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!

Fluent in the “Language of Pain”

A recent article in U.S.A. Today discussed the “health care crisis” of chronic pain, stating that 40% of Americans now experience chronic pain… 40%!  Just think about that for a moment.  Thankfully, research institutes are also finally paying attention to this startling statistic and studying ways to treat this epidemic.

What stood out most to me in the article is the description of what happens to a being when they experience unrelenting pain.  We learn to become fluent in the Language of Pain.  It’s the old “practice makes perfect” adage. But in this case, it is completely unhelpful.

Our bodies and minds are wired to learn new habits and behaviors through repetition.  The article states:

“In a sense, chronic pain is not all that different from learning to play the piano or speak French.  The more the body ‘practices’ processing pain, the better it gets at it and the stronger the connections between nerves becomes.”

It speaks of a term, us chronically ill are all too familiar with, “allodynia.”   Allodynia is when pain sensations are so out of proportion with the reality that even the slightest breeze on the skin, gentlest of hugs, or softest touch of a feather, can feel like scalding water, the burn of a blowtorch, or thousands of needles stinging the skin all at once.  This can be a very frustrating condition to explain to “non-sufferers.”  How do you tell someone, “I’m sorry, but your hug hurts me,” without hurting their feelings?!

Chronic pain is defined as pain lasting 6 months or more.  It can be triggered by illness, but also by post-surgical pain that doesn’t go away, injury (even after it is technically “healed”), aggressive medical treatments (especially those for cancer), and chronic conditions such as arthritis, back pain and headaches.

Chronic pain effects 100 million Americans and costs between $560-635 billion dollars per year, yet doctors only receive 9 hours on average of pain education during their entire medical school education!

One of the sacriest facts is that it causes permanent damage to the body.  Chronic pain can literally shrink the brain.  It can reduce gray matter as much as 20 years of aging does!! (according to research at Northwestern University)

The biggest enigma of the pain puzzle for me, is the incongruity of my own personal pain responses.  I actually have an extremely high tolerance for pain when it comes to injury, injections, and other invasive procedures.  And then there’s the flip side… my body can be triggered by God knows what (I always equate it to having a switched flipped). When this happens, I am writhing in pain, the touch of the lightest sheet on my body can trigger what feels like an attack on my body… my nervous system is on fire.  I would sell my soul to the devil to make it stop!

Hence the pain conundrum!

And also the reason why scientists state that suicide rates are twice as high in people with chronic pain.  Chronic pain is highly unpredictable and volatile.  And, currently, extremely mistreated and misunderstood.

Although, they are starting to discover that there are several non-invasive, non-drug treatment options for “quieting the pain.”  I have found many of these helpful (when I remember to employ them!) and I would be interested to hear what techniques others use to treat this painful condition.

1. Exercise:  This can be the hardest to start because when we are in the midst of pain, our minds tell us to be still; we are terrified that if we move, it will only get worse.  But this is the exact opposite from the truth. The USA Today article states, “Exercise is as close as there is to a magic bullet for pain.” Hazzah!  I think of it as re-training the nerves, muscles and brain (just as it has been conditioned to feel pain at every turn).  I started riding my exercise bike daily 2 months back and it has changed my life.  Now when I am having a particularly bad flare of pain, my body actually “tells” me to get on my bike and move. And it works! Truly. NOTE: It may be helpful to begin a exercise program in a warm pool.
2. Acupuncture: Once dismissed as little more than a “placebo effect,” newer studies in (objective) mice show that acupuncture stimulates adenosine, a powerful pain reliever made naturally in the body.  And studies in humans are showing that after acupuncture, there are powerful changes that occur in the nerve pathways, running from the brain to the rest of the body (an important way the nervous system can control pain). Has anyone had success with this?
3. Massage: I swear by this! I see my massage therapist every 2-3 weeks and she has changed my body’s response to painful stimuli. My recommendation would be to find someone trained in therapeutic/medical massage that will work long term with you; make sure it is someone you can clearly communicate with. When I first started, my therapist could only “rock” parts of my body until I got used to touch. Now, even when my body is “on-fire,” it responds positively to her touch; she quiets the hyper-active nerves. There is no one else I would trust to touch me.
4. Cognitive Behavior Therapy, Meditation and Bio-Feedback:  All treatments that use the mind to quiet the body.  I use guided meditations daily and can now almost “leave my physical body” when it is in pain (not always, but often). I know people who have had success with formal bio-feedback training and EFT (Emotional Freedom Technique or Tapping Therapy).

