Feeling Free to Say “I Am Less Than Able Today”

Why do I still feel embarrassed to express to my “well-bodied” friends that I am less-than-able on many days? Partly, I struggle to find the right words; the delicate balance between clear explanation and what I fear may sound like whiney complaining.

And then there is the bigger problem: the fact that I look so well. Especially on the days that my friends do see me. Because it is the days that I feel well enough to wash my hair (perhaps!), put on some makeup, get out of my lounge clothes, smile, and be present, that I also am able to keep my plans with them. They’re not seeing me on the days when my arms feel like 20lb. weights, too heavy to lift and brush the bed-tangles out of my hair. Or when I am still wearing what I woke up in, which many times even means what I went to bed in, because I was too exhausted to do anything but take off my bra the night before!

And truth be told, the sound and timber and strength of my voice doesn’t often change that much when my physical body is feeling poorly. And for me, my larynx can be in spasm causing hoarseness when I do feel well. So since that’s such a poor barometer for “feeling well vs. feeling poorly,” why is it then that people seem to think that what they hear over the phone lines is some sort of truth serum?

How many of you have heard those dreaded words, “Oh, but, you sound so good today! I’m glad!”

Unfortunately, they are often spoken before I’ve even had a chance to say how I am truly doing. So, I hesitate. Because it gets tiring saying, “um, thanks. But, actually, I’m not doing so hot today.” And even with my most well-intentioned friends and loved ones, I sometimes hear skepticism creep into their response. Because it just doesn’t make sense: but they sound so good…?

I share this all because I think it is a helpful reminder for anyone: both those of us struggling with day-to-day- fluctuations in our physical (or mental) capabilities and for those who are friends to, family members of, or caregivers for (including professionals) those with these “Invisible Illnesses.”

A quick reminder: Invisible Illnesses encompass a wide range of conditions and diseases. Take the common condition of arthritis, even. Yes, a joint could be swollen or red, but many times it can ache with no outward physical manifestation. So now think of all the conditions that effect our “internal systems,” from brain chemistry, to GI disorders, blood, vein and heart conditions, nervous system pain and disruption, connective tissue deterioration… the list goes on and on. These are the “Invisible Illnesses” that hide behind an external mirage of wellness. Wouldn’t it be handy if when something was ailing or failing on the inside, a bright red “warning spot” would emerge on an external location?! I sure would find this handy! Not only for letting others visibly know something painful is going on, but also to help pin-point for both myself and my doctors, what system is causing the pain.

Since this warning system technology is yet to be invented, we have to trust what people say. To take them at their word. You don’t have to completely understand what someone is describing to give them love, support and empathy. And unconditional trust in their word.

Sometimes I worry (too much so) that the person I am sharing my ills of the day with will think I am only saying it to get out of seeing them. At least for me, this is never the case! In fact, I am one to mask my true feelings of pain and discomfort just to avoid hurting or disappointing another. I know I am not alone in this.

So what can we all do as a collective group who cares for one another, to combat this?

For the “well-bodied” loved one:

1. Don’t Assume: Don’t assume just because we sound okay, or even because we look okay, that we feel okay. Don’t assume that because we were able to yesterday, we will be able to today. Or even, if we were able 15 minutes ago, that our bodies’ are still feeling as abled in This minute.
2. Listen: Please ask us how we are really doing. And then give us the space to truthfully answer. Take our answers at face value; please don’t judge or question (or fill in the blank!).
3. Don’t feel like you need to fix the situation. All we really need is acceptance and acknowledgement: “Wow that sounds hard/painful/frustrating. I am sorry you are feeling so lousy/cruddy/down today.”
4. It’s okay to ask “Is there any way I can be of support to you/help you right now?” But also know that we may not have an answer for that. It’s not that we don’t want your help (and I always like hearing a sincere offer from a friend), it’s just that: 1. We may not truly know of any way that you can help right now and 2. Many times all we need is space and time to heal. Which leads me to…
5. Give us space without expectations. We know (believe me!) how hard it is to accept that there is no clear pattern to our symptoms. We may feel better in 1 day, 3 days, maybe even 30 minutes and that can be frustrating. So we just ask for your patience as we navigate the unknown.
6. Don’t stop asking. This is a big one! And I don’t mean “don’t stop asking how we are doing” (although that’s a good thing, too); I mean don’t stop asking us to do things. Because there still are many days when we are able. And spending time with you, helping you out and supporting you, still means a lot to us. This is what feeds our soul and keeps us striving to be and get well.

Now, onto the “Invisible Illness” group:

1. It’s Okay. You’re okay. You are whole and complete exactly as you are. That was hard for me to write, because I am not just saying it to you, I am saying it to myself. “I am whole exactly as I am.” You/I/WE do not have to be anything other than what we are capable of being. We did not create these illnesses nor are we using them as a crutch to “get out of things.” They inhibit what we can do on a daily business, but they are not the all of us.
2. We are not defined by our illness. Our friends like and love us for who we are: the pure essence of us, our true spirit. Not for our physical abilities or dis-abilities. And if that is how someone defines “compatibility” in a relationship, they are not the kind of supportive friend you need, or deserve.
3. Speak your truth. Don’t sugar-coat the situation. You don’t need to go into great length or detail (unless you need/want to). Just be clear and concise. Remember we are speaking a language only other people with chronic illnesses can understand. A friend of mine with varying daily abilities can say just one word to me, or give me that look, and I get it. It’s not going to be that way with all of our friends and caregivers, so…
4. Be patient. You may need to explain your daily needs and limitations over and over again. This can feel frustrating or maybe even like the other person is questioning your authenticity. In most cases, this isn’t true. Remember: it’s a foreign language, and people don’t learn to comprehend a foreign tongue overnight! Most times, our loved ones keep asking questions, only because they want to understand.
5. If someone asks how they can help, and you can think of a way, ASK IT. Don’t be stoic. Don’t hope that they’ll just guess at what you need. (How could they?!). And don’t ever feel embarrassed. This last one happens to me. Because I start to think “But, I should be able to do this.” Trust that if someone offers to help, their offer is sincere and that if what you ask for is too much for them, they will let you know. Think how helpful it would be to have someone cook you a meal, or run an errand/do a household chore, or even help you to color your hair.
6. Remember that friendship is based on unconditional love. Our friends and lovers chose us for the person we bring out in them, just as we love them for the person they bring out in ourselves. We are all here to be our best selves, but that does not mean trying to be something other than you are. Or can be, physically. There is more to you, there is more to me, than our physicality.

