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!

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!

It’s Summer; Time to Pull Out the Sneakers! What?!

So, it’s often said that “Summer is Sandal Season!”  Well, I got the great news that for me, this “Summer is Sneaker Season!” Yeah.  The day before I left for vacation, I had an urgent appointment to see a podiatrist.  I had been experiencing pain in my left heel, at times, so severe that I couldn’t put any weight on it. Obviously concerned, I was grateful to get a last minute office visit. After I heard the diagnosis and treatment plan, let’s just say, I was less than enthusiastic.

It’s hard when you live a life of “restrictions” to find out that there is but one more area of my life I now need to adjust to meet the “needs” of my chronic illness. When the weather warms, the first thing I anticipate is pulling out my beloved sandals and all the colorful nail polishes that come with the season! It’s truly one of my last indulgences.  There are so many modifications I have to make to my daily living, and showing off my sexy feet (the one area that doesn’t puff up with Prednisone weight!) is a luxury I just don’t feel like giving up!

I know I am acting like a toddler throwing a tantrum over imposed rules.  But, I don’t care!  I take so many things with a smile on my face, my chin held high, my thoughts focused on the positive rather than the negative.  I didn’t fight the podiatrist when he delivered the news that I had torn my posterior tibilial tendon and told I needed to immobilize my foot for 6 weeks or I was at risk of a ruptured tendon (all said with a wagging finger. Tsk. Tsk.).  He proceeded to tell me that the typical treatment would be a “boot” (those big, clunky walking casts that go from toe to knee).  Thankfully (?) he said my back would hate him for this (I have had two lower discectomies for ruptured discs) so it eliminated this option.  The only alternative is to wear solid, athletic sneakers at all times. So I tried, I really tried, to look at the positive; sneakers were a heck of a lot better than a boot, right?  But, at the same time, all I could hear was this mocking voice inside my head, “Well, won’t you look hot on the beach with your bathing suit and sneakers!”

I have been the “good patient” and tried to follow the treatment plan (which also includes daily exercises, massage and ice) to the best of my ability.  It’s been well over a week now and even on vacation, I wore my sneakers most of the time.  But I have always hated having my feet confined.  So when I need to “free my tootsies,” I don the prescribed orthopedic flip flops, a much more promising option. Alas, I was told they were only for getting out of bed; they would be my “next summer’s shoe” (more finger wagging. Tsk. Tsk. Tsk.).

But, here’s the kicker.  My body does not like change!! Any change.  A change of footwear has been a huge trigger for a cascade of symptoms.  Following orders, I shove my feet into the only sneakers I own, heavy hiker sneaks, and my body rebels.  For me, the weight of just a couple extra pounds dragging me down is enough to trigger a flare. More parts of my feet than I knew existed hurt, my feet and ankles keep swelling into nondescript shapes, and it has thrown my whole lower body out of whack; knees, hips, back…

And the number one feature of my autoimmune disease, Polychondritis, is the attack of connective tissue.  Hazzah!  Tendons are connective tissue.  Just like this disease has marched its deadly forces through every inch of my body, it has now reached my feet!  Also, the tendon I injured is a whopper.  It runs from just under my heel, around the inside of my ankle, up to my Achilles.  And by tearing this, it has inflamed my plantar fasciitis (ligament) as well as my Achilles Tendon.  I certainly don’t want to risk rupturing any of those (I keep envisioning athletes suddenly crumpling to the ground. Ugh.). This one tiny, torn tendon has caused a ripple effect, inflaming all the tendons and ligaments in my feet.

Today I am struggling mostly with finding a happy medium.   A way to heal my heel (hardy-har. har.) while also soothing the rest of my joints and tissue.  Right now, I am in way worse pain than when I walked into the doctor’s office.  And that’s not a good solution for any of the things that ail me.

But, just being able to “say” these feelings out loud is a relief.  I have to trust that the rest will come with time and patience.

In and of itself, I realize that communicating my disappointments, my worries, my fears, is healing therapy.  Because holding all that in behind the mask of a smile only adds stress to an already stressful situation.  What are you holding in today that could be shared? Whatever trials you are facing, free yourself from the cage of stoicism.   I guarantee you will find relief in the comfort of shared pain… we don’t have to face life’s ups and downs alone! 