There are other treatment options, not scientifically proven, but people have found comfort with:

1. Chiropractic Care
2. Magnet Therapy
3. Reiki
4. Heat Therapy
5. Hydrotherapy
6. Electrical Stimulation (TENS units)
7. Ultrasound
8. And what I like to call: “Distraction Therapy:” engaging the mind in another activity (something simple and repetitive like knitting, coloring, zentangles, bead stringing, crosswords or puzzle books, music, silly kitten videos!, etc.), until the pain becomes distanced from your physical body. This works wonders for me!

Please share your pain coping techniques, so that we can all benefit from the shared experience of this “painful” condition (pun intended!).

If you are interested in reading the full article, follow this link:

Chronic Pain: A Health Care Crisis

Also, here is a link to the American Chronic Pain Association:

ACPA

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

Don’t Give Up 5 Minutes Before the Miracle Happens

There is a catchy little saying, “Don’t give up 5 minutes before the miracle happens.”  There are times when this concept seems plausible. And yet others, when those five minutes feel like they won’t come for five years, if at all.  Last week was one of those “other times!”  But, I forgot while in the throes of anxiety, stress, worry, fear, and pain that miracles come in all shapes in sizes; that their messengers come wearing a variety of colors and cloaks.

Since August, life has been lobbing one curve ball after another our way.  Starting two and a half weeks ago, it was like the pitching machine got stuck; the balls were coming at such a high speed pace, from all different directions, there was no chance of catching one before the next one flew at my face.  And when all your time is spent juggling the balls of life, the mind is too exhausted to even comprehend the possibility of a miracle.

I knew this would make me blind to any miracle that happened, and I didn’t want to miss a one.  So I started my daily gratitude list, marking ways that “grace” had shown itself in my life.  Many days it was like pulling teeth trying to write down just three things I was grateful for that day!  This started to depress me even more.  I’m not saying the exercise didn’t help to “right size” me on many days; that is, put things into perspective.   But it’s also been awhile since I’ve struggled for so long, each and every day.

I really felt like there was no light at the end of the tunnel.  My weeks were filled with a constant onslaught of medical stressors: five days(!!) of bowel prep for a virtual colonoscopy that discovered a suspicious polyp; a fitting for “absolutely necessary” orthotics that were costing me a mere $500 (no insurance coverage); my autoimmune disease (Polychondritis) that flared in every joint, tendon, and muscle in my body; asthma attacks for the first time in a long time, waking me at night “suffocating”; a subsequent visit to my rheumatologist where he was so concerned he almost increased my Prednisone (IE: steroids- oh, no!) but instead decided to put me on Remicade infusions (half day long treatments that are the strongest this class of medicines gets); the start-up of another “hemicrania continuum” (IE: daily, mind-splitting migraines, unresponsive to treatment); 20+ Botox injections in my head and neck for same (that felt like a barrage of wasp stings and triggered an increase in pain – ouch); a “suspicious” mole removal on my back after early years of over-sun exposure (and a subsequent wound that is not healing);  and lower back and hip steroid injections (never fun!)…

Phew! I am exhausted just writing that all down!

And, the stressors didn’t stop there.  Not only was my disease flared by the change in seasons, but so was my husband’s depression; resulting in daily anxiety attacks (many directed at me. Sigh.).  Several friends experienced emotional crisis during this period, and I was the friend they reached out to for support.  Our cat got sick and needed medical care.  Bills seemed to be landing in the mail daily at the rate of political flyers in November.  And the final straw? Our van, our only vehicle, died.  The frame rusted out and landed on the steering box, and, well… you can imagine the rest!

The fear started to set in.  What are we going to do?  How are we going to afford this?  What if we don’t qualify for a loan?

Then, I took a deep breathe, prayed to my higher power, and took the first step.  Information is power.  And, at that point, I had none.  All I had was mis-information that was swirling itself into a cyclone of worry and anxiety.  Not a good equation for an already over-stressed body and mind!