It is up to all of us to spread the word on Invisible Illnesses. To take the stigma and mis-understanding out of them. Because millions and millions of us walk around looking “just like everyone else,” while on the inside of bodies are crumbling.

The first step to undoing all the misconceptions around these illnesses, is to start with a deeper understanding of each other, on a one to one basis. Which includes a deeper understanding of our own needs and abilities, followed by acceptance of same. It’s time to embrace all that we do bring to the world rather than all that we do not!

When Your Resilience Is Tested

When your resilience is tested, where do you go? Who do you turn to? What well do you draw from?

There are times when life pushes back one too many times, and I think, “I Just Can’t Do This Anymore!” And… yet, I do. I keep getting back up and taking steps forward – even if they’re itty, bitty baby steps.

Do we all have resilience in reserve? And, if so, is it something we are born with?: Each of us granted a certain set amount of resilience from the universe. And when the well runs dry… well, the well runs dry. There is no overdraft protection on this account.

Or- is it more than that? A bank that receives deposits as much as it gives us the power to withdraw? Think of it like this: every time we experience a stumble in life, yet find the skills, tools and support to get back up and keep going, we remind our soul, the core of our existence, that we have the power, the determination, the inner strength – – the resilience to face the most difficult of circumstances and survive.  We deposit these resilient memories into our mind’s bank.

And “survival” isn’t always “pretty.” In fact, it can be pretty darn painful. Often, we come out of the experience sporting battle scars- – both the kinds that can be seen and the unseen variety.

I used to look at the criss-crossing roadmap that now constitutes me belly and feel pride. Each mark was another war wound – – a battle I had faced and conquered. For just the fact that I am alive today to tell of it = success. I need to remind myself of my Inner Warrior now and again.

Which brings me back to this Resilience Bank. Every memory, experience and story of survival adds to my well.

Personally, I think it is a combination: each of us is born with a certain amount of Resilience Reserve. Some of us may be granted more than others. Or, perhaps, we’re all granted the same amount, it’s just that each of us perceives this well differently. A half-full vs. half-empty kind of mentality. But that doesn’t change the fact that it’s there, for each and every one of us. It’s what we do with it that matters.

As the old adage goes: “It doesn’t matter what happens to us in life, it matter how we react to it.”

“We are naturally resilient. We have the capacity for growth and positive adaption in spite of the constant barrrage of stress we all feel on a daily basis.” (excerpt from The Resilence Scale webpage).  Test your “Resilience Score” HERE.

But the most interesting and complexing thing about resilience is the stark fact that we actually have to experience strife and hardship in order to build it.

Think about that for a moment.

It worries me that we are so concerned with young children feeling worthy and successful, that we actually shield them from failure. The exact thing that creates self-reliance. Aren’t we actually doing a disservice to this younger generation?

Think back to some of the most monumental building blocks of your youth. Many of them are uncomfortable to relive. But, at the same time, they are also the experiences that shaped us and helped us to learn integrity, cooperation, self-reliance, perseverance, and resilience. We had to learn how to handle failure such as our team losing a game, or disappointment like when our 6th grade best friend decided to stop talking to us in 7th grade, or determination like when we got a poor grade on our report card because we had slacked off on studying.

Failure builds character. When we rescue loved ones from experiencing, and in turn overcoming, strife, we steal this opportunity from them.

These starts and stumbles of my youth prepared me for the difficult adulthood I’ve had to endure. Because my parents and teachers didn’t rush in to save me, I learned self-coping skills (even if I didn’t see the advantage to this at the time!).

Last Sunday marked the 8 year anniversary of my colon perforation and my first near death experience; the night they told my husband and me that I had a 10% chance of living, and to say our goodbyes.

Today, I have a choice – – I can drown myself in that memory or I can look at it in a different light – – recognizing that albeit these last 8 years have been enormously challenging, I’ve been alive to experience them. I chose not to say goodbye on that fateful night and I continue to make that same choice today.

The last 3 weeks have been some of the most painful in my life. My Trigeminal Nerve is inflamed and Angry- causing shooting pains across my check to my nose to my jaw. The lightest of breezes and gentlest of touches can set it off. Combine that with a continuous cluster migraine that’s like an icepick in the top of my head, and it can be unbearable. Yet, I am bearing it.

Am I scared? Yes. Am I angry? Yes. Am I in excruciating pain? YES. But, I also remember that the fact that I am feeling these big emotions means that I am alive. And if I pause and remember, I can use my past experiences to get through today. 8 years ago I was in more pain than I ever thought possible. And, yet, today, my mind shields me from truly remembering the intensity of that pain. I was drenched in fear then- of the unknown. Of the known. But I soldiered through. The pain passed. The fear passed—and eventually even transformed into hope.

So if I had resilience then, what’s to say I can’t tap into it today? I just need to practice it, nurture it, fill up the well, drop by drop.

Resilience doesn’t mean I’ve discovered some magic button to prevent me from experiencing some future strife (I wish!). And it doesn’t mean I bounce back from hardships unaffected or unchanged. It does mean that I don’t let the fear of these difficult experiences keep me from experiencing life now. It means that I know that in the past, it has passed. Which means, that this too shall pass. I will be okay. I will survive.

May I Decide For You?

Why do we profess to know what’s best for others? Especially loved ones? Is it because we think we know them intimately more than they even know themselves? This is something that often happens with those battling chronic illness and daily limitations.

