. Maybe God is in the support of the people around us, or in the medicine we take, or the doctors we see.

Maybe prayer doesn’t “work.” Praying for a specific outcome is great, but prayer doesn’t guarantee this outcome. And if you get your desired outcome, it doesn’t mean your prayer worked any more than not getting it means your prayer didn’t work. “Everything is grace,” said St. Therese of Lisieux. Prayer can open our minds to new ideas and guidance that helps us in our treatment. Prayer can give us the strength to carry on or the peace we need to rest.

God is not always in control. You need only look around and see the major cities that have been leveled by Tsunamis and earthquakes. God couldn’t stop those things from happening, but maybe God is in the rebuilding – the making of something new.

God can’t swoop down from the heavens and take the gun out of the shooters hand. You need only look at the media coverage of the horror stories of senseless killing of innocent children. God is in the weeping and mourning with us and God is in the tireless efforts of people who stand up and work toward stricter gun control laws.

Finally, there may not be some grand plan for your life as Osteen and others like him seem to repeatedly suggest. However, your life has immense value and worth. You were created with talents, abilities and ways of being in this world that are unique to you. When you put those to use, even in the smallest of ways, the world is better off for it and forever changed. You are not a puppet on string being dragged along by some divine taskmaster. Your life was given to you and you get to decide what you do with it. There is no one path you must take to get it right. When confused, God will help you, empower you and inspire you but will never coerce you or force you.

So, while I disagree with some of Oord’s theology…I’d have to agree with him that there is a brand of spirituality out there that hasn’t gotten us very far or done much good for our souls.  I think we need to wean people off the sticky-sweet theology of a Higher Power who comes along like a genie in a bottle to fix everything to our liking if we just stay positive and full of faith. Clearly this deity does not exist and faith is not what these people are full of.

Of course, there are miracles. This is a universe where not everything can be understood or explained…just yet. We are dealing with immense mystery. Embracing that mystery is hard and messy and confusing…but God is in that, too.


Photo by Laura Ockel on Unsplash


I’m Sorry: An Open Letter to The Chronically Ill and Disabled

1564195039666871343226 (1)

People say a lot of things. Some human beings have the capacity to talk forever, it seems. They complain, they rant, they get mad, they explain themselves. They go on and on, but very rarely do you ever hear the words that most need to be said…and heard. “I’m sorry.”

I came across a quote that suggested that accepting that we will never get an apology, a sincere apology I assume, life will somehow become easier. When we accept the apology we never got, life becomes easier? I don’t know how true that is because they also say, “Better late than never.” But sometimes it is too late. Too late to save the marriage, too late to cure the disease, too late to repair a broken relationship, too late to see that dream come true. This isn’t meant to be discouraging. No, it’s just one of the realities of life. But I think it’s healing to hear that someone is sorry for what you are going through, especially when that person knows what it is to go through what you are going through.

So, here it is…

I’m sorry for all the ways society stigmatizes you and puts you in a box that you don’t fit in. I’m sorry that you get treated so shitty by doctors and medical professionals that are supposed to be caring for you and helping you. I’m sorry your family misunderstands you or has abandoned you when you needed them most. I’m sorry you are not always taken seriously. I’m sorry for all the harsh remarks and unkind words you receive on a weekly basis. I’m sorry that you often feel invisible and left out. I’m sorry that you grieve over what you have lost, of things that can never be and things that never were. I’m sorry that people label you as “negative” when in reality you are fighting for your life and sometimes it gets too much to bear. I’m sorry that people forget your birthday when they seem to remember everything else rather easily. I’m sorry that your life did not turn out as planned. I’m sorry that it often feels that everyone has forgotten about you because people are too busy dealing with their pain to notice yours. I’m sorry that so many people place so many expectations on you. I’m sorry that you place so many expectations on yourself. I’m sorry that all of your extra money goes to prescription costs, doctor visits and medical tests. But most of all, I’m sorry that I had to write this because it shouldn’t have come from me, but from that person or those people that you needed most to hear it from. And I’m sorry that even if you got that apology, it would be too little, too late.

And for everything else…I’m sorry.


Guest Post — Sr. Melannie Svoboda

sam-manns-399879-unsplashLearn a Lesson from Fido


Sometimes I envy dogs. I’m speaking of dogs with good homes, mind you. Such dogs have it made. They are fed, petted, walked, and played with every single day—and they do virtually nothing to deserve it. Oh sure, they provide companionship, they guard the house when we’re gone, they fetch the paper, or they bark when a stranger comes to the door. But other than that, most dogs don’t do an ounce of real work—unless they fall into the category of “working dogs,” like sheep herders, drug sniffers, sled pullers, therapy dogs, etc.

The primary reason I envy dogs is because they are exceptionally wise. In his book, How to Argue and Win Every Time, Gerry Spencer puts it this way: “The wisdom of my dog is the product of his inability to conceal his wants.” How true that is!