It got worse before it got better.  But, then, last Tuesday, the miracles began to happen.  And because I had “slogged” through those daily gratitude lists, I was able to see them, and appreciate them as they occurred.  After a few unsavory experiences with used car dealerships, we walked into a particular store and were warmly greeted.  For the first time, I felt like each person looked as us as just another human.  We were paired with a gentle soul from Nigeria whom had worked at this same location for 20 years and took deep pride in his work.  He was not paid on commission and spent hours working with us, never feeling harried or put-out.  He not only helped us find our dream vehicle, he figured out a way that we could afford it.  He gave us free credit-counseling advice, outlining a 3-5 year plan to establish credit (we are a one credit card family; a negative in today’s consumerism America!).   Then my mom stepped in to selflessly lend her name, backing our credit for the bank, so that we would get an interest rate under %5.

Friends graciously lent cars and emotional support.  We had some small gifts of “unexpected funds” come our way.  And yesterday I got news that my mole was benign. Thank, God!

And, I realized, after weeks of “getting by,” we were gifted a day of reprieve and then another.  And that this is the true miracle of life.  This new vehicle and all the angels who helped us to get here didn’t suddenly erase the physical and mental pain we are experiencing.  But it gave us Hope.  And hope is what gets us through the unbearable days. 

At some point, life lets up.  The miracle happens.  We just have to keep our minds, eyes, and hearts open to witnessing it.

Don’t give up.  You never know when your 5 minutes will arrive!

It All Began With a Beacon of Hope

“I feel this little light inside me.”

“That is your Soul Beacon, my child.”

“A beacon?”

“Exactly.  You carry yours with great brightness.  It is how I found you.”

She sits with this thought for a while, twirling a blade of grass. Looking up shyly, she ventures, “I think I understand.  I can feel this glow inside of me, in the deepest pit of my spirit.  And when I think of this light, I can picture a lantern guiding my way through happy times and sad.  Is this like the light you call my Soul Beacon?”

“Why, yes.  Can you imagine why I think of it as something grand such as a beacon instead of a lantern?”

“Well… a lantern usually just lights one person’s path while a beacon can be a light to many.”  She pauses to gather her thoughts.  “And my Soul Beacon, as you say, sometimes feels grand enough to light the entire world, but then other times, it feels weakened.  As if it may even go out.  But, when I use this tiniest bit of energy to reach out to another being, I feel it start to grow again, bringing with it an unknown warmth of serenity.”

“YES.  So wise, yet so young.  Your body belies your true spiritual age.  I shouldn’t be surprised; the spirit is with each of us to see and feel when we are ready.”

His gnarled hand cups the young girl’s with tenderness. “That warmth and glow you feel is your true Life Source.”

“I feel it.  I truly do.”

“I can tell, dear one.  Your Soul Beacon may flicker, but it will never go out.  Many become fearful when they sense the depletion of their Beacon.  Without stopping to reflect on what’s happening, they begin to hoard what little light they have left.  Greed and fear rule their every move.”

“But, that’s no way to live!  How very lonely.”

“Don’t fret; that’s the glory of our Soul Beacons.  You can use your special gift to spread the light to others in need.”

“Gift?”

“Yes.  For without realizing it, you are touching every being you meet.  You are spreading your gift from heart to heart.”

“How do I know if it’s working?”

“The proof is in the result.  Think of someone you’ve met who seemed down and defeated; their energy depleted; their hope lost.”

Looking off at the arriving sunset, she sees the face of the farmer in the blazing riot of reds in the Western sky.  “Yes, I remember now.  I’ve met a farmer who had lost his wife; all he wished was to lie down in his fields and give his life back to the Earth.”

“And do you remember what happened during your visit with this farmer?”

The girl retells the story of her chance encounter with the lonely man.  “As we were talking, I slowly experienced a change in his entire demeanor.  His body began to unfurl from the protectively curled stance I first found him in.  He started to lean in to me instead of away.  Shadows of a smile graced his lips.  And he thanked me for spending some time with him and reminding him of all the reasons he needs to stay here and continuing living, no matter how hard.”

“And, you, how did you feel?”

“Well, I couldn’t understand why he was thanking me.  I hadn’t done much; I just talked with him for a while. I felt like thanking him.  At that moment, I felt beaten down by my journey; I was bone tired and couldn’t see any end in sight.  And then I met the farmer, and my journey had purpose again.  I left with a spring in my step.”

“Young one, when we take our light and shine it on others, they are bathed in our Energy.  Through caring gestures and pure human interaction each of us has the ability to recharge our depleting light sources; our Soul Beacons.”