Our loved ones, out of fear of pushing us too far (IE: making us “sicker”), make decisions based on our well-being without ever consulting us. Many times, these decisions are made behind closed minds, during the pre-conversation/contemplation phase and we never even know different possibilities existed. And because they are never presented to us, we are never given the opportunity to make our own choices (and, yes, even mistakes).

The decision has already been made for us, under the guise of “loving-kindness.” I know that I have been on the receiving end of this kind of decision making multiple times, especially from my husband. My most recent example occurred in an interaction with a dear friend:

Over the last couple years, I have been mentoring this friend. I was, from the beginning, clear and honest about my physical time limitations but committed to communicating in alternative ways; and asked that if our relationship agreement ever stopped working because of these restrictive parameters, she not hesitate to approach me about her changing needs. We went into the partnership with what I thought was an equal agreement. Then, just a few days back, she abruptly let me know that our arrangement was no longer working and she had already found another mentor.

As much as I respect her needs, I was taken aback by the one-sided decision making. When pressed, she explained that she honors the physical place that I am in and would never want to put un-due pressure on me. So she found someone more “well-bodied” and flexible with their schedule. She thought she was coming from a place of loving-kindness.

But, in fact, she took equality right out of our equation. Out of concern for pressuring me, she took away my opportunity to know and express what is right for me. To check in with my own body and decide whether I could do more to meet her needs or not.

What was removed from our relationship was trust in the other person to know themselves, and respect for whatever decision they make. Regardless of our own opinion.

Let me highlight some ways we all do this in relationships:
– Our partner gets anxious in social situations, so we avoid telling them about upcoming engagements until the last minute, so they don’t unduly fret.
– Our parent worries when we travel, so we hide trips from them until we get home, as not to overly stress them.
– We have friends who have chosen to no longer drink, so we don’t invite them to events where there will be a lot of “celebrating,” so they won’t be tempted.
– A co-worker tends to react strongly when asked to do a project, so instead of giving them the chance to process and respond, we just do everything ourselves to avoid a possible conflict.

We tell ourselves “loving-kindness” stories: “I don’t want this (person I care for) to feel bad/sad/disappointed/stressed/worried…” We’ve already analyzed the situation in our heads, come to the conclusion of how the choice will negatively affect the other person, how they will respond, and what we will do to avoid this.

But, remember, when you make a choice for a loved one, you are no longer looking at them as an equal.

Those of us with chronic illness often struggle with feelings of being “less-than” (as many well-bodied folks do, too!). We already have to limit so many facets of our daily lives. But, we can still make conscious, thoughtful decisions for ourselves.

Doesn’t every adult want to be perceived as trustworthy of their own truth?

And the thing is. . .

We very well may make poor decisions! We may over-commit which over-taxes our bodies or minds.

BUT… that’s how we learn. How much is too much. And how much is just right.

If the right to make our own choices is removed, we are never able to find the balance on our own.

One of the worst things, is discovering after the fact that you could have been a participant in the decision making process, and that was taken away from you. It’s way worse to learn later that a group of friends went out dancing but didn’t invite you only because they didn’t want you to feel bad because your body is ill-equipped to dance right now. A much better scenario is to be given that choice and decide whether you want to sit and watch at the club or if it’s better to stay home, but it sure felt nice to be including in the invite!

So, next time you find yourself making a pre-emptive decision for another out of loving-kindness, try for a different approach:
– Tell that person about the choice and kindly express your concerns for their well-being.
– Let them know you trust them to make the right decision for themselves in that moment.
– Remind them that you’ll support whatever choice they make; and will give them the respect of keeping lines of communication and gentle observation open.

In all interactions, remember that a partnership means that each party is on equal ground.

Let Corage and Hope Take On a Life of Their Own

Courage and hope have carried me through a multitude of challenges. So much so that they truly have taken on a life of their own. They are my manifesto – they are my legacy.

Recently, a dear friend challenged me to expand on this theory. She is currently struggling with a flare in her chronic illness. And as I listened to her process, I heard resistance. Resistance of what is and what this means to her life right now (cancelling plans, making accommodations). And all this resisting has served is to turn her down a road with only one clear direction: FEAR.

I get this. I’ve been there. I think we all have at one point.

But when she reached out to me and asked me how I can calmly “label and describe” my current medical situation without any attachment, I felt poorly equipped with the words to help her. Until I read the above quote…

I realized that as soon as I put on my Cowardly Lion’s Badge of Courage, I remember that I am resilient, that my symptoms come and go with the tides, and that this too shall pass.

And even more importantly is my Beacon of Hope. When I shine it out away from myself, even when I am steeped in darkness, it banishes the shadows from the corners of my mind. Fear lives and lurks in the shadows. But when I bathe myself in Hope, it takes on a life of its own. It becomes my lead warrior in the battle against Fear. It will not allow me to succumb to the darkness.

So… I actually began writing this a month ago. At the time, it was in reference to a conversation we were having about my current flare in unrelenting, untreatable migraines. I was joking about my body’s reactions to the shift of the barometric pressure: more accurate than NASA! And my illnesses’ inane need to re-announce itself this time of year. Usually with a never-ending, looping parade of crashing cymbals and blaring trombones… all going off within the confines of my body.

In response to this “update,” she expressed bafflement at my ability to be so calm and accepting in the face of the unknown. “How can you let go? How can you not worry that these current symptoms will turn into a 6 week or even longer episode?”

And this is the crazy thing… it has turned into a 6 week + episode. The reason this entry never got posted is my body decided to go haywire over the last month; old symptoms popping up alongside new and disturbing ones, followed by a string of specialists and tests, including hospital stays, with no definitive answer yet.

But, this is the thing, the miracle of it all: the point I was at over a month ago has become completely irrelevant in the face of my current “predicament” (to put it mildly!). I have become sicker. But I have also continued to put one foot in front of the other. There is no formula that I can apply to figure the duration or depth of this current flare. So why would I waste the precious energy I have on trying to come up with one?

And, yet, I used to think I could.

I realized the true question my friend was asking was, “How can you not live in a constant state of fear?” Fear, most of all, that what is so painful now (whether physical, emotional, or mental), will forever be? That neither of us will ever return to a state of wellness… nor balance.

I can’t say I live without fear. It’s what I do with the fear that makes the difference. I don’t let it set up camp inside my mind and heart. I don’t let it put down roots.

The truth is, I don’t know when or if this (seemingly) never-ending flare will go away. But when I start to tell myself a “story” about my current scenario, I push the pause button. I tried to write my own story in the past, a “Choose Your Own Adventure” style. If A happens, I will do B, C, or D.  Or, if I do LMNOP in the exact right order, then X will not happen. And you know what? It did not work!!!!

All it served was to remind me of my current painful situation, over, and over, and over again. And each time I was confident I had it all worked out, life would throw me a curve ball. And I would have to figure it out on the fly anyway.

So instead I remind myself of my history: the places where Courage and Hope won out. All the times I did get better; all the periods there was a reprieve from a painful symptom, however short or long. I remind myself that I have a team around me to help, made up of friends, family and professionals. And that if (only if, not when) my current bout turns into something more severe, I’ll know what to do. That in the past, I did find treatment. I was able to “ride it out.” I did get better, even if only marginally, it was better.

Then I shift my focus onto the positive aspects of the now. All the ways I am engaging in my life, in spite of. That for every five events I have to cancel, there is one that I am able to participate in that lifts me up.

I ask myself: “Whose side am I on? Which side am I going to feed?”
The side of Fear & Despair…
Or the side of Courage and Hope?

No matter what fearful demons are lurking in the shadows, get out your flashlights and banish fear from the cobwebs of your mind. Just like spring cleaning, it takes a while. It also takes constant upkeep. Imagine what your house looks like if you only clean it once a year, now apply that to your mind…

Fear can build up if you let it, and then Despair sets up house.

OR… your can clear your mind and heart with daily prayer and meditation, with deep belly breathing. By keeping your feet firmly planted in this moment, asking “what can I do for myself right now?” By taking all the headspace dedicated to predicting, preparing, and preventing, and switching focus to the present… building support systems and nurturing yourself (a bath, a book, a nap, a good pet snuggle, …).

Before you know it, your soul will be flooded with light, fear banished.
And COURAGE & HOPE will start to take on a life of their own!

Chasing The Elusive “WHY ME?”

Inevitably, at some point in time, after receiving the news that one is facing a long-term or chronic illness/disease, comes the elusive question of ,”WHY?!” For some, this may be a fleeting call to arms, for others, it becomes a constant refrain of, “Why?” or “Why me?” or even “Why, God, why?”

During my last hospital stay, the progressive pastor of my family’s church came to visit me. After the necessary check-ins were taken care of, he turned toward me, and simply asked, “Do you ever find yourself questioning ‘why?’.” I have wondered since what direction he was taking the conversation in, if he had any expectation of what my answer would be. But this has been fleeting, because in all truth, I think he was just curious.

In that instant, though, there was no hesitation; I didn’t even pause before responding: “Yes. I am sure I have asked, ‘why?’ at some point in this long journey. But I have quickly discovered that this is a fruitless pursuit; a question without an answer; a path that only leads me to remaining stuck in the miserable moment.”

But that conversation has left me with equal curiosity. What is the point in asking, “Why me?” in the face of any number of events (I’ve heard this turn of phrase applied to everything from an unexpected car repair bill to a diagnosis of cancer), when one could just as equally be asking, “Why not me?”

The relentless lamenting over the “why” produces an on-going cycle of strife and depression. How could it not? There are no (satisfactory) answers to this perennial question. But there are concrete, solution-oriented, answers to the question of “What next?” We don’t know the why, yet we do know the how. It’s what we do with the how in the now that defines us.

I know I am sick. I know that there is currently no cure for my autoimmune condition(s). I know that my disease will continue to progress, causing a ripple effect that may require future surgeries and invasive procedures. I know that the mountain of daily meds I take to treat my diseases and conditions also create an equal amount of unpleasant side-effects; and that it is difficult to separate the two apart.

But I also know that I am a fighter. I am creative in the face of challenges. I discover new pathways when faced with a seemingly impassable road block. I am a giver of light, love and energy. My mantra is “Hope.” I know that I do not have to face this life alone, unless I choose to isolate. Which I do not.

This is where I can put in action the “What next?!”

Each surgery may chip away at the person I used to be. But that’s the key, used to be. Not the person I am now. Life is not stagnant and neither am I. In the course of my conversation with the pastor, I shared my views on the River of Grace that flows through me, receiving energy from beyond, recharging my own Soul Beacon, before continuing to flow out into other souls around me.

He smiled and said, that sounds like what Jesus speaks of in the bible, “Our Well-Spring,” that source of God that flows through each and every one of us, just waiting to be tapped into.

I have heard many people refer to this well-spring in their own words. I have heard it be called: Universal Energy, Chi (Qi), Kundalini, Indomitable Spirit, God’s Grace, Life Force, Eternal Flame, and many other monikers.

For me, it is my River of Grace. Because a river is an ever-flowing body of water, that both draws from many sources (is not a singular entity) and pours itself into (nourishing) many other bodies of water. Rivers are not stagnant, they are an ever-changing and evolving path through life. And water is our life’s breath; we cannot survive without it and 2/3rds of our bodies are made of it.

My River is a well that never runs dry. Yet, it is my responsibility to drink from it, to pull from it to renew my spirit when it is lagging.

Which brings me to the Grace part. I think of grace as a gift. As the ability to look for the light in a sea of darkness. To see beauty and gratitude, no matter what the situation. To ask “what’s my next step” instead of getting stuck on the repetitive refrain of “why?!?”

And then I decide to look up the official definition: Grace: “unmerited divine assistance given humans for their regeneration” (Meriam-Webster). To merit something, is to earn it. You don’t need to do anything to earn, or to deserve, grace. It’s there for all of us. A gift from beyond ourselves, to regenerate the mind, body and spirit.

We have all experienced unexplained loss, devastating, mind-numbing losses. We have all had to endure unnecessary pain, physical, emotional and/or metal. Or had to witness, powerless, as a loved one is faced these. We have all encountered enumerable challenges, obstacles and sudden change.

These experiences are what define us. It is what has defined me.

But I have also chosen not to have them be the all of me. They are one part of my story. They are U-turns on the path of my life. And instead of sitting down in the middle of the road and stopping, staring befuddled behind, below, and around me. I’ve decided to look straight ahead. To tap into my River of Grace and chart a new course.

This attitude has carried me and allowed me to see my life as full of opportunities. To say, “What next.” Instead allowing myself to feel victimized, always the punchline, left lamenting the “why?”

Think of one area in your life where you can flip your knee-jerk response of “why?” on its head. Start small. See how this one shift in attitude affects your whole day. Your whole week. Your attitude and out-look on the things that come next.

And if you already embrace an attitude of “what next,” please share your experiences so that they may inspire and encourage others!

Hope for the Hopeless

I have been far too absent from the blogging community and I have felt the significant loss of this supportive limb. Each of my days over the last few months have been deeply entrenched in “survival mode.” Not only has my disease been in a deep, unrelenting (and deeply unforgiving) flare, so has my husband’s chronic mental illness.

Many times the caregiver’s needs are forgotten; they stand in the shadows making sure everything functions yet are barely seen, and almost never acknowledged. This fact combined with chronic depressive disorder, is a ticking time bomb for disaster.

And over the last month, that bomb has exploded not once, not twice, but over and over again, as my husband has reached his internal boiling point and has no longer been able to contain nor handle his volatile emotions.

During several of these “boil overs” he has expressed his frustration with the way our life has turned out. “It wasn’t supposed to be this way!” And I have no opposing argument, in fact, I agree. But at the same time, I am not sure what other way it is supposed to be. All he wants, I know, is some reprieve… from the doctors, from our illnesses, from our poverty, stress, worry and fear. It is overwhelming and unrelenting. And when you feel physically “down” at the same time, it’s even that much more difficult to handle the onslaught of continuous stressors.

A couple times, he’s taken it a step further. Vehemently stating that he doesn’t see in any way that this is a life worth continuing to live, if this is the way we are going to live it. He went on to argue that perhaps we are not meant to live long lives. That we might as well give in to our disease processes and let our minds and body fade away like they would have before the “wonders of modern medicine.” He challenged me to “show him” in what way our lives are worth continuing.

Now there is no denying that this cut me to my core and made me question my purpose on this planet. But, there is also something undefinable in me that still keeps fighting. I was armed with arguments of the ways our life does shine (friendships, experiences, each other, etc.), but also knew he is not currently in a place to hear any of these points. So I took another tactic, agreeing with his stance, arguing that perhaps we shouldn’t strive to live past 60, but if that’s the case, then let’s squeeze the all out of life for the next 20 years and go out with a bang! In some ways, I kind of liked (and still do like) this idea.

During this current period of strife and struggle, I keep finding myself humming the Glen Campbell song lyric, “Everybody’s got a hold on hope, it’s the last thing that’s holding me.”

And in reflecting on how we can both have two dramatically different outlooks on the same circumstances, I’ve been reminded of a Cherokee fable. Just recently my mom asked me to refresh her memory about this inspiring story, one I shared with her when she was asked, as a lay Presbyterian, to give a sermon on Hope for her church.

The story goes like this…

Each one of us is born with two opposing wolves inside.

One wolf is “FEAR.” And out of the mouth of this wolf comes a constant internal barrage of anger, greed, jealously, sorrow, regret, arrogance, self-pity, guilt, competition and comparison, feelings of superiority and inferiority, and ego.

Many of us can identify this wolf… we may call it by a different name: our judges or critics, the voice of our short-comings, our shadow selves, or our sub-conscious monsters. But this wolf by any other name, is still the wolf of Fear.

But, there is a second wolf, the “Good Twin” so to speak, who goes by the name of “HOPE”. This wolf speaks softly and gently of love, joy, possibilities, happiness, dreams, miracles, sharing, serenity, kindness, peace, friendship, compassion, truth, love and faith.

As we grow, only one wolf can survive.

“Which one survives?” you ask…

THE ONE YOU FEED.

Think of that for a moment. Which wolf are you feeding today? Are you filling the belly full of the one named Fear? Letting it grow and expand until her voice blots out all other? Or are you ingesting a conscious diet of Hope? Doing things to nurture her growth and development, so that her voice grows stronger and louder until all you hear are internal messages of Love and Faith? So that when you open your mouth, these same sentiments steeped in Hope come pouring forth to everyone around you?
Because the more you share your hope, the more of it comes back to you.

I am so grateful that while at lunch with my mom, she unearthed this memory of years back. Giving me the opportunity to remember not only how I can feed the wolf of Hope for myself, but that the person she came to for inspiration and thoughts on hope, was me. That when many are struggling, they reach out to me. That I have faced innumerable challenges, and have survived. That through my personal struggles, I have been given the gift of passing this Hope on to others.

And that even though my life is far from “ideal,” it’s mine. And it’s all that I’ve got.

It’s up to me what I am going to do with it.

Just for today, I choose to feed the Wolf of Hope. This wolf has soft white fur, and kind blue eyes. She is my protector and my guardian, and she leads me down the path of possibilities.

What is one thing you can do today to feed your Wolf of Hope?

“What Goes Up Must Come Down”

“What goes up, must come down.” These lyrics keep dancing around (banging around?) in my head.  They seem to be the only thing that accurately describes my current state of being. And let’s face it, my life in general.

Once again, the rug has been pulled out from under me. I felt like my life was traveling in an upward momentum. With starts and stops along the way, of course. But, truly could I expect anything less? Still, generally moving in a positive direction.

After such a struggle throughout the fall, with a constantly flaring body unresponsive to current courses of treatment, unrelenting fatigue, and an onslaught of back and forth calls to insurance pleading my case, there was finally some light at the end of the tunnel: infusion treatments were finally approved, literally in the 11^th hour.

I began my Simponi Aria infusions around Christmas and experienced immediate improvement in my symptoms. My morning stiffness went from 3 hours to 2 and even onto a mere 1 many days!! My fatigue was abating and I was able to participate in multiple family gatherings without weeks of post-event “crash and burn.” It was a gift. It was a miracle!

I anxiously awaited my second infusion and experienced similar success, even a tad better this time!  “We may have finally found something that treats my autoimmune illness,” my heat sang with glee!

Visions of days without pain coupled with participating in, instead of just sideline observing my life danced in my head! I even allowed myself to daydream about a future of renewed productivity and purposefulness.

In the last couple of weeks, my body started to crash again (hence the lack of blog posts); locking, swollen joints, pain and fatigue. But this time, I was happy for the symptoms. Strange, I know. But they were clear indicators that the infusion indeed was working because I was on a downward trend heading right into my next scheduled infusion…

This Monday! Hooray!! I can’t wait! Bring on the relief!

But, then, remember the second half of my opening refrain? …

“…Must come down…”

And, come down it has. Crashing down.

Today, was my first follow-up with my rheumatologist since the start of the new infusion treatments.  I gave him the same low-down I just gave you. And he looked sad. Defeated.

“Has the billing office contacted you?” he tentatively begins.

“Guess they’re leaving it up to me to be the Bad Guy.”

What? What is he trying to say?! My heart begins to sink. Am I hearing this right?

Both Medicare and my (supposedly “super-duper”) private secondary insurance suddenly decided to retroactively decline my treatment.

“Its off-label,” they tsk. Tsk.

Well guess what numnuts?! EVERY medication I take is off-label.   I have a RARE disease that does not get studied because it is not profitable for the drug companies whom sponsor said studies. Never mind, that my disease, Relapsing Polychondritis, has an extremely high mortality rate in untreated cases (before discovery, most people were diagnosed post-mortem). Guess they don’t care when it’s only a 1000 people in the U.S. population.

So, now, not only have they denied any future treatments, they have also reneged on payments due for treatments already administered! That’s 2 infusions at the “cut-rate” price of $10,000!!! How can that even be ethical?

Doctor: “Legally, you could be held financially responsible for this amount. Ethically, I could never allow that to happen. And, we could continue treatments if you have a bunch of cash lying around to pay out of pocket.” Wry smile.

Full disclosure here: I just did our taxes and guess what? My husband and I currently bring in a combined annual income of a whopping $33,000! So, yeah, I don’t think so.

So, bottom line… it appears that insurance (or let’s face it, in this case, the government), feels it is more cost effective to keep me chronically ill (meaning more urgent care costs, hospitalizations and the such, in the future) and unable to have gainful employment (requiring on-going SSD payments), then to pay for a medications that will treat my disease (now) and prevent the progression of it.

What kind of upside-down world do we live in?

But, guess what? The ball has once again landed back in my court.  And what choice do I have but to evolve and adapt once again? To reassess life and the options it presents me, to pick up the pieces and try to build something worthwhile out of the rubble…

And I will.

But, for a short bit, I just want to have a pity-party.

To whine, “why can’t anything ever be easy, or at least simple, for me?!”

Because it just is NOT.

There must be some major life lessons I’m supposed to learn this lifetime around.

They say that when you pray for something, God doesn’t give it to you, he (she) gives you an opportunity to develop that skill. But did I really need another chance to practice Acceptance. Resilience. Inner Strength?

It feels like I have enough of that to fill 10 lifetimes.

Sigh.

Toeing The Elusive Line of Life

I am always trying to pin down that elusive line between doing too much and not engaging enough.  Dancing just over the edge into the land of “I am going to enjoy this adventure today even though I will ‘pay’ for it later” and standing at safe distance back, “forgoing opportunities for the sake of protecting my body from the ‘over-do’.”

To me this line is LIFE.

And I am not ready to give up on life yet; to fade into the background, observing others from behind my own personal protective observation glass.

Yes, this option ensures a more stable physical state of being. But it doesn’t guarantee it. I am just as likely to experience an unexpected (I was going to say “unplanned for,” but aren’t they all?!) flare of my physical symptoms after days resting “safely” on my couch.

And there is always one thing that suffers from my hesitancy to participate… my emotional well-being.

So it all comes down to another elusive concept: BALANCE.

I don’t think this is a plight just of the chronically ill.  We may suffer more serious consequences for misjudging our abilities to participate, but I know just as many well-bodied friends who also struggle with this.  Their “price” may just look different: stress, fatigue, or loss of time.

As I tiptoe around my Line of Life, I am getting better acquainted with my limits. For me, I know I will pay a steep price, so I weigh my options and choose the ones that are the most appealing and unique. 

I now pause before I make any commitment (I used to “over-commit” to everything for fear of saying no, only to have to constantly cancel at the last minute, frustrating everyone).

I check in with myself- mind, body and spirit.  I take my own set of vitals, so to speak.

And, no matter what my decision is, I try to clearly communicate with the invitee. I think the guidelines I have set up for myself can be applied to a wide range of situations and people.

It usually comes down to three categories:

1. “I’m sorry, I have to decline this time. But please don’t let this keep you from asking me in the future [big fear=being “forgotten”].  My physical well- or unwell-being is constantly fluctuating.” (insert your limits: time; commitments; family obligations; job stress; etc.).
2. “If it’s okay, I am going to have to wait and decide nearer to or on the day of.  I’m just not sure how I’ll be feeling from day to day right now and I don’t want to over-commit.”
3. OR: “I would love to accept! I am planning on being able to participate but if my body takes a down-turn, I may have to change plans at the last minute.  Are you okay with that?”

I have discovered that the honest approach best serves myself and others. Most of us want to “people please” and in doing so can create an environment of always saying “yes,” leading to feelings of stress and resentment later or a constant cycle of saying yes and then having to change our minds/plans.