All It Takes Is a Little Note of LOVE

Imagine my surprise when I discovered this “love note” (photo above) tucked in my mail amongst the bills, catalogs and fliers!  At first glance, I was confused to see this hand written envelope, thinking; it’s not my birthday yet, I haven’t accomplished a feat worth celebrating, there are no other recent milestones reached.  Why would someone be sending me a note?!  And therein lies the beauty… this love note was written and sent just because.

I savored every moment of this gift… from the happy orange envelope, to pulling out the crimson rice paper and unfolding it in anticipation, to absorbing each lovely word and sentiment.  While I read, my husband was peeking over my shoulder. Little did he know that this note was meant for him as well!  When I finished reading aloud, he audibly swallowed a lump in his throat and with glistening eyes expressed his gratitude for our kind friends.  I on the other hand, had no words that could express my feelings in that moment.  I felt a warmth spreading over my entire body, I was enveloped in a hugging embrace.  I felt the power of words.

We forget the “power” our words have, both spoken and written.  They have the influence to lift another up, to tear another down, to give bits of hope, to rip all hope away, to encourage, to shame, to support, to abandon… All it takes is just one word.  It is wise to choose our words carefully, to use them to create a word filled with love, light, peace and hope. 

One simple, yet oh so powerful way of doing this? . . . through The Art of The LOVE LETTER!

It’s funny, even before I received this love note, I was already drafting this blog entry, unbeknownst to her.  Several months ago I had read about a national movement called “More Love Letters;” a calling to citizens to spread their love in a disconnected world.  Their mission completely resonates with my own mission, to spread hope, one person at a time.  It’s such a powerfully effective way to spread love on to those we don’t even know and may never meet.  And, it’s done anonymously, which I think is beautiful.  Check out their website to learn more: http://www.moreloveletters.com/ and to read about dozens of stunning examples of the love letter movement in action.

SO NOW IT’S TIME TO GET STARTED ON SPREADING YOUR LOVE LIGHT!

Sit down and write a love note to someone who is significant in your life.  It doesn’t matter the quality of your penmanship, handwritten is always the most meaningful!  We live in the age of digital communication, abbreviated thoughts, and deleted sentences.  Write something that can be literally held close to the heart, that can be displayed, that can be kept and re-read for years to come.  Create a piece of history, build a heritage of friendship.

When writing a love note, whether to someone you know or to someone anonymous, your sentiments don’t have to be lengthy, they should just be thoughtful.  If you know them, tell them you love them and mention one or two things that are unique to that person, ways they light up the world around them.  If that person is in a place of hurting or pain, send them a few words of encouragement, let them know you believe in them, and that they are not alone.  Tell them how much they mean to you.

If you are writing an anonymous note, you can use the guidelines from “The World Needs More Love Letters.”  Or, even better, you can write whatever is in your heart.  Breath and say a small prayer of gratitude first, and then let the Universe speak through you.  I believe that you will intuitively write exactly what the recipient needs to hear.  Don’t include personal information; just let them know that the world loves them, and that they have a unique role to play.  Encourage them to let their inner light shine and to spread happiness and hope to others.  You may want to remind them that if they are struggling today, it will pass… to hold on and never give up!

The most important element of the anonymous love letter?  The envelope!  Make sure it is bright and eye catching.  Write in large letters, both to catch someone’s eye but also, so that it (hopefully) won’t get thrown away. See my personal example and others on the love letter site to give you inspiration.  Are you artistic?  Include a drawing.  A photographer? Add a picture.  The ideas are endless!  Embrace this activity and most importantly, pour a ton of love into whatever you create, whatever you write!  That passion will shine through.

Where to leave the letter?  Anywhere there is traffic… tucked in a store shelf, in a cushion at the airport, in a magazine at the doctor’s office or hospital (two places people are often in need of a little extra love), next to the creamers in the coffee shop.  The options are endless.  As for me, I am going to keep my love letter in my bag and trust that the right place will present itself, and when it does, I’ll be “armed with love!”

Don’t get caught up in drafting the “perfect note.”  Perfectionism only paralyzes us from ever achieving action!  The letter that carries the most impact may just be a hastily written note of love and encouragement scribbled on a piece of scrap paper and left in a waiting room.  It makes my heart swell to imagine finding a note while anxiously waiting to see a doctor.  I picture myself flipping through a magazine, when a piece of paper flutters to the ground. I pick it up and all it says is, “Smile 🙂 You are loved today!  Whatever you are going through, you are not alone!”  How simply eloquent is that?