“So, that’s all it takes?  Just showing some compassion to another being will re-build their energy, recharge their Soul Beacons?”

She pauses and ponders on this.  It still seems so simple.  And then, she sees.  “Ah, it seems like actions we should all be taking naturally.  But, in today’s world, everybody’s heads are down, looking at their own small space.  But, if we look forward, into the eyes of another, we not only validate their existence, we are validating our own!  And, it’s when we feel the most vulnerable and weak, that we have to reach out.  Otherwise, we all are just walking shells of what we are truly meant to be!”

“Now, it’s your job to spread this message from one person to the next as you continue on your journey of life.  The brighter your Soul Beacon becomes, the more people will be attracted to you.  Use this not to gain power over others, but to spread your energy out like a spider web, each tendril touching and igniting a Soul Beacon lying dormant within another.”

“Shine on, young one, shine on.”

It’s Been One of Those Weeks!

It’s been one of those weeks months years!!

I’m in a melancholy frame of mind.  Each day I awake expecting a different return on my daily investment.  And each day it has played out the same story: beginning with hopefulness, ending in defeat.  Yet, I keep getting up and trying again… One Day at a Time.

I can trace this defeatist attitude back to the beginning of last week; the unofficial end of summer, Labor Day.  It’s that time of year when fall ushers in a season of transition, rest and reflection.  My husband and I were struck by the lack of memories created this past summer.  We were overwhelmed by a year that had contained one “loss” after another.  No, it wasn’t a traumatic year (health wise); we’ve certainly have had our share of those.  But in its mundaneness, it almost felt worse.  We felt we truly had nothing to show for the past nine months of “just getting by.”

It’s been a year of “take-aways.”  It has felt like we have been punished, our privileges revoked, for actions we didn’t commit.   We’ve had to accept one “reality of life” after another, with no reprieve.  After five years (!) of a pending lawsuit against the medical providers that ignored my acute symptoms resulting in a ruptured colon, sepsis lasting two weeks, and culminating in the infamous words, “You have a 10% chance of making it through the surgery. You need to say goodbye to your husband,” we were told we had to drop the case.  That there was no doubt the evidence showed clear negligence on the doctor’s part (they even admitted to such in deposition!), but my multiple underlying conditions muddied the waters so much that a jury would be hard pressed to agree on a guilty verdict (and we would be out upwards of $200,000 for even trying).  Hence, Loss #1: no chance of financial security for you two!  Then, just mere months later, we were informed by my GYN that we should never, ever, ever attempt to get pregnant, because doing so would result in a 95% chance of death (for both myself and the fetus).  Major Loss #2: life-long hope, wish, most-certain dream, dashed.   And this cycle of loss has continued; punishments administered just by the sheer fact that I am sick.  They haven’t all been so big and life-altering, but the small punches knock you down over time just the same.

It’s also been a year of “give-aways.”  Unfortunately, not like the Prize Patrol kind, but the bill man’s at the door requesting you give-away all your money kind!  Every time we’ve accumulated a small nest egg to take a trip or do something “normal” (like go out to dinner), we’ve been hit by another unexpected financial necessity: the cat’s been sick, the van’s been sick, my feet are sick and need new soles, on and on!  Thankfully we’ve been able to cover these excessive, unexpected expenses, but it’s also left the cookie jar empty… not even a crumb for a desperate late night snack.   I’m feeling this so markedly in this time and space, because it is now, today, that we were supposed to be on our vacation to Cape Cod; our “healing respite” we called it.  Yet, one more thing we looked forward to for months that we had to forsake, just to get by in the living present.

And, that’s it… the only thing certain in my life is The Present: this very moment in front of me.  My husband bemoans that we should never plan anything, we just have to cancel it anyways.  And, to some extent, I agree.  It’s extremely discouraging to get your hopes up only to have them dashed down over and over again.  It’s one hell-ride of a roller coaster.  But, I can’t go through life without having dreams.  At the same time, it’s a stark reminder to live and enjoy each present moment, regardless of what you are looking forward to on the horizon.  Sometimes, we have our heads stuck so far up in the clouds, we forget to enjoy the amazing scenery beneath our feet.

I admit; I’ve been in a funk.  I know that we all have to make sacrifices, with the hope that the future will be brighter. But, and I guess this is where my P.T.S.D. comes in to play; I’ll get scared that there won’t be a “next time.”  I’ve lost so much time, so many years, to being on my death bed sick that I get fearful when time passes me by that could have been filled with larger than life living.   People will often say, “well, none of us know when our time will come; I could get hit by a car tomorrow!”  Yes, that’s true.  But, let’s face; most people don’t have a clock ticking down at rapid speed, like those of us with severe chronic illness.  We live with our mortality every day.

This “Debbie Downer attitude” has kept me from blogging recently.  Yet, it feels cathartically healing to write this all out on page and share it with you.  And it has helped to refocus my intentions.  I may not be communing with the seals of Cape Cod right now, but I am communing with all of you.  And I am grateful to be fully alive, and fully present in this very moment.

Staying Angry at My Chronic Illness: I’m the One Who Gets Burned

Am I angry at my illness?  This was a question recently posed by a friend who remarked, “I know I would if I were you.”  And it’s given me pause.  I certainly have been angry at my illness in the past, or more accurately, at the doctors who ineptly handled my illness resulting in near-death effects.  Holding on to the resentment aimed at these negligent doctors gave me a false sense of power in a situation where I was entirely powerless.  If I could focus my energy on them; I wouldn’t have to face the reality of my physical unwell-being.

When I sit quietly with this question today, I stay deeply aware of all the emotional currents running beneath the surface.   And none of them resonate with anger; not any more.  Is that even possible?, I wonder.  Yet, it is.  Time heals; if you let it.  Somewhere during my medical journey, I realized the only one I was hurting by holding onto this red hot coal of anger was me.  I waited years to lob that coal at the ones I resented.  In the end I was left standing with the hot coal in my hand; the only one burned by this “righteous fury.”  I got tired of burning myself.  I finally had the insight to see that by holding onto this on-going anger, I thought I was giving myself back power.  But in truth, I was giving these doctors the power, by constantly bringing their negative energy into my life over and over again.

Anger and resentments are tricky things.  Many of us are afraid to let go of anger, because then it will signify that the other side has “won.”  That you are giving in.  But, it’s the exact opposite.  Just because you forgive, doesn’t mean you forget.  We often associate the word “forgive” with excusing someone for their behavior or mistake.  And this can be true.  But, in this circumstance, forgive falls under the alternate definition: “to stop being angry about or resenting somebody or somebody’s behavior” (Encarta Dictionary).  That’s all.  I decided to stop being angry; to put down the hot coal and start living my own life again.  I have not forgotten what the doctors did; I could never forget that.  But, by forgiving, this experience became an extremely unpleasant memory.  It taught me how not to act in the future.  In this case, I no longer implicitly trust doctors just because they have a medical degree on the wall.  If they are not responding to the needs of my body, I go elsewhere.  Because that’s the key, it is my body.  Therefore I am the only one truly qualified to know when something is awry with it.  In this case, by processing my anger into forgiveness, I’ve gained valuable tools in which to address my physical needs.  If I was putting all my energy and effort into hating these people, I would miss the experiences that are happening in the now.

Holding onto to anger is living in the past.  I have already lost chunks of my life to illness, I am not about to sacrifice anymore by reliving the resentment I feel at my physical condition.  That’s not to say I don’t get frustrated with my body and its limitations (see yesterday’s post as a fine example of this!).  I just choose to fully embrace these feelings when they come, validate myself, share them with others, and then let them go.  For me, dwelling in a place of anger only creates a septic environment filled with fear.

So what is the opposite of living a life of anger?  It’s living a life of acceptance.  Again, acceptance doesn’t mean that I have to feel joyful about my situation, it just means that I have come to terms with life’s circumstances; it’s “the realization of a fact or truth and the process of coming to terms with it” (Encarta Dictionary).  The truth is I have a chronic illness; actually several chronic illness.  They are all autoimmune in nature; my body has decided that my organs, cells, blood vessels, bones, and connective tissues are the enemy and will attack them at no cost.  Those are the facts.  It is also my truth that my disease cannot “attack” my spirit unless I let it.  I choose to accept the facts of my situation and to live in what I know to be true.  Holding onto to anger at my body only creates another invasive disease.  It makes me stay stuck in the past, in the “what if’s” and “if onlys.”  If only my life had turned out differently.  Well, it didn’t.  So instead of constantly fuming over my situation and asking (wailing), “Why me?!,”  I’ve decided to bury my anger, plant a garden of acceptance, love and hope and face each day with “What’s next.”  These are my circumstances; it’s up to me what I do with them!

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! 

Struggling to define “My Purpose”

“It is for us to make the effort.

The result is always in God’s hands.”

{Mahatma Gandhi}

What is my purpose in life?  How am I making a meaningful impact on the world?  What role do I play in making society a better place?

These are just a few of the questions I’ve wrestled with since become so ill that I had to stop working almost 7 years ago.  Even just writing down that number takes my breath away! 7 years. Wow. What happened to “my life” I wonder?

My first job, at 13, was a summer assistant in a school-age child care program, and it was the beginning of what was to become my career.  I loved children.  I love children (I just can no longer work with them). I climbed the “child care ladder” quickly, my passion and enthusiasm for my career shining in my every action.  I was promoted from lead teacher to toddler coordinator to assistant director to director; all before the age of 30.  I was 27 years old and the Director of a large center (135 children, 35 staff) looking over the Charles River in Boston, MA and I thought I could see the map of my whole future in front of me.

Before the final edict to stop working full time was given, I was a Staff Training and Development Specialist for two centers.  I was in my element; the hospital I worked for had created this position just for me; there was nothing more satisfying.

And then the “march of the dreaded symptoms” began their invasive take-over of my body. Da. Dum. Dum. It began with the incessant fatigue, migraines, myalgias, infections, and arthralgias we’ve all come to “love and loathe.”  When the arthritis took hold of my knees, my rheumatologist gave the medical orders that I could no longer “bend, stoop, kneel, lift, crawl, …” What? What?! That was my whole job!  How was I supposed to train teachers?  From up on high?  I was a hands-on (or I should say, knees-on), example driven teacher.  But, I persevered. I thought, there must be some way to make this work. But, I was told, no.  Kindly, but, “no” just the same.

NOW WHAT?

I didn’t have much time to think on my dilemma, when I was hit with my colon perforation (rupture) and the subsequent 3 years in and out of hospitals, truly fighting just to survive.  I didn’t question my “purpose” during this time because I knew, instinctively, that it was to be a living example of hope.  I saw the difference my interactions and words could make.  I was so focused on making it through the next day (alive) that I wasn’t overly concerned about where my future would take me.

But, then, somewhere along the years, I lost this trust: this trust that whatever I was doing was what I was meant to be doing in that moment, in that day.

I started to question myself and my place in the world.  I felt like I was more of a drain on life than a source of life.  My disease required me, and still requires me, to feel dependent on a lot of people.  It’s hard to feel purposeful when you feel like you have no independence.

I started to create my art, which was personally fulfilling.  But, again I struggled with how this activity translated into being a contributing member of society. When I was working with young children, nurturing their development, supporting their individuality and providing support and resources to the caregivers in their lives, the answer was clear.  To me, there was no better way to be “of purpose” than to facilitate the healthy growth of our future; children.

But here I was, healthy enough to be “hospital free” but not healthy enough to manage gainful employment.  And I had somehow equated gainful employment with having a positive impact on the world, living a meaningful life.

And that’s where I was wrong.  Once I could separate myself from the “person I thought I was going to be” from “the person I am today,” I could see that my roles have changed, not my purpose.

I am still intrinsically motivated to make a difference in other people’s lives.  I’m just still in the process of defining what that means for me.  And, most likely, will re-define that meaning each day anew.  Just as my body is a constantly changing landscape of symptoms, strengths, and weaknesses, I, too, have to regularly evolve.

So, what does my purpose look like today?  What is my defining life philosophy?

• I know that to make a difference with just one person is to make a difference with many:  for example, by sharing my experiences in this blog, I am exponentially reaching out to the world.  If I can impact just one person, with one word, I’ve made a difference for that day!  My friend, so neatly said to me the other day, “just imagine, someone in China reads your blog and shares something that impacted her at the dinner table.  A week later, her cousin shares with a friend, ‘I heard this really cool thing the other day at a family dinner.’ And then that person shares it with her mother, and on, and on.”  Each one of us “bloggers” is making that difference!

•  Which leads me to… the best way to make a difference is to be “faceless.”  I don’t have to be front and center anymore, the lead director of a company.  I am perfectly comfortable being the “silent partner” whose thoughts and spirit of HOPE are passed on, with no mention of the source. We are all The Source!

• My artistic creations aren’t frivolous.  Every piece I create, from a necklace to a painting, has a piece of my loving energy in it.  And if that creation resonates with someone else’s soul and they choose it to grace their necks or the walls of their home, then I am already passing on my energy.  I am bringing beauty into people’s lives.  What could be “un-purposeful” about that?!

• I don’t have to define what my purpose is going to be on a given day.  I just have to be open to listening to the intuitive messenger already inside me.  My personal goal for a day may be to nurture myself so I can be there for someone else the next day.  Or it may be to pick up the phone when a friend in need calls or even to answer the “calling” to reach out to a unknown cashier that is need of some sort of personal recognition on that day.  Just listen… the answer is already inside your soul.

Today, my life is filled with PURPOSE.  It may be unconventional, but it’s no less meaningful.  No matter where you are on the scale of physical and mental capabilities today, you, too, serve a one-of-a-kind purpose to the world.  Your mere existence is a gift. Try not to lose sight of that!

Today, I just have to make the effort… the results are up to a power greater than me!

We Each Have A Different Peak to Climb

Loomis Yurt; Waterville, NY

A yurting we will go, a yurting we will go! Hi Ho a Merry-O, a yurting we will go!

As is typical with people who suddenly develop autoimmune conditions, I was an extremely active and healthy person before my body suddenly decided to turn on itself.

My husband and I would spend every warm week-end (and many of the cold, snowy ones, too) exploring the great outdoors.   While living in Boston, we would “conquer” a different leg of the Appalachian Trail each chance we got, and we would start a day-off with, “So, what state do you want to explore today?!”  We loved backpacking, canoeing, and camping, especially hidden, off the beaten path gems.

To me there was nothing better than huffing and puffing my way up a steep mountain incline, stopping several times with the distinct feeling “I would never make it,” only to rise to the challenge and arrive at the peak, collapsing in victory and taking in the vista I had whole-heartedly earned a view of.  We would daydream of future excursions with our children; first traveling on our backs and then racing us up the mountain on their own sturdy legs.

But, alas, life had a different plan in store for me.  The week I first became very ill was in fact only ten days after a week-end camping excursion.  We had been tented in a field of high grasses deep in the Catskill Mountains on the border of New York and Connecticut.  It wasn’t until a year later that doctors surmised I may have contracted Lyme Disease.  But, too much time had passed to really tell.  I tested positive, but in an unusual way of course: off the charts high on most markers, but low on the two the CDC considers “test positive.”  But even more ridiculous was the fact that I was told “Currently, there is no Lyme Disease in N.Y.S.”  Mind you, there were high levels in all surrounding states, but of course, deer know not to cross state lines, right? Hah!

No matter the journey, here I am today.  A woman who’s heart still yearns to answer the call of the wild, but whose body is unable to keep up the chase.  But the best way I’ve learned to accept my current condition and balance my wants with my abilities is to compromise.  And that’s where “yurting” comes in!..

As dawn of the first day of summer could be seen on the horizon, my husband and I begin to itch and twitch; our deep craving for a dose of the outdoors had begun! We started to dream of nights around the campfire, star sentinels marching their way across the sky… waking to the brisk morning air, waiting in anxious anticipation for the long brewing camp coffee… unplugging and unwinding… reading and playing scrabble… just quietly being.

And, thus, the search began for a place that would feed our wild spirits but would also accommodate my physical needs.  And that’s when we happened upon a Yurt rental nestled alone on 80 acres, just a mere 2 hours from us, yet light years away from city life.  The new term for this is “glamping” a twist on “glamorous camping.”  I don’t really care what outrageous term they attach to it.  For me, it’s called “possibility.”  It’s the world saying, “The life you love doesn’t have to stop.  You just have to adjust your compass and rechart your course!” 

We will be leaving for this adventure on Sunday and I can’t wait to let you know the outcome. 

“Solstice” describes a time when the sun reaches its highest peak in the sky.  Today, my peak is lower than it was before, but it’s hovering in a space that is attainable.  I choose not to set unrealistic goals, only to come up short and feel “less than” the rest of the world.  I am all that and more.  And so are you… for each of us, the height of our peaks are different.  So, for today, throw open the windows in the house of your soul, clear away the dust of days past, and inhale the sharp scent of a new season… filled with and abundance of new and yet to be imagined prospects

You don’t have to stop living.  You just have to start living differently!

Embrace the “different” in yourself and see what dreams you can come up with that will ignite your soul with a beacon of hope and possibility!