When dogs want to go outside, for example, they’ll stand by the door and keep fussing until someone lets them out. When dogs aren’t feeling well, they don’t conceal this fact. Instead, they droop their head and go lie down in the corner or under a table. When dogs need affection, they tell you by plopping their heads on your lap and looking at you with those pleading eyes until you give in and pet them. If only we humans were a little more like Fido. If only we were better at revealing our wants.

Children are pretty good at revealing their wants. I was in a grocery store checkout line once. Behind me was a young mother and her small son. As soon as he saw the candy display, his eyes got real big and, pointing to one of the candy bars, he announced, “I want that, Mommy.” He had clearly expressed his want. His mother tried to distract him, but he was persistent. Finally, she said, “You can’t have that. It costs money.” To which the little boy replied, “Use your credit card!” I thought, “How quickly they learn!”

If we don’t reveal our wants appropriately to others, then they have to try to guess what we want. And they might

guess wrong. When this happens, we end up with dialogues such as these:

“But I thought you wanted to go away for the weekend.” “No, I would have preferred a quiet weekend at home.”

“Why do we have to go to that restaurant again?” “But I thought you liked that restaurant.”

“How come we never have fish for supper?” “I thought you didn’t like fish.”

There is a real danger in concealing our wants from others: we run the risk of concealing our wants even from ourselves. Several years ago I was in a bad space. I had too much work to do, I was discouraged, and I was exhausted. I went to see a counselor. She was great. In the midst of our conversations, she asked, “If you had two days completely to yourself, what would you want to do?” I had to think for a bit because I hadn’t thought about MY wants in a long time. I was too busy trying to meet the wants of others.

But I finally said, “Sleep.” She said, “Okay. The first day you sleep as much as you want. You can stay in your pj’s all day if you choose. Now, what do you want to do on the second day?” Slowly, I began to name some things… I’d like to see a good movie… I’d like to read a novel… I’d like to go out to dinner with a friend or two… I’d like to visit the wild animal rescue shelter in the park…” And the list went on. The counselor had gotten me back in touch with my own wants. In future sessions, we figured out how I could work some of my wants into my regular schedule.

There’s another reason why it’s important to stay in touch with our wants. It can make us more sensitive to the needs and wants of others. In addition, It’s one way we get in touch with God, for our deepest wants and desires are put into us by God. If we follow them, they will lead us ultimately to God.

How do you stay in touch with your personal needs and wants?

How do you share these with others?

How sensitive are you to the needs and wants of others?

Has there ever been a dog in your life that imparted wisdom to you?

If we follow our deepest wants, needs, and desires we will ultimately find God.


You can sign up to receive weekly reflections by Sr. Melannie here.

The Ambiguity of Spiritual Discernment


“In approaching the Spirit’s movements … [we are called to] a habitual leaning into our souls in God, with a quality of trust in the abyss of divine love there, wanting to see our desires transformed in the light of God’s desire for us. We rest attentively in that abyss ultimately without knowing anything except our desires to embody those qualities of soul in our lives. …

Often we are not given … clear sight and [must] rest in our trust that we will be given enough of what we need to see as we go along. … Sometimes decisions need to be made without clear sight, but with just enough light to take a first step in one direction or another, trusting that the Spirit will shape our path with us as we go along. …

[The discernment process] may well not provide clear specific discernment, but over time … it can provide a way of approaching decisions that frees us from a focus on “getting it right,” that is, finding out just what God wants, or else we will be lost. Instead, we become free for a focus on an ongoing divine/human dance together … one that keeps us living out of our deep souls no matter how vague our sense of what decision to make. …

When we live out of our souls in trust, we become looser about knowing, and willing for a blind walk when that is what is given.”

[From pp. 64-65 in Spiritual Director, Spiritual Companion. Copyright © 2001 by Tilden Edwards.]

An apple a day doesn’t keep the doctor away?

benjamin-wong-485320-unsplashEvery doctor and nutritionist and health guru will tell you to eat more fruits and veggies – preferably organic and non-gmo. While I am all for this type of diet, it’s not always helpful for people with mast cell activation syndrome (MCAS).

MCAS is where your body inappropriately releases histamine and other inflammatory substances causing allergic-type reactions. These reactions can be serious, even deadly.  Even worse, for many of us with mast cell disorders, food is a big trigger. Certain fruits, vegetables and meats can be very high in histamines, making them off limits. Also, fragrances, extreme temperatures, medications, stress and on and on and on. All of these can be triggers. Most of us are on restricted diets. I can only eat 2 or 3 fruits and maybe 4 vegetables at most. So it’s very frustrating to have to keep explaining to the medical community, nutritionists and natropaths why you can’t follow their “miracle” diets that are supposed to make you better.

I was talking to a “healer” recently and he told me that he put his father on this special diet and his arthritis improved significantly.  Do I believe him? Absolutely. There is a lot to be said for the kinds of stuff we put in our bodies and our health. It seemed, though, that it was hard for this man to understand that I cannot just eat a big, fresh, organic salad every single day. I cannot drink green shakes, take supplements or juice my way to health since one grape can land me in the emergency room. It’s a very hard disease to understand, as the nuances are many to say the least. This is why we need more education and advocacy.