When I read my own love note from Adele, I was deeply touched that my friend felt inspired by my blog.  It’s difficult for me to accurately express how much this means to me.  I hadn’t explicitly put out a calling for my readers to send love notes, I don’t even remember if I mentioned it or not.  But, that’s the beauty of this forum, this exchange of thoughts and ideas, the reader takes from each post what they need to hear in that day.  And this friend read between the lines and unearthed exactly what I needed… to be loved.

I have already re-read my love note almost a dozen times since receiving it yesterday.  Talk about inspiration for me to pass on the same to others…

WHO ARE YOU GOING TO PASS YOUR  LOVE ON TO TODAY?

Let Your SOUL BEACON shine!!!

(Don’t forget to leave a comment about your love letter experience… inspire others with your sharing!)

 

hugs, exponential

Several months ago I was at a Unitarian Universalist service where the meditation reading was about making physical connections.  The sermon was about following in the footsteps of role-models who have lived before us from as far back as Jesus Christ to the most recent losses in each of our individual lives.  I hesitate to bring theology into my blog and there are many different views and individual opinions as to whether Jesus is the son of God.  But one thing almost everyone can agree on is that Jesus was an influential figure who has positively impacted people with his compassionate ways for thousands of years.  This day, the focus of the sermon was on the historical facts, so that each individual could take away their own interpretation and, in turn, motivation to “live differently”from the example of this man’s life.

I, personally, feel strongly about the ways to carry his message on in my own life.  To me this means:

What can I do in each of my interactions, with both people known to me and those who have yet to be known, to spread a message of love and hope?  How can I look beyond external qualities to see the energy of the soul that lies beneath all of us?  How can I recognize when someone else is in need and reach outside of myself to embrace them, support them, lift them up, hold their space, help them to feel loved?

It doesn’t have to be a “grand gesture,” sometimes the smallest package carries the biggest present: a kind word, a reassuring smile… a hug.

While the pastor was encouraging us to “think compassionately,” I started to hear a small, insistent voice in my head.  It whispered, “Lean forward; give Erin a hug.”  I tried to shush this increasingly louder refrain and refocus my attention on listening to the remainder of the sermon.  The voice continued, becoming more and more demanding.  I attempted to quiet my mind, “Stop it!  I’ll give her a hug after the service.  It’s not appropriate right now!”  Now mind you, we were sitting in front of the entire congregation, second row, with Erin seated in the front row.  As well, this women I was being “encouraged” to reach out to, I know only as a social acquaintance and had no idea how she would receive my “spontaneous hug.”  Let’s face it; I was overly concerned about social decorum (completely missing the mark on this opportunity to practice compassion)!

But, I soon realized that this voice wasn’t coming from my head.  It was coming from my heart.  And not only was I trying to quiet an idea born of love, I was directly being willful in the eye of an opportunity to live like Jesus, to carry on the love of those who have died before me.  For me, I was reminded of my father, and the hugs he would so freely share with others.  I was ignoring a direct calling to spread that love out to someone else in need.

So, I embraced this request, subtly leaning forward to touch Erin on the shoulder.  I was just in the middle of quietly saying, “I don’t know why, but I am supposed to give you a hug right now”   when she turned towards me, tears silently streaming down her face.  I didn’t know it at the time, but the sermon had sparked an emotional response of personal loss.  And she was holding all of these feelings alone.  If I had not trusted my intuitive voice, she would of never felt held… felt the love I had to share with her at that moment.  She would have stayed abandoned with her pain.  The hug was brief and even a bit awkward.  But her shoulders relaxed, my mind quieted, and we both felt… at peace.  And after the service, she sought me out for a deep, enveloping embrace, where we just held each other.  Nothing had to be said.  But we both left with a quiet “thank you,” because each of us had been uplifted by the exchange of loving energy.

That same night, I couldn’t get these thoughts and feelings out of my mind as I was going to sleep.  I knew I had to write them down and I proceeded to document one of my infamous “blind poems” (random thoughts written across a found scrap of paper, sans light).  That poem was so organically “right,” I never made a single change to it.  And there is something powerful (I think) in hearing it spoken aloud.  So above is the video creation of that poem, “Hugs, Exponential.”

May it inspire you to listen to that deep inner voice… to reach outside of yourself to embrace another… to be vulnerable, and to reap the multitude of gifts that comes from this openness.