By giving people an open look into your life, you are showing trust in the relationship.  As well, I try to always give people the option of letting me know if last-minute changes are uncomfortable for them.  Of course I wish everyone could be supremely flexible to my needs. But some cannot. And this is all part of accepting both my and others’ limitations.

You’ll also begin to discover the friends who truly do understand and are willing to adjust the typical “friendship guidelines” to maintain a relationship with you and those that are just “good time friends.” And that’s okay.

The week-end before last was one of those “seize the moment” opportunities for me.  A friend spontaneously invited me on Thursday to accompany her to Pittsburgh, PA for a one-of-a-kind puppet play by Heather Henson (Jim’s daughter- yes, The Muppets’ Jim!). Now, this was a huge risk for me. It was for just one night and would require a minimum drive of 6 hours both ways. Two “no-no’s” in my typical Boundary Box. But sometimes boundaries are meant to be broken, and this was one of those times.

Not only was it an amazing adventure and bonding experience with a dear girlfriend, it provided me a chance to be honest about my chronic illness in a way I have not before.  Traveling that close with some requires intimacy and vulnerability. And I was proud of myself for not hiding behind the mask of, “I’m okay.”

She knew I had to make many rest and stretch stops.  She saw my feet and ankles swell to the size of Nerf balls. She observed my nightly ritual of 20+ medications. She listened to me when I explained the complexity and history of my disease. She witnessed the “sudden coming” of a severe migraine. She saw me grow breathless because of my pericarditis (fluid around the heart) and the necessity of many “sit and rest” periods as we trekked around the city.

She saw the all of me. And she embraced and accepted me as I am.

Yes, I’m paying the steep price of admission still now 7 days post, but I wouldn’t have changed a thing about this experience. Can I always make this choice? No. But I am also not going to let my fears get in the way of considering similar spontaneous opportunities in the future. I used to always live my life this way… seizing crazy last-minute excursions left and right. And I forgot how much I love that.

I forgot what it is like to not only dip my toe over the edge into the Waters of Life, but to plunge head first into the icy chill of the thrill only to come up breathless by embracing the All of Life.

Where are you making choices in your life that serve not only your physical and mental needs, but also your spiritual and emotional needs? Perhaps you aren’t shying away from “frivolous experiences” because of the limitations of an illness, but because you are overwhelmed and stressed by the sheer complexity of living and balancing life, work and family.

Where and when can you throw caution to the wind, even for just an hour, and do something just for the sake of doing it?

Go on… life’s waiting for you!

Open Letter to “Normals:” Please Read

I came across this letter posted on another blog.  It was originally written to help understand what people with Fibromyalgia live with.  But it is pertinent to all the patients who are and family member of the chronically, “invisibly” ill. So I tweaked it a little. And would be forever grateful if you took a moment to read it (and share it)!

Open Letter To Normals,

These are the things that I would like you to understand about me before you judge me…

Please understand that being sick doesn’t mean I’m not still a human being.  I may have to spend most of my day flat on my back in bed or on the couch in jammies, and I might not seem like great company, but I’m still me stuck inside this body.  I still worry about school and work and my family and friends, and most of the time I’d still like to hear you talk about yours too.

Please understand the difference between “happy” and “healthy.”

When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means…  I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker than ever.  Please, don’t say, “Oh, you’re sounding better!”  I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome. Happy ≠Healthy.

The same goes for “looking good.”  If I have the energy to, I like to put on a little make-up and a favorite sweater, maybe even curl my hair.  But looking good does not always equate to feeling good.  That’s why they are called Invisible Illnesses.  Looks can be very deceiving!

It is okay to say, “You sound happy today.”  Or, “I know you may not feel well, but you sure look pretty today!”

Please understand that being able to stand up for five minutes, doesn’t necessarily mean that I can stand up for ten minutes, or an hour. It’s quite likely that doing those five minutes has exhausted my resources and I’ll need to recover – imagine an athlete after a race. They couldn’t repeat that feat right away either. With a lot of diseases you’re either paralyzed or you can move. With this one it gets more confusing.

Please repeat the above paragraph substituting,
“sitting up”,
“walking”,
“thinking”,
“being sociable”
and so on  …. it applies to everything.

That’s what a fatigue-based illness does to you.

Please understand that chronic illnesses are variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the bathroom.  Please don’t attack me when I’m ill by saying, “But you did it before!”  There is no formula to follow with my disease.  If I have the energy on one day, I will seize the opportunity and engage in the next present activity.  Just as likely (or even more so), I will get up with the intention of following-through on a plan, only to discover I am utterly exhausted after just getting dressed and will have to lie down.

If you want me to do something, ask if I can and I’ll tell you. In a similar vein, I may need to cancel an invitation at the last minute. If this happens please don’t take it personally (I’m just as sad and upset about it as you!).  I still like to be asked, even if I have to bow out.  It’s hard to have a chronic illness and to be excluded from events because you don’t want to make me “feel bad.”

Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse.  Chronic Illnesses like Fibromyalgia, Lupus, Arthritis, M.S., Polychondritis (me!) and Abdominal Conditions, may cause secondary depression (wouldn’t you get depressed if you were stuck in bed for years on end!?) but it is not caused by depression. Telling me that I need some fresh air and exercise is not helpful and truthfully, incorrect – if I could do it, I would. And please understand that if I say I have to sit down / lie down / take these pills now, that I do have to do it right now – it can’t be put off or forgotten just because I’m doing something.

Chronic, Invisible Illnesses do not forgive.

Please recognize that I can’t spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with a chronic illness.

If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends or family members (or friends of friends, for that matter!)  make a suggest at one point or another. At first, I tried them all.  But then I realized I was using up so much energy trying a myriad of treatments and “cures” that I was making myself sicker, not better. If there was something that cured, or even helped, people with Fibro, CFS and all the other “invisible illnesses,” we’d know about it.  This is not a drug-company conspiracy. There is a worldwide network (both on and off the internet) between people with chronic, invisible illnesses, and whenever there is a new, valid treatment option available, we already know about it (mind you, they are far and few between).

We’ve had to find acceptance in the frustrating fact that medicine has not caught up with the growing cases of autoimmune illnesses. The best support you can give us is to accept this fact yourself.  To accept us as we are, not as you would want us to be.

If after reading this, you still want to suggest a cure, then do it, but preferably in writing.  Please don’t expect me to  rush out and try it. If I haven’t had it suggested before, I’ll take what you said and discuss it with my doctor. Please understand that getting better from an illness like this can be painstakingly slow. (pun intended!)

People with Autoimmune Illnesses have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out. Our bodies are literally attacking themselves and there is no pattern that doctors or patients follow.  Each of our cases is unique and varied.

Don’t misunderstand me, I depend on you – people who are not sick – for many things.  But most importantly, I need you to understand me.

Thank you for your compassion,

The Invisibly Ill

My 2014 Bucket List is Filled With JOY!

 

As you know, I have been mulling over a 2014 Bucket List for the last month.  I want to set my intention for the New Year, so that I expect and accept abundance from the Universe.  But I find myself wary of “asking for too much.”  You know the old fear of “setting my expectations too high only to feel disappointment in the end:” disappointment in the limitations of my physical body, financial resources, time, energy . . .

But I also know from experience that if I don’t open myself up to the possibility of achieving greatness, I will never achieve greatness.  If I don’t trust in my mind, body and spirit to reach beyond the familiar into the stellar, how do I expect the Universe (or God) to?  That by setting my intention and sending it on the wings of my new year’s prayers, I am sending a clear message to God and the Universe that I believe in myself.  That I believe in my hopes and my dreams.

So I decided to attack this personal assignment with gusto! – To choose some goals that my deepest heart desires, reaching just beyond my comfort zone, to where life truly begins.

In the midst of this contemplative meditation, I was gifted resources by my monthly Soul Matters group.  This month is “Living a Life of Character,” the goal being to shift our perspective from a flaw-focused view of “You should be better this year” (IE- fix your imperfections, change those bad habits) to one of building character from a perspective of joy.  I love that!

One of the suggested videos for viewing is a TED talk called “Rethinking Your Bucket List:”

http://www.karmatube.org/videos.php?id=4029

Hospice counselor, Kathleen Taylor, discusses the shift of perspective that happens at the end of life (and can also be mimicked by those undergoing severe/life-changing illness).  That we, as humans, experience three phases in our life on the path to discovering our authentic selves: Youth = fearless, we set our course for life; Middle = we start to question that course; and End = we find answers about that course.

A renowned study discovered that the #1 regret of the dying is: “I wish I had the courage to live life true to myself and not the life that others expected of me.”

Dying (and chronic illness) teaches us that it is never too late to shed what is false and become who we are truly meant to be (authentic self).  She challenges us to think of it in reverse; “that it is never too soon to shed what is false and. . .”

Kathleen suggests we reverse the existential question, “What am I supposed to be doing with my life” into “Who am I being with me life?”  If you are living a life of authentic character, you can let go of the confines of what you should be doing, because doing flows naturally from being.  As Elizabeth Gilbert says, “God shows up in us, as us.”

Unfortunately, this spiritual revelation usually doesn’t occur until the time of death.  When people have no time or strength left to be anything other than they truly are, they become their authentic self. Psychologists have studied and identified a developmental stage of growth that actually occurs at the end of life: people “find a deeper sense of self and finally awaken to the preciousness of time.”

Haven’t you ever encountered an ill person who is completely open and honest; who doesn’t fear changing their mind; who freely apologizes and forgives; who expresses love wherever and whenever; and who finds joy, even in the smallest of moments?

Kathleen Taylor states that as the body slows down, perspective shifts, and the person’s mind, heart and soul actually expands. Neil Sulanger, wrote as his ALS progressed, “As I diminished, I grew.  As I lost so much, I finally started to find myself.”

I have experienced this; when I was teetering on the edge of death.  I’ve just forgotten.  But my own experience combined with this spiritual exercise has reminded me that we all have the capacity to find ourselves.  So, my Bucket List is going to be a combination of the traditional (physical acts) and the existential (character trait).  I am going to focus on who I uniquely am and celebrating that… finding joy in all the ways I can and will contribute to the world.

My list includes ways I will nurture my creativity and curiosity; ways I will expand my knowledge of myself and the world; activities that will change my perspective and challenge my bravery; opportunities to expand my capacity to love and be loved; ways to be a leader and to promote justice; prospects for forgiveness and humility; and many moments for transcendence: to appreciate beauty, foster hope, and increase my spirituality.

I am including my list with the caveat that it is not static; my list is not set in stone.  I am keeping it open and flexible for the abundance of opportunities that are sure to come my way this year, as long as I keep my heart open to receiving them!

Please share your bucket list experiences too!!

MY 2014 BUCKET LIST:

1. Trip to Arizona (get health evaluation at clinic and visit healing-energy sites)
2. Get my driver’s license
3. Take Hubby on surprise getaway (like he has so often done for me!)
4. Take 2 art courses: one to hone existing skills (advanced drawing or painting) and one in a “new” medium (stained glass or silver work)
5. Return to Cape Cod for vacation
6. Rent a speed boat
7. Hang-glide or para-glide
8. Bond with my sister-in-laws
9. Take my nephew on an Auntie-Nephew adventure (as yet to be defined!)
10. Try Paleo diet and document dietary intake/symptoms
11. Go deep-woods yurting
12. Learn Reiki
13. Go on trip to Lily Dale (spiritualist center) with my girlfriends
14. Get my art featured in a coffee shop, restaurant or gallery
15. Engage in volunteer activities with young children
16. Write blog entries at least 3x/wk. so by end of year have enough for a book, if want
17. Start a Gratitude Jar filled with moments of joy, hope, beauty and love that I will review at the end of year
18. 18.  Love widely, listen deeply, encourage others, value self, embrace joy, spread love & light, embody hope, express creatively, laugh with abandon, forgive from a deep-well of kindness, practice compassion, and be the gift as much as I see the gift of this world.