There are varying degrees of limitations with MCAS. Some people take meds that help them a lot and they watch their diet carefully to avoid triggers and they have a decent quality of life.  Some are so bad that they need to be on a feeding tube. The rest of us fall somewhere in the middle. We are hyper-sensitive to foods, environment, scents, soaps and temperatures. There are only a limited number of foods we can eat — some of them may be healthy, some of them not. We pop antihistamines all day long, carry an epipen and obsess over food labels. We live hyper-vigilant lives.

So, while I fully support eating healthy, unfortunately it isn’t always going to help us “masties” to get well.  We all know that saying, “An apple a day keeps the doctor away.” Well, for me, it’s “an apple a day gets me a trip to the ER.”

Some quotes for your journey…

camille-orgel-551599-unsplashI have always enjoyed reading the thoughts of others. I love those little books of quotes they sell at bookstores. I guess you can say I collect them. I’ll open them now and then just for fun. Maybe to feel a little better or a little bit wiser. Here are some of my favorites. What are some of yours?

“Do not wish to be anything but what you are, and try to be that perfectly.” – St. Francis de Sales

“Here’s to the crazy ones. The misfits. The rebels. The troublemakers. The round pegs in the square holes. The ones who see things differently. They’re not fond of rules. And they have no respect for the status quo. You can quote them, disagree with them, glorify or vilify them. About the only thing you can’t do is ignore them. Because they change things. They push the human race forward. And while some may see them as the crazy ones, we see genius. Because the people who are crazy enough to think they can change the world, are the ones who do.”― Rob Siltanen

“You think you know someone by looking at their appearance, body language and gestures. You assume when someone is smiling and laughing that they are happy and carefree in their life. But what if that’s not always the case? What about those who smile and are actually hiding a multitude of emotions, pains and struggles in their life? Every person you meet is going through their own battles and we should all be more quick to show compassion and kindness toward one another, rather than judge and make assumptions based off of what we see.” –Kelly Fricke

“I always wanted a happy ending … Now I’ve learned, the hard way, that some poems don’t rhyme, and some stories don’t have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it without knowing what’s going to happen next. Delicious ambiguity.” –Gilda Radner

“Truly, it is in the darkness that one finds the light, so when we are in sorrow, then this light is nearest of all to us.” –Meister Eckhart

“Ask, and it will be given you;
seek, and you will find;
knock, and it will be opened to you.” –Luke 11:9

“You must do the thing you think you cannot do.” –Eleanor Roosevelt

“Have patience with everything unresolved in your heart and to try to love the questions themselves. Don’t search for the answers, which could not be given to you now, because you would not be able to live them. And the point is to live everything. Live the questions now. Perhaps then, someday far in the future, you will gradually, without even noticing it, live your way into the answer.” –Rainer Maria Rilke

“What the caterpillar calls the end of the world, the master calls a butterfly.” –Richard Bach

“Some mystics taught that the human soul comes from God and that the last thing that God does before putting a soul into the body is to kiss the soul. The soul then goes through life always dimly remembering that kiss, a kiss of perfect love, and the soul measures all of life’s loves and kisses against that primordial perfect kiss.” –Ron Rolheiser

“It may be that some little root of the sacred tree still lives. Nourish it then, that it may leaf and bloom and fill with singing birds.” –Black Elk

“Give. But don’t allow yourself to be used. Love. But don’t allow your heart to be abused. Trust. But don’t be naive. Listen. But don’t lose your own voice.” –Unknown

“You do not need to know precisely what is happening, or exactly where it is all going. What you need is to recognize the possibilities and challenges offered by the present moment, and to embrace them with courage, faith and hope.”- Thomas Merton

“A tree gives glory to God by being a tree. For in being what God means it to be it is obeying Him. It “consents,” so to speak, to His creative love. It is expressing an idea which is in God and which is not distinct from the essence of God, and therefore a tree imitates God by being a tree. The more a tree is like itself, the more it is like Him. If it tried to be like something else which it was never intended to be, it would be less like God and therefore it would give Him less glory. No two created beings are exactly alike. And their individuality is no imperfection. Therefore each particular being, in its individuality, its concrete nature and entity, with all its own characteristics and its private qualities and its own inviolable identity, gives glory to God by being precisely what He wants it to be here and now, in the circumstances ordained for it by His Love and His infinite Art.” — Thomas Merton, New Seeds of Contemplation

“Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying, ‘I will try again tomorrow.” — Mary Anne Radmacher

“Ring the bells that still can ring. Forget your perfect offering. There is a crack, a crack in everything. That’s how the light gets in.” – Leonard Cohen, Anthem

“Do not oppress one another.” – Leviticus 25:17

%d bloggers